ct 27, 2021 & CARE DEMENTIA
What are the different models of dementia care in Australia?
Whenever discussing dementia, it is important to hold space for those who have received a dementia diagnosis or have had a loved one diagnosed. It can be a daunting and overwhelming time, wrapping your head around what this means, the emotions and changes set to happen and how to manage it.
While just a starting point, going through the different models of dementia care that are used in Australia may help in navigating next steps and seeing the choices available.
Understanding the options and choices can go a long way to finding a safe, human centred approach to dementia care that works for those that need and deserve it most.
then:
https://www.myagedcare.gov.au/types-care
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20, 2021 HEALTH & CARE DEMENTIA
What is the difference between Alzheimer’s and dementia?
When an elderly person shows signs of becoming forgetful, their friends and family may jump to the conclusion they have some form of dementia. It can be a worrying time for all involved. But becoming forgetful does not necessarily mean a person has dementia. It may be nothing, or it could be a sign of infection, other medical conditions or simply that you are doing too much or have significant stress in your life.
It’s important to understand the difference between Alzheimer’s disease and dementia, in order to understand a diagnosis and receive the correct treatment. Dementia is the umbrella term used to describe a number of symptoms that are associated with memory loss and cognitive decline, while Alzheimer’s is a disease that actually causes dementia.
The failure of some people to distinguish between the two conditions can cause confusion.
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Dementia in Practice
https://omny.fm/shows/dta/playlists/dementia-in-practice
Playlist by Dementia Training Australia
Listen as GPs talk about dementia, its types, diagnosis, management, impacts and more...
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by Staff Writers October 12, 2021
POSTED IN DEMENTIA
Program points way forward after dementia diagnosis
https://communitycarereview.com.au/2021/10/12/program-points-way-forward-after-dementia-diagnosis/
and
https://www.forwardwithdementia.org/au/
"Living positively after diagnosis"
In the past, people were told nothing could be done. They may have been given some medication, asked to return in six months, told to get their affairs in order and warned about driving. Those days are over,” says project leader Professor Henry Brodaty from UNSW Sydney’s Centre for Healthy Brain Ageing.
“People with dementia can live positively for many years. There are treatment strategies and we need to spread the word and assist diagnosticians and other health workers to improve their practice.
“By working together, we can help set people newly diagnosed with dementia on a better path.” Program resources, developed with the help of people living with dementia and their carers, include a website to guide people in the first year following diagnosis. The website offers information, advice, and tools, and shares experiences and strategies used by people with dementia and their carers.
Practical advice
Professor Lee-Fay Low from the University of Sydney says the website provides the information newly diagnosed people with dementia said they wanted and needed but struggled to find after a diagnosis. “They told us that much of the available information was too generic, and mostly focused on more severe dementia. It was hard to find practical advice about what they should do after diagnosis, like how they could get rehabilitative treatments and maintain their independence,” she said. “So this is what we have aimed to provide.”
Supporting doctors
Resources include a checklist of questions for people to ask their doctor, suggestions for how and when to share their diagnosis with family and friends, and planning tools to achieve their goals and overcome barriers caused by dementia symptoms. Many doctors find telling people they have dementia very difficult, Professor Brodaty says. “We’ve consulted with diagnosticians throughout Australia, including specialists and support staff in memory clinics,” he said.
“We’re trying to improve communication and encourage doctors to start dementia care planning and make referral to essential services, including counselling and allied health.”
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What is dementia?
Dementia refers to a range of symptoms that are the result of a deterioration of brain function.
The symptoms associated with dementia include:
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blog-how-do-i-know-if-i-have-dementia/
Written by: Lifted Team 25 February 2020
A question that I am often asked is: “How do I know if I have dementia?” Since the prevalence of dementia is increasing, people are worrying more about developing the condition, especially if they have already experienced dementia in their family and have witnessed the consequences.
Dementia Support Australia
Providing help 24/7, 365 days a year across Australia for carers of people living with dementia where behaviours are impacting on care.
Dementia Support Australia provides three levels of support:
Contact:Phone: 1800 699 799
Email: [email protected]
Online: dementia.com.au
Chat: www.dementia.com.au
Dementia cases expected to double by 2058, says comprehensive AIHW report
A major report on dementia from the Australian Institute of Health and Welfare (AIHW) was released this week, finding that dementia is the second leading cause of death in Australia and the number of people developing the disease is growing at an alarming rate.
Posted September 23rd 2021 by Liz Alderslade
It is expected that by 2058, dementia cases will double to 849,300 Australians from the estimated 386,000 - 472,000 people living with dementia in 2021.
The Dementia in Australia report was launched by the Minister for Senior Australians and Aged Care Services, Richard Colbeck on Monday. Also announced at the launch was the establishment of AIHW's National Centre for Monitoring Dementia.
The aim of the Centre is to undertake routine monitoring of dementia, find data gaps and address them, and help inform policy that meets the needs of Australians with dementia. Minister Colbeck says, "The report demonstrates the Institute’s expertise in producing the information and statistics that underpin our world-leading health and welfare systems. "Health and aged care policy is always the better for being informed timely and accurate data and information. This is a valuable report that provides an updated comprehensive picture of dementia and its impacts on Australia’s health and aged care sectors."
AIHW says this was the first comprehensive report on dementia since 2012 and showcases the latest health impacts of dementia on the population, carers and care needs, health and aged care service use, and dementia cost.
Dr Fleur de Crespigny, spokesperson for AIHW, says, "Dementia is an umbrella term for a large number of conditions that gradually impair brain function. It poses a substantial health, aged care and societal challenge and with Australia’s rapidly ageing population, it is predicted to become an even bigger challenge in the future. "Dementia was responsible for about 14,700 deaths in 2019 – accounting for 9.5 percent of all deaths that year. It was the second leading cause of death in Australia, behind coronary heart disease, and it was the leading cause of death among women (around 9,200 deaths in 2019).
"Estimates of the number of people in Australia living with dementia in 2021 range from 386,200 to 472,000. Using the AIHW estimate of 386,200, the number of Australians living with dementia is expected to more than double to 849,300 in 2058."
Ageing can increase your likelihood of developing dementia, however, dementia is not an inevitable part of ageing. One in 12 Australians aged 65 and over live with dementia and this number increases to two in five Australians aged 90 and over. Additionally, two-thirds of people with dementia are women.
To view the whole report, visit the Australian Institute of Health and Wellbeing website.
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Heavy toll
Study leader Professor Lily Xiao from Flinders University says caring for someone with dementia can take a heavy toll on emotional and physical health.
“(Carers) receive less education and limited ongoing support than professional carers do, and this can leave them feeling socially isolated due to the time spent caring for their loved one, stigma and the lack of quality social networks,” Professor Xiao says.
“Carers experience stress, poor health and poor quality of life, and this can contribute to the person they care for being permanently admitted to a nursing home earlier than they would if greater support for them existed.”
https://communitycarereview.com.au/2021/08/04/home-care-providers-to-trial-carer-support-program/
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https://www.dementia.org.au/sites/default/files/helpsheets/Helpsheet-LookingAfterFamiliesAndCarers01-TakingABreak_english.pdf
Taking a break is important for families and carers Caring for someone with dementia can be physically and emotionally tiring and stressful. Families and carers can easily become isolated from social contacts, particularly if they are unable to leave the person they are caring for. Regular breaks mean that you can have a rest, go out, attend to business or go on a holiday.
For further information and enquiries please contact:
National Dementia Helpline
1800 100 500
Find us online
dementia.org.au
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For people living with dementia, their families and carers
The Dementia Guide is an important resource for any person impacted by any form of dementia, of any age. The Dementia Guide can help anyone learn about dementia and the treatments, support and services available.
The Dementia Guide may also be useful to the friends, families and carers of people living with dementia, as it contains information about the impact dementia may have on a person, the treatment, support and services they may need, as well as for anyone taking on a caring role.
You can download a free digital version or order a printed copy of the Dementia Guide.
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Difficulty concentrating with dementia
Written by Lifted Team 5 August 2020
Struggling to keep track of conversations, zoning out and forgetting what they were doing, finding it harder to focus on day-to-day tasks. No two people experience dementia in the same way, however, difficulty concentrating is a challenging symptom that most people share.
As dementia progresses, the attention someone can give to a task, a topic, or goal-orientated behaviour (such as finishing all the dishes, or counting out the correct money), reduces.
At first, people may seem more distracted doing tasks they used to breeze through, such as finishing their favourite crossword or planning a journey. In the later stages, people may find it hard to engage in the most basic of tasks; such as dressing themselves, or making a cup of tea.
While it’s upsetting to see someone’s concentration decline, there are ways in which you can help your loved one feel more at ease with the changes dementia brings. And while there’s little evidence that brain exercises slow the decline, being aware and prepared will help both the person you love and your family feel better placed to deal with the effects pro-actively.
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Expert group investigates link between COVID and dementia
by Judy Skatssoon September 1, 2021
International dementia experts have formed a consortium to study the link between covid-19 and dementia, amid growing evidence the virus could increase the risk of dementia and accelerate progression of the disease.
Dr Alireza Atri - Research is coming to light that suggests the neurological impact of covid-19 can increase the risk of cognitive decline in later life, prompting the formation of the group representing 30 countries earlier this year.Chairman of Alzeheimer’s Disease International’s Medical and Scientific Advisory Panel (MSAP) and Director of the Banner Sun Health Research Institute in the US, Dr Alireza Atri, says he’s seen clear links between ‘long-covid’ and dementia in his own clinic and research.
A ‘Trojan horse’
He fears Covid could be a ‘Trojan horse’ for dementia.“Covid-19 can cause damage and clotting in the brain’s micro vessels, immune dysfunction and hyperactivation, inflammation, and, last but not least, direct viral brain invasion through the olfactory pathways,” Dr Atri says.
“With the blood-brain barrier damaged, our brain’s fortress is breached.
“Simply put, if you have a fortress and an enemy puts holes in your walls, you’re less likely to be able to withstand current and future attacks.
“COVID-19 opens the gates in the same way that the Greek soldiers hiding in the wooden horse did. It gives easier access to things that can harm your brain.”
Dr Atri says experts are particularly concerned about the neurological symptoms of ‘long-covid-19’ including cognitive problems like ‘brain fog’ and difficulties with concentration, memory, thinking and language.
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Medicines and dementia: what you need to know just click on the links on the RHS :-)
Medicines do not have to be part of your care plan for dementia, nor play a large role in your life.
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NATIONAL DEMENTIA HELPLINE:
1800 100 500
About the helpline
Alzheimers Center A-Z List for a greater understanding of the often confusing Dementia symptoms:
http://www.medicinenet.com/script/main/alphaidx.asp?p=a_35
or
- helpline webchat http://www.dementia.org.au/helpline/webchat
Would you like to chat online?
The National Dementia Helpline’s Webchat is a typed online conversation with a Dementia Advisor who can provide information about dementia and services.
Before starting Webchat, you will be asked to provide some basic information about yourself to help the Advisor during the conversation.
Please note that Webchat is not a counselling service. If you wish to cover multiple dementia related issues or seek emotional support please call the Helpline on 1800 100 500.
Operating hours - Webchat operates between 9.00am and 5.00pm EST, Monday to Friday excluding public holidays.
Out of hours assistance When Webchat is not available, we will contact you the next business day if you:
Only you and the Dementia Advisor can see your online conversation, however we will need to record some of your details for statistical and reporting reasons. For more information about how we use and store your personal information, please read our privacy policy.
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Dementia Behaviour Management Advisory Service (DBMAS)
https://dementia.com.au/services/dementia-behaviour-management-advisory-service-dbas
DBMAS is a support service for people with dementia who are experiencing changes in behaviour that impact their care or the carer.
The service supports staff and carers in community, residential aged care, acute and primary care settings with expertise, advice and short-term case management interventions.
Support is provided through:
Dr Katya Numbers from the Centre for Healthy Brain Ageing (CHeBA) discusses how the COVID-19 pandemic has posed unique risks to people with Alzheimer's disease and dementia. Dr Numbers' research has revealed people living with dementia have a relatively high risk of contracting severe COVID-19 and are also at risk of neuropsychiatric disturbances as a result of lockdown measures and social isolation.
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Sep 24, 2021 HEALTH & CARE DEMENTIA
New research detects early signs of Alzheimer’s with almost 100% accuracy
https://hellocare.com.au/new-research-detects-early-signs-of-alzheimers-with-almost-100-accuracy/
Researchers in Lithuania have developed an algorithm that can detect the early signs of Alzheimer’s disease with almost 100% accuracy.
Mild cognitive impairment (MCI) is often an early sign of Alzheimer’s disease, and though it usually has no clear symptoms early on, it can sometimes be identified with brain scans – known as functional magnetic resonance imaging (FMRI) – even before symptoms appear. However, identifying MCI with FMRI is both time consuming and expensive.
Now researchers have used deep learning technology – a type of artificial intelligence – that could potentially speed up the process, and they are able to detect MCI with better than 99% accuracy. The research involved using a deep learning model to classify thousands of images of the brains of 138 subjects with various stages of MCI. The model was able to identify MCI accurately in more than 99% of cases.
“Although this was not the first attempt to diagnose the early onset of Alzheimer’s from similar data, our main breakthrough is the accuracy of the algorithm,” said Rytis Maskeliūnas, of Kaunas University of Technology, one of the report’s authors and supervisor of the team running the model.
The aim is for the algorithm to be developed into software that could analyse data from vulnerable groups, such as the over 65s, those with a history of brain injury or those with high blood pressure.The software could be used to pick up anomalies that could enable earlier diagnoses of Alzheimer’s. The researchers say the algorithm should not be relied upon alone for a diagnosis, but it can provide useful information quickly and affordably, meaning the patient can have a diagnosis and treatment more quickly.
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June 04, 2021
DEMENTIA The 3 most common types of dementia
Dementia Statistics – Australia
Dementia is the second leading cause of death according to the 2016 statistics of Dementia Australia. In 2021, there are an estimated 472,000 Australians living with dementia[3] Without a medical breakthrough, the number of people with dementia is expected to increase to 590,000 by 2028 and 1,076,000 by 2058.
Whilst the condition is more common in older people, it affects young people also. This year, there are an estimated 28,300 people with younger onset dementia, expected to rise to 29,350 people by 2028 and 41,250 people by 2058.
The incidence of dementia increases as we grow older, from the age of 65 years, 1 in 10 people are reported to be diagnosed – with a significant increase at the age of 85 years to 3 in 10 people.
Having said this, it’s important to remember that dementia is not a ‘normal’ part of ageing, and if you do have concerns about your memory or someone close to you, we suggest seeking professional advice from a General Practitioner (GP). If you are still concerned about your memory after the visit to the GP, then request a second option and ask to see a neurologist, neuro-psychologist or geriatrician just to make sure.
Too hot or too cold: Managing changing temperatures with dementia
https://www.liftedcare.com/too-hot-or-too-cold-managing-changing-temperatures-with-dementia
As we age, we all become more susceptible and sensitive to fluctuations in heat. Many factors contribute to this, including slower metabolic rates, less fat to insulate our bodies, thinner skin and blood vessels, slower circulation and lower levels of activity. What’s more, many people prescribed a combination of certain medications can find that they have more difficulty regulating heat than others.
But for those living with dementia and Alzheimer’s, on top of these factors, there are even more reasons to keep an eye on hot and cold weather.
Do changes in temperature make dementia symptoms worse?
Since dementia and Alzheimer’s can affect the control centres in the brain; there’s more reason to believe that people living with these diseases could be more sensitive to hot and cold conditions.
This thinking has recently been backed up by research from the Dementia Research Centre in London, linking FTD (Frontotemporal Dementia) to increased sensitivity to outside stimulation. This sensitivity can be both physical and environmental, including things such as sound, light and environmental factors like temperature.
What’s more, studies carried out in some care homes where people with dementia were living, found that when temperatures ranged beyond their usual 18-22 degrees Celsius, some of the residents seemed more stressed and aggravated.
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June 17, 2021 HEALTH & CARE DEMENTIA
Why people with dementia don’t all behave the same
Dementia is the leading cause of death among Australian women and the third most common cause of death among men.
While dementia is not a normal part of ageing, the biggest risk factor for dementia is advancing age. Given ours is an ageing population, estimates suggest dementia cases are set to almost triple by 2050.
Many people associate dementia with memory loss, so it may come as a surprise that dementia is a killer. So, what does it do to the body to make this happen?
The brain is our control centre
Everything we do is controlled by the brain. It generates the instructions that tell our body parts what to do, as well as facilitating our complex behaviours, such as personality and cognition (our ability to think, understand and do things).
When a person has dementia, neurons in various parts of their brain stop communicating properly, disconnect and gradually die. We call this process neurodegeneration.
Dementia is caused by progressive neurodegenerative diseases. This means the disease starts in one part of our brain and spreads to other parts, affecting more and more functions in the body.
Certain causes of dementia will impact different parts of the brain, and the symptoms a person with dementia develops will depend on what part of their brain is affected.
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Australian Researchers Develop Hydrogel to Combat Parkinson's
Australian National University via Reuters
"Researchers have developed a gel made up of amino acids, which can be injected into the brain to help repair damage. When shaken, the hydrogel transforms into a liquid, making it easier to be inserted into the brain through a small capillary. The gel then reverts to its solid form, filling up irregularly shaped voids and helping to safely transport replacement stem cells to injured parts of the brain.
'The real game-changer here is it's sort of a one-off intervention,' Australian National University Professor David Nisbet said.
The gel has been tested so far only on animals and has been effective in combating movement disorders of Parkinson's disease in rats. Nisbet hopes clinical trials will start in the next five years, after the gel has proven safe for human use. Nisbet added the hydrogel was also relatively cheap to produce and could be scaled up to mass production relatively easily once the materials were approved for clinical use."
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Genes Mutated in Parkinson’s Linked to Mitochondrial Recycling in Neurons
Science Advances via GEN
“This work gives us unprecedented insight into mitochondria’s life cycle and how they are recycled by key proteins that, when mutated, cause Parkinson’s disease,” Ken Nakamura, researcher, commented. “It suggests that mitochondrial recycling is critical to maintaining healthy mitochondria, and disruptions to this process can contribute to neurodegeneration … Our future studies will investigate how these pathways contribute to disease and how they can be targeted therapeutically.”
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Chemists Find an Effective Remedy for Diseases Such As Alzheimer’s and Parkinson’s
European Journal of Medicinal Chemistry via SciTechDaily
"Russian scientists have synthesized chemical compounds that can stop the degeneration of neurons in Alzheimer’s, Parkinson’s, and other severe brain pathologies. These substances can provide a breakthrough in the treatment of neurodegenerative pathologies.
New molecules of pyrrolyl- and indolylazine classes activate intracellular mechanisms to combat one of the main causes of “aged” brain diseases – an excess of so-called amyloid structures that accumulate in the human brain with age. According to scientists, the use of pyrrolylazine in rehabilitation therapy allowed the tested animals to avoid the appearance of movement disorders and degeneration of hippocampal neurons. The research team has been continued to study the mechanism of action of new compounds and is preparing for their preclinical testing."
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June 29, 2021
HEALTH & CARE DEMENTIA Do diet drinks increase the risk of stroke and dementia?
Led by Dr Matthew Pase, a Boston University School of Medicine neurologist, the study showed that there may be a connection between diet soft drinks and both stroke and dementia. The study suggests that people who drink diet beverages daily are three times as likely to have a stroke or develop dementia versus people who drink it once a week or less. “This included a higher risk of ischaemic stroke, where blood vessels in the brain become obstructed and Alzheimer’s disease, the most common form of dementia,” Dr Pase said.
Alzheimer’s usually begins with mild memory loss.
When an elderly person shows signs of becoming forgetful, their friends and family may jump to the conclusion they have some form of dementia. It can be a worrying time for all involved.
But becoming forgetful does not necessarily mean a person has dementia. It may be nothing, or it could be a sign of infection, other medical conditions or simply that you are doing too much or have significant stress in your life.
It’s important to understand the difference between Alzheimer’s disease and dementia, in order to understand a diagnosis and receive the correct treatment. Dementia is the umbrella term used to describe a number of symptoms that are associated with memory loss and cognitive decline, while Alzheimer’s is a disease that actually causes dementia.
The failure of some people to distinguish between the two conditions can cause confusion.
What is dementia?
Dementia refers to a range of symptoms that are the result of a deterioration of brain function.
Other symptoms may include:
Is there a cure? While both dementia and Alzheimer’s are associated with the cognitive decline that often accompanies ageing, they are not considered a normal part of ageing. Other forms of dementia and Alzheimer’s get worse over time, and unfortunately there is no cure. Medications are sometimes used in the treatment of dementia, but they can only slow the condition’s progress or treat symptoms; they will not cure dementia.
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What is Anticipatory Grief?
29 July 2021 Rachael's recent interview with psychotherapist, Julis Samuel, explored many issues associated with 'Anticipatory Grief'
Rachael's Anticipatory Grief is grief that is experienced by families whilst a person is still alive. For people with dementia, this type of grief is characterized by multiple losses which occur as the person's condition worsens and causes greater difficulties and dysfunctions.
Family roles and relationships change. Family carers face an unpredictable future. There are new challenges week after week and the emotional and physical demands take a toll on their health. Loss of the companionship of a life partner – loss the future that might have been – is particularly tough to bear for carers. Healing is inhibited and recovery put on hold because the ‘lost’ companion is still there, still looking like they always did, still ever present and in need of constant support and unconditional love. This makes grief complicated for family carers, the grieving process is disrupted, powerful feelings become buried and remain unresolved.
It is widely recognised that the emotional demand of caring has a significant impact on the mental health of family carers. Taking care of one’s own needs is vital – but this is harder said than done. Many carers become so absorbed with caring tasks, making every effort to pre-empt problems and meet the needs of the person they are caring for – whilst also running a household, managing finances, keeping in touch with family members – they lose sight of their own needs and wishes, and even their sense of individual identity.
Seeking support is crucially important. Family carers do not set out to become carers. It’s a role that develops from a pre-existing relationship – spouse, daughter, son, sibling. Many carers do not describe themselves this way; they take on caring responsibilities because they want to, or because they love their relative, or because it’s expected of them. Maybe it’s for a mix of these reasons, maybe for other reasons too. It’s natural to feel ambivalent about being a carer.
Caring can also be a hugely rewarding experience. I have known family carers reflect on how dementia has enabled deeper connections with their loved-one, revealing insights hitherto unseen and opening up new possibilities.
One couple I knew – Graham and Sarah – took every opportunity to participate in activities designed to help people with dementia and family carers to engage in the arts, culture and nature.
Graham had dementia, Sarah was his primary carer. For five years after Graham’s diagnosis, they had the busiest time of their 30 years of married life, doing everything together. They re-discovered each other’s qualities and learnt now things about themselves. Their relationship developed in ways that would never have been possible if their lives had carried on as before.
Graham has now died. Sarah reflects on the roller-coaster journey. Naturally she is heartbroken to have lost him, but she doesn’t regret what happened. Of course, she wishes that Graham had never developed dementia, but, given that he did, she says, “We had the most wonderful 5 years together, explored new places, met so many wonderful people. It’s been bitter-sweet, beautiful turmoil”.
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One of the most positive benefits for Sarah was meeting other carers. Of all the help she received, the support of other carers was the greatest source of strength. Several carers that Sarah met through dementia organisations and support groups are now her friends in her life in recovery. The shared experience of caring for, and ultimately losing, a loved one with dementia is meaningful and sustaining.
Brain’s Lymphatic System Tied to Alzheimer’s Symptoms in Mice
A dysfunctional lymphatic system, described as a clogging of the brain’s sink, may explain why immunotherapies fail in some Alzheimer’s patients.
Amanda Heidt May 4, 2021 SANDRO DA MESQUITA
A damaged drainage system in the brain might be behind the spotty performance of some Alzheimer’s therapies, according to a study published April 28 in Nature. Mice modeling the neurodegenerative disorder that received plaque-busting antibodies along with a treatment to stimulate the growth of lymphatic vessels in the brain saw many of their symptoms reversed. Mice with damaged lymphatics, on the other hand, didn’t respond as well to the antibodies. This suggests that dysfunctional lymphatics might hinder the performance of antibody-based immunotherapy, an approach that has had mixed results in clinical trials among Alzheimer’s patients.
https://www.nps.org.au/australian-prescriber/articles/limiting-antipsychotic-drugs-in-dementia
Limiting antipsychotic drugs in dementia
Antipsychotic drugs are widely prescribed for people living with dementia. This is despite a high adverse effect burden and limited evidence of efficacy.
Most behavioural and psychological symptoms will subside spontaneously within six months. Trials of deprescribing are therefore recommended.
Behaviours should be seen as symptoms that have an underlying cause. Treatment should target these causes, rather than the resultant behaviours.
See “Infographic: How Cytokines Flow into and out of the Brain” Mice that had their lymphatic vessels ablated developed plaques more quickly, responded more poorly to the antibody therapies, and performed worse on cognitive tests such as finding a platform submerged in water, compared with mice that had their lymphatic systems intact. Using tracers, the team showed that a damaged lymphatic system both limited the number of antibodies making it into the brain from the CSF and mucked up the drainage of toxic breakdown products to the lymph nodes. The mice’s poor performance on a battery of cognitive tests suggests that faulty drainage may partially explain the mental decline that marks the disease, Kipnis tells The Scientist.
Coronavirus Is Four Times More Deadly In People Living With Dementia
By Rianna Manuel. Feb 10, 2021
https://hellocaremail.com.au/coronavirus-four-times-deadly-people-living-dementia/
Te study, published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, found that people living with dementia who contract coronavirus have far worse outcomes in terms of hospitalisations and deaths than people without dementia who catch coronavirus.
Dementia services are “fragmented, challenging to navigate and hard to access”
By Caroline Egan. Feb 3, 2021
Leading Australian dementia researchers say it is difficult for Australians to obtain a dementia diagnosis, and for carers and those living with the disease to access high-quality, coordinated support services.
See “The Hunt for a Blood Test for Alzheimer’s Disease”
First Alzheimer’s Blood Test Rolled Out for Clinical Use in US
The test will be a cheaper and more accessible alternative to currently available diagnostic tools, researchers say. Shawna Williams Nov 2, 2020
If you asked me [five or ten] years ago if there would ever be a blood test for Alzheimer’s, I would have been very skeptical,” says Howard Fillit, the executive director and chief science officer of the Alzheimer’s Drug Discovery Foundation, which invested in C2N’s development of the test. “So the fact that this is on the market now is just amazing.” Fillit wasn’t alone in thinking that, due to the blood-brain barrier, biomarkers from the brain wouldn’t be found in peripheral blood in sufficient quantities to deliver a diagnosis. But analytical techniques have advanced in sensitivity in recent years, allowing small amounts of biomarkers in the blood to be detected.
The C2N test relies on the ratio of two isoforms of the amyloid-β protein, Aβ42 and Aβ40, that aggregate to form amyloid plaques in the brain, combined with the presence of isoforms of apolipoprotein E (ApoE) that reflect whether the patient caries a genetic variant associated with Alzheimer’s risk. The results are combined into a score that indicates the probability that a patient would be found to have amyloid plaques if they were to undergo an amyloid PET scan. Doctors can then consider the test results along with other information about the patient to arrive at a diagnosis. According to data posted on the company’s website, a study in 686 patients with cognitive impairment found that those with scores above a certain cutoff point had a positive amyloid PET scan 92 percent of the time, while those with scores below a certain cutoff had a 77 percent chance of having a negative result on the PET scan.
While no drugs have yet been approved to treat Alzheimer’s, being able to distinguish it from other possible causes of cognitive impairment is nonetheless valuable, Fillit and Schindler say. As a clinician, Schindler says, “I want to know what my patients have.” That can be complicated because in many cases, “they don’t just have memory impairment, they’re taking multiple medications, they have all sorts of health issues,” she says. “And sometimes it’s really hard to know whether the symptoms they’re experiencing are due to something like Alzheimer’s or something else.”
Poor Sleep Linked with Future Amyloid-β Build Up
Accumulation of the protein was more likely to be found in the brains of people who slept less well years earlier, according to a new study. Abby Olena Sep 11, 2020
There’s evidence in people and animals that short-term sleep deprivation can change the levels of amyloid-β, a peptide that can accumulate in the aging brain and cause Alzheimer’s disease. Scientists now show long-term consequences may also result from sustained poor sleep.
Getting enough S L E E P...
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https://www.the-scientist.com/news-opinion/serotonin-and-dopamine-linked-to-decision-making-study-68050
Serotonin and Dopamine Linked to Decision-Making: In a first-of-its-kind study, researchers monitored subsecond changes in levels of the neurotransmitters in the human brain, unlocking new insight into their function.
Amanda Heidt Oct 16, 2020------------------------------------------ 000000000000000000000 --------------------------------------
Tim Hanks, a neuroscientist at the University of California, Davis, who was not involved in the study, tells The Scientist. “There’s a growing recognition that [dopamine and serotonin] have more refined and nuanced roles than what may have once been believed, and this study really makes that case clear in human decision-making.”
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New form of dementia discovered, redefining mainstream Alzheimer’s science
https://academic.oup.com/brain/article/142/6/1503/5481202#134309659
"…those of us who work in dementia have long been puzzled by our patients who have all the symptoms of Alzheimer's disease, but whose brains do not contain the pathological features of the condition," says University College London's Robert Howard, who did not work on this new study. "We have also been puzzled by a group of often very old patients whose dementia does not progress as rapidly as we would expect with Alzheimer's disease. We now know that these puzzling patients are probably suffering from LATE and not Alzheimer's disease and that LATE may be "mimicking" Alzheimer's in about 20 percent of cases."
Howard calls this new research, "probably the most important paper to be published in the field of dementia in the last five years," and says it should have major implications in how future drug trials for Alzheimer's disease are planned. Peter Nelson, corresponding author on the new research, agrees and suggests this broadening of our understanding into the causes of dementia will demolish the prior one-size-fits-all approach.
By Rich Haridy
April 30, 2019
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The cognitive effects of prolonged social isolation
https://www.the-scientist.com/features/how-social-isolation-affects-the-brain-67701
THE ISOLATED BRAIN
Studies of animals and people experiencing isolation have identified several brain structures that appear to be affected by a lack of social interaction. Although these studies can’t identify causal relationships—and don’t always agree with one another--they shine a light on some of the mechanisms by which physical isolation, or feelings of loneliness, could impair brain function and cognition.
In 1972, French adventurer and scientist Michel Siffre famously shut himself in a cave in Texas for more than six months—what still clocks in as one of the longest self-isolation experiments in history. Meticulously documenting the effects on his mind over those 205 days, Siffre wrote that he could “barely string thoughts” together after a couple months. By the five-month mark, he was reportedly so desperate for company that he tried (unsuccessfully) to befriend a mouse.
This kind of experiment, and less extreme isolation periods such as those experienced by spaceship crews or scientists working in remote Antarctic research stations, has offered glimpses of some of the cognitive and mental effects of sensory and social deprivation. People routinely report confusion, changes in personality, and episodes of anxiety and depression. A crueler version of those experiments is continually underway in prisons across the world. In the US alone, tens of thousands of incarcerated people are in long-term solitary confinement, with devastating and lasting effects on cognitive and mental health. (See “Extreme Isolation” below.)
For most of human society, however, social isolation acts in more insidious ways than these “experiments” capture, often disproportionately affecting vulnerable members of the population, such as the elderly, and with effects accumulating slowly such that they may go unnoticed for many years, if not decades. The effects of this subtler sort of social isolation, which some health researchers and psychologists have already described as a public health risk, are better observed in longer-term studies that look for links between a person’s social connections and how the mind functions.
Many studies have found that chronic social isolation is indeed associated with cognitive decline, and that isolation often precedes decline by several years. One 2013 study, for example, measured cognitive function at two time points in a cohort of more than 6,000 older individuals taking part in the English Longitudinal Study of Ageing (ELSA). People who reported having fewer social contacts and activities at the beginning of the study, researchers found, showed greater decline in cognitive function, as measured by verbal fluency and memory recall tasks, after four years.
More-recent studies have added weight to the association. A 2019 study of more than 11,000 people taking part in ELSA found that men who reported higher-than-average social isolation and women who reported increasing social isolation both experienced above-average decline in memory function within two years of being surveyed. However, the results don’t demonstrate that isolation causes deterioration in brain function, cautions ELSA director Andrew Steptoe, a UCL psychologist and epidemiologist who collaborates with Fancourt; it’s also possible that cognitive decline encourages some people to socialize less.
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" The Dementia Guide can help anyone learn about dementia and the treatments, support and services available. "
https://www.dementiadaily.org.au/almost-3000-dementia-guides-distributed/
Almost 3,000 Dementia Guides distributed. The Dementia Guide, a useful resource for people impacted by dementia, was launched in February this year and already almost 3,000 people have requested or downloaded a copy. The Dementia Guide can help anyone learn about dementia and the treatments, support and services available and is relevant for any person impacted by any form of dementia, of any age.
The guide is available for free to download on our website or a hard copy can be posted on request. With the generous support of Lifeview, Dementia Australia has been able to print hard copies of the Guide and send them for free to individuals, and for a small fee for a carton for organisations. While restrictions have meant there hasn’t been an official launch, Dementia Australia CEO Maree McCabe was able to personally thank Lifeview CEO Madeline Gall before social distancing came into force.
This guide is for anyone who has been impacted by any form of dementia.
The information in this guide is divided into sections.
L-R Maree McCabe, CEO Dementia Australia and Madeline Gall, CEO Lifeview
To download your copy, or to request a hard copy version, please visit www.dementia.org.au/resources/the-dementia-guide.
Posted: June 17th, 2020
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New study reveals barriers to effective medication management for those living with dementia
Up to two thirds of people with dementia are prescribed potentially inappropriate medications, with a new study from Monash University exploring system challenges which may lead to this. The study investigated the obstacles and complexities in medication management for people living with dementia through qualitative research involving four key stakeholder groups: carers, general practitioners, nurses and pharmacists.
Led by Monash University’s Centre for Medicine Use and Safety (CMUS), the study set out to identify the primary factors hindering effective medication management for those living with dementia. The foremost barriers are: poor communication and relationships between stakeholders; infrequent medication reviews and a lack of practitioner training, evidence and guidelines to navigate prescribing and deprescribing decisions.
CMUS researchers recruited focus group participants from a wide range of communities and healthcare settings, including those in carer roles who are carrying the majority of the burden and often experiencing high levels of stress, perpetuated by complicated healthcare systems and medication regimen complexity.
https://www.monash.edu/pharm/about/news/news-listing/2020/new-study-reveals-barriers-to-effective-medication-management-for-those-living-with-dementia
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An AI ecosystem to set benchmark for disease diagnosis
Professor Michael Barnett, together with the Sydney Neuroimaging Analysis Centre (SNAC) will lead a project awarded $4.02 million to investigate how AI can be paired with medical imaging technologies to set a new standard for the diagnosis, monitoring and treatment of neurological disease.
The Translating AI Networks to Support Clinical Excellence in Neuro Diseases (TRANSCEND) project will build a new, hybrid AI learning ecosystem by training it to recognise biomarkers linked to disease progression of the common, disabling neurological condition, multiple sclerosis.
AI medical research projects receive $7.1 million funding
8 July 2020
Translating technology into healthcare
https://www.sydney.edu.au/news-opinion/news/2020/07/08/ai-medical-research-projects-receive--7-1-million-funding.html
The University of Sydney has been awarded more than $7 million federal funding for research projects harnessing AI to diagnose and treat neurological and mental health disorders.
Psychologists, mathematicians and data scientists at the University of Sydney are teaming up to investigate how artificial intelligence (AI) and machine learning technologies can guide effective support and treatment for people with neurological disease and mental health disorders.
The two multidisciplinary projects received more than $7 million federal funding to focus on using AI to develop technology to support youth mental health care and to build an extensive AI network for more accurate diagnosis of neurological disorders such as multiple sclerosis.
Both projects are led by the University of Sydney’s Brain and Mind Centre.
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Caring for someone with dementia:
01 Communication
02 Therapies and communication approaches
03 Safety issues
04 Caring for someone who lives alone
05 Activities
06 Making the most of respite care
07 Driving
08 Travelling
09 Working with doctors
10 Going to hospital
11 Pain
12 Eating
13 Nutrition
14 Dental care
15 Dressing
16 Sleeping
17 Hygiene
18 Continence
19 Intimacy and sexual issues
20 Later stages of dementia
21 Palliative care
==================================================================================
Two copies of the APOE4 variant, which confers a higher risk of dementia, doubles the risk of severe symptoms as a result of infection with SARS-CoV-2, according to a study. Jef Akst May 26, 2020
https://www.the-scientist.com/news-opinion/alzheimers-gene-linked-to-higher-risk-of-severe-covid-19-67570
The APOE ε4 gene variant that puts people at a greater risk of developing Alzheimer’s disease also has a link to COVID-19. According to a study published today (May 26) in The Journals of Gerontology, Series A, carrying two copies of the variant, often called APOE4, makes people twice as likely to develop a severe form of the disease, which is caused by the SARS-CoV-2 coronavirus currently spreading around the world.
David Melzer of Exeter University and colleagues used genetic and health data on volunteers in the UK Biobank to look at the role of the APOE4 variant, which affects cholesterol transport and inflammation. Of some 383,000 people of European descent included in the study, more than 9,000 carried two copies. The researchers cross-referenced this list with people who tested positive for COVID-19 between March 16 and April 26—the assumption being that most such cases were severe because testing at the time was largely limited to hospital settings. The analysis suggested that the APOE4 homozygous genotype was linked to a doubled risk of severe disease, compared with people who had two copies of another variant called ε3.
The result isn’t due to nursing home settings or to a greater likelihood of having a diagnosis of dementia, which none of the 37 people with two copies of APOE4 who tested positive for COVID-19 had. “It is pretty bulletproof—whatever associated disease we remove, the association is still there,” Melzer tells The Guardian. “So it looks as if it is the gene variant that is doing it.”
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The New Changes to the approved provider process mean existing residential aged care or flexible care providers can now opt-in to deliver home care without having to submit a new application. This means more Choice for YOU:
Those who are over 65 years of age contact the My Aged Care line on 1800 200 422 for assistance with all their needs. This has the added advantage that you do not need to Repeat, Repeat yourself at each phone call :-)
Emergency Respite 1800 059 059
- for 63 days each financial year, with the possibility of extensions of 21 days at a time if an ACAT considers this necessary.
How much does it cost?
Costs for respite care may vary depending on your circumstances and the kind of help you need. The Australian Government subsidises a range of aged care services in Australia. If your circumstances allow, it is expected you’ll contribute to the cost of your care if you can afford to do so. If your respite involves in-home respite, day respite, or overnight or weekend respite, costs can vary depending on the type of service – from an hourly rate for in-home respite to a sessional fee for a morning or afternoon in a day care centre. Any fees and eligibility for subsidy will be discussed and agreed upon with your service provider before you receive the relevant services. If you receive respite care in an aged care home, different fees will apply.
If your loved one is to receive residential respite care through an aged care home, you will only have to pay the Basic Daily Fee and perhaps a booking fee. The booking fee is a prepayment of respite care fees and not an extra payment. The booking fee cannot be more than either a full week's basic daily fee or 25% of the fee for the entire stay, depending on which amount is the lowest.
Schedule of Fees and Charges for Residential and Home Care: From 20 September 2021
This page provides the latest updates to aged care fees and charges.
[i] Residents in designated remote areas may be asked to pay an additional $1.06 per day.
[ii] This rate applies to residents who enter residential care within this time period but not to those who were already in care prior to this time period. The Maximum Permissible Interest Rate applicable for the calculation of a resident’s daily payments is fixed either at their date of entry to care (for a low means resident) or the date they agree to a room price (for a resident who is not eligible for government assistance with their accommodation costs).
and do remember that the daily care fee IS negiotable.
What you will pay is discussed and agreed upon between you and the organisation that delivers your respite services. The rate is set Before you receive the relevant services. If it is an Emergency, this assessment will be brief. Once the emergency has passed, the organisation that provides your respite will most likely talk to you about your needs and the type of help you might need in the future.
Financial hardship assistance for Home Care and Residential Respite Care You will need to complete Form SA462 if you are seeking financial hardship assistance with your fees and charges in Home Care, or the basic daily fee in Residential Respite Care.
10 February 2020
Tips for those Carers who are looking after a loved one with Dementia: http://www.dementiaresearch.org.au/images/2077_DCRC_respite_guide_6web.pdf
Caring is just something that women do. It is a part and parcel of your life. Those who take on the much more demanding role when a loved one suffers an illness have been found to have the worst health of anyone. Consider Respite as Your Holiday, just for a few hours to have that uninterrupted cup of coffee, or chat with friends, or just sit alone and allow yourself to "Just Be".
Help sheets for you to download:
Coronavirus (COVID-19) - Tips for Carers, Families and Friends of People Living with Dementia
Coronavirus (COVID-19) - Tips for residential care providers
Coronavirus (COVID-19) - Tips for home care providers
Coronavirus (COVID-19) - Tips for People Living with Dementia
https://www.dementia.org.au/resources/coronavirus-covid-19-helpsheets/tips-for-people-living-with-dementia
Carers - who are separated from their care receivers due to cornonavirus, you can use 63 respite days without your payments stopping. If you run out of respite days, you can call the carers line on 132 717.
Find out all the info here: https://www.servicesaustralia.gov.au/individuals/subjects/affected-coronavirus-covid-19/if-you-already-get-payment-from-us-coronavirus-covid-19/carers-coronavirus-covid-19
06 April 2020
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Older Aussies get dedicated pandemic support line
By: Dallas Bastian in News, Top Stories April 23, 2020
Senior Australians, their families and carers who seek help or advice about navigating the coronavirus pandemic now have access to a dedicated free call support line. The support line will operate Monday to Friday, except public holidays, from 8.30am to 6pm. It can be reached on 1800 171 866.
The phone line was set up by the government in conjunction with COTA Australia, National Seniors Australia, the Older Persons Advocacy Network and Dementia Australia.
Minister for Aged Care and Senior Australians Richard Colbeck urged Australians to make use of support if they are feeling lonely, distressed, troubled or confused. OPAN chief executive Craig Gear said the hotline will provide particular support to those accessing aged care services who are disproportionately impacted by health precautions and restrictions. “People are scared and confused,” Gear said. “Many are unsure what is safe and what isn’t. The hotline is an important part of what will need to be a big community response. We need everyone checking in and supporting older people in aged care in particular because they are vulnerable to both the virus and social isolation.”
Having difficulty getting answers from your loved one's Provider/ Nursing Home? - Ring the Older Persons Advocacy - 1800 700 600.
For help if your loved one has Dementia - do ring Dementia Australia on 1800 100 500.
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Video calls during social isolation may make no difference to the quality of life of older people, a review of scientific studies suggests.
The evidence from these three studies suggests that video calls have little to no effect on loneliness after three, six or 12 months. There is also little to no difference in symptoms of depression after three or six months, although after a year, older people who used video calls may have had a small reduction in depression compared to those who received usual care. Similarly, video calls may make little to no difference to older people’s quality of life.
A Cochrane Rapid Review, Video calls for reducing social isolation and loneliness in older people, will come as small comfort to many after mobile technology was widely touted as a way of countering loneliness in older people forced in to isolation during COVID-19 restrictions.
The authors of the review looked at three studies involving more than 200 participants aged 65 and over who used internet video calls on computers tablets or smartphones.
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Dementia Behaviour Management Advisory Service (DBMAS)
https://dementia.com.au/
DBMAS is a support service for people with dementia who are experiencing changes in behaviour that impact their care or the carer.
The service supports staff and carers in community, residential aged care, acute and primary care settings with expertise, advice and short-term case management interventions.
Support is provided through:
Who is Eligible?
Our clients are people living with dementia, care workers, health professionals and family carers who are supporting a person with dementia experiencing behaviours and psychological changes that are impacting their care.
To receive DSA services the person requiring support must have:
Join Dementia Australia Facebook support group
Dementia Australia Facebook Dementia Support Group is a thriving online community of more than 8,000 like minded people. It is a place where family carers come together and share their experiences as well as provide comfort, solace and sometimes light-hearted relief for each other.
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Scientists make breakthrough in understanding how blood pressure affects the brain
By: Conor Burke February 10, 2020
Scientists have made a breakthrough in understanding the way brain blood flow affects certain serious illnesses such as high blood pressure, migraines and even dementia.
The academics from the University of Auckland, University College London, and Bristol University, have discovered that the brain has its own blood pressure sensors that monitor and regulate its own blood flow, separate from the body-wide blood pressure control system.
The brain needs more blood than any other organ and disturbances to brain blood flow are a known cause in many diseases. For example, sustained reduction in brain blood flow is said to be a likely cause of cognitive decline, dementia, and neurodegenerative disease such as Alzheimer’s Disease.
https://www.agedcareinsite.com.au/2020/02/scientists-make-breakthrough-in-understanding-how-blood-pressure-affects-the-brain/
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Could walking gait speed or other gait characteristics decline be an indication of dementia?
Gait Characteristics and Cognitive Decline: A Longitudinal Population-Based Study
Issue title: Gait Disorders in Alzheimer’s Disease and Other Dementias
Journal: Journal of Alzheimer's Disease, vol. 71, no. s1, pp. S5-S14, 2019
Accepted 1 March 2019 Published: 19 September 2019
Gait impairments are emerging predictors of dementia. However, few studies have examined whether gait predicts decline in specific cognitive domains. To determine whether gait speed or other gait characteristics were associated with decline in specific cognitive domains and the role of the ApoE4 genotype in modifying these associations.
Participants (n = 410; mean age 72.0±7.0 years) were randomly selected from the electoral roll. At baseline, gait speed was assessed using the GAITRite walkway. Gait variability in step time, step length, step width, and double support time (DST) was calculated as the standard deviation of each measure across all steps. In a subsample (n = 177), speed was measured under fast pace. The difference between usual and fast pace was calculated. At baseline, 2.6 and 4.6 years processing speed, memory, executive and visuospatial function were measured using neuropsychological tests. Multivariable mixed models were used to examine 1) associations between gait and the different cognitive domains over time and 2) whether the presence of ApoE4 genotype modified these associations.
Higher DST variability was associated with greater decline in memory (p for interaction 0.03). Slow gait speed predicted decline in processing speed (p = 0.02) and visuospatial function (p = 0.03). In ApoE4 carriers, gait speed also predicted decline in memory (p = 0.02). Other gait characteristics did not predict decline in any of the cognitive domains (p > 0.05).
Gait is multifaceted with correlations between individual gait measures, but different gait characteristics may not necessarily behave uniformly and may be controlled by different brain constructs. Therefore, using factor analysis could be problematic if gait characteristics vary in their sensitivity to cognitive decline.
These findings add to the evidence that gait is an early indicator of cognitive decline, but that specific gait measures may provide diagnostic insights into specific cognitive domains.
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Lewy body disease, a form of degenerative dementia, has proven extremely difficult to accurately diagnose. This is due to its similarities to other diseases and the impossibility of finding Lewy bodies through brain scans and other diagnosis methods.
New report reveals two thirds of people think dementia is a normal part of ageing, rather than a medical condition
https://www.dementia.org.au/media-releases/2019/new-report-reveals-two-thirds-of-people-think-dementia-is-a-normal-part-of-ageing-rather-than-a-medical-condition
A new global survey of almost 70,000 respondents across 155 countries – including Australia – has revealed a startling lack of knowledge around dementia, with two thirds of people thinking the disease is a normal part of ageing. The survey, commissioned by Alzheimer’s Disease International, of which Dementia Australia is a member, also found that a staggering 95 per cent of respondents think they will develop dementia in their lifetime.
The World Alzheimer Report 2019: Attitudes to dementia, is being released today ahead of World Alzheimer’s Day on Saturday 21 September. The report reveals the results of the world’s largest survey ever undertaken into attitudes to dementia.
Nobody wants to be told they have dementia, but if the person you love refuses to accept their diagnosis, don’t despair. There’s plenty you can do to help them come to terms with it and get the help they – and you – might need.
The tests have been done and the diagnosis is official, but your loved one may still refuse to discuss it or believe it – even if they’ve spent months or years experiencing symptoms. Dementia denial can be a particularly frustrating obstacle for family and friends, especially if they’re trying to sort out practical ways to keep the person they love safe. But it’s also very understandable…
Dementia Screening Test. Watch the video...
Put yourself in their shoes
https://www.ideas.org.au/blog/dementia-dawns-story.html
'Dawn' was convinced there were people coming to steal her belongings, so after dinner when her husband Bill* was settled in the lounge room dozing in front of the television, she made her move. Life as it IS.
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The widely expected move comes months after the companies scrapped trials of another Alzheimer’s drug.
16 September, 2019 EMILY MAKOWSKI
On Friday (September 13), biotechnology firm Biogen and its partner Eisai announced plans to abandon two clinical trials for an Alzheimer’s treatment using the drug elenbecestat. The decision to end the studies came after a data safety monitoring board found that the benefits of administering elenbecestat did not outweigh the risks, reports Reuters. In March, the companies ended two late-stage trials of another Alzheimer’s drug, aducanumab. Elenbecestat and aducanumab were both β-site amyloid precursor protein-cleaving enzyme (BACE) inhibitors, drugs that curtail the production of the main component of the amyloid plaques found in Alzheimer’s patients.
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02 August 2019
A new artificial intelligence (AI) model created by MIT Media Lab researchers can help in predicting which patients at risk for Alzheimer’s disease will experience significant cognitive decline. By predicting these patients’ cognition test scores up to two years in the future, this machine learning platform could be used to improve the Alzheimer’s drug research and development process. These researchers will be presenting their findings next week at the Machine Learning for Health Care conference.
Shortcomings in Current Alzheimer’s Research The selection of potential drugs and participants for clinical research regarding Alzheimer’s treatment has been an expensive, unsuccessful process thus far. Major pharmaceutical companies have spent hundreds of billions in researching the disease over the past 20 years, but these efforts have experienced many failures.
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https://www.agedcareinsite.com.au/2019/07/exciting-new-research-finds-healthy-lifestyle-reduces-dementia-risk-regardless-of-genetics/
15 July 2019
New “exciting” research coming out of the UK has found that a healthy lifestyle, which includes physical activity and low alcohol consumption, can significantly lower the risk of dementia, regardless of a genetic predisposition to the disease. The University of Exeter-led research looked at data from 196,383 adults of European ancestry aged 60 and older from UK Biobank, and found that the risk of dementia was 32 per cent lower in people with a high genetic risk if they had followed a healthy lifestyle.
“This is the first study to analyse the extent to which you may offset your genetic risk of dementia by living a healthy lifestyle. Our findings are exciting as they show that we can take action to try to offset our genetic risk for dementia. Sticking to a healthy lifestyle was associated with a reduced risk of dementia, regardless of the genetic risk,” said joint lead author Dr Elżbieta Kuźma.
The study found that living a healthy lifestyle concurred with lower risk of dementia across all genetic risk groups. Joint lead author Dr David Llewellyn, from the University of Exeter Medical School and the Alan Turing Institute, said: “This research delivers a really important message that undermines a fatalistic view of dementia. Some people believe it’s inevitable they’ll develop dementia because of their genetics. However, it appears that you may be able to substantially reduce your dementia risk by living a healthy lifestyle.”
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Neurodegenerative diseases associated with old age such as Alzheimer's disease present major problems for society, and they currently have no cure. The telomere protective caps at the ends of chromosomes shorten with age, and when they become critically short, they can induce a persistent DNA damage response at chromosome ends, triggering secondary cellular responses such as cell death and cellular senescence.
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9th July 2019
The eyes have it:
https://www.dementiadaily.org.au/the-eyes-have-it-diagnosing-alzheimers-disease-with-an-eye-test-before-symptoms-appear/
Diagnosing Alzheimer’s disease with an eye test, before symptoms appear -A research project being conducted in Melbourne is entering the trial phase of a non-invasive, cost-effective eye test to detect early signs of Alzheimer’s disease. The project has received $600,000 in funding from a major coalition of American philanthropists known as the Alzheimer’s Drug Discovery Foundation, which includes the likes of Bill Gates and MacKenzie Bezos.
Researchers from the Centre for Eye Research Australia (CERA) will fast track the development of the test and start clinical trials in August. The world-first eye scan trial will use coloured light to look through the retina for abnormal proteins that build up in the brain. The technology is similar to that used in NASA satellites.
The camera technology developed by Associate Professor Peter van Wijngaarden and Dr Xavier Hadoux, from CERA and the University of Melbourne, will measure the amyloid beta in the retina many years before symptoms of the disease appear.
Associate Professor van Wijngaarden said the approach had the potential to revolutionise the diagnosis of Alzheimer’s disease.
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Specialist Dementia Care Program: Overview -
The Specialist Dementia Care Program (SDCP) is a new Australian Government initiative. The program will provide a person-centred, multidisciplinary approach to care for people exhibiting very severe behavioural and psychological symptoms of dementia, who are unable to be appropriately cared for by mainstream aged care services. The program will offer specialised, transitional residential support, focusing on reducing or stabilizing symptoms over time, with the aim of enabling people to move to less intensive care settings.
The SDCP will provide care for people exhibiting very severe behavioural and psychological symptoms of dementia (which may also be referred to as responsive behaviours associated with dementia), who are unable to be appropriately cared for by mainstream aged care services. It is estimated that up to 1 per cent of all people living with dementia would be in the target group. A nationally consistent assessment methodology will be used to ensure the program benefits those most in need.
Key features of the SDCPThe SDCP provides a new approach to care and will be rolled out in two phases. The department will work with key stakeholders to evaluate and refine the model to ensure the model provides optimal care for people exhibiting very severe behavioural and psychological symptoms of dementia.
The SDCP will provide intensive, specialised care in a dementia friendly environment, generally a dedicated unit within a broader residential aged care service. The SDCP will provide transitional support with the aim of enabling people to move to less intensive care settings. Specialist clinical support will be a key feature of the model. The SDCP will complement state and territory government services and supports for people with very severe behavioural and psychological symptoms of dementia.
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New form of dementia discovered, redefining mainstream Alzheimer’s science
MEDICAL Rich Haridy May 1st, 2019
https://newatlas.com/new-dementia-disease-late-alzheimers/59491/
Dubbed by one scientist as, "probably the most important paper to be published in the field of dementia in the last five years," a team of researchers has described a newly defined neurodegenerative disease that closely mimics the symptoms of Alzheimer's, but which has an entirely different pathological cause.
…those of us who work in dementia have long been puzzled by our patients who have all the symptoms of Alzheimer's disease, but whose brains do not
contain the pathological features of the condition," says University College London's Robert Howard, who did not work on this new study. "We have also been puzzled by a group of often very old patients whose dementia does not progress as rapidly as we would expect with Alzheimer's disease. We now know that these puzzling patients are probably suffering from LATE and not Alzheimer's disease and that LATE may be "mimicking" Alzheimer's in about 20 percent of cases."
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“Mental health, in particular positive psychological factors such as having a purpose in life, is emerging as a very potent determinant of health outcomes,” said Patricia Boyle, PhD, Associate Professor of Behavioral Sciences at the Rush Alzheimer’s Disease Center of Rush University Medical Center in Chicago. “Clinicians need to be aware of patients’ mental state and encourage behaviors that will increase purpose and other positive emotional states.”
https://www.mdedge.com/neurology/article/99269/stroke/sense-purpose-may-reduce-risk-cerebral-infarcts
Australian Government Programs to Support People Living with Dementia, and Their Support Networks
Page last updated: 15 February 2019
National Dementia Support Program
Younger Onset Dementia Key Worker Program
Dementia Education and Training for Carers
Dementia Behaviour Management Advisory Services
Severe Behaviour Response Teams
Dementia Training Program
Interventions to Support Carers of People with Dementia
This review was released on 18 October 2018 and considers what works to support carers of older people with dementia to prevent or delay entry into residential aged care. Download the review: Interventions to Support Carers of People with Dementia (PDF - 1059 Kb)
National Dementia Support Program (NDSP)
Under the NDSP, the Australian Government funds education programs, services and resources that aim to improve awareness and understanding about dementia and increase the skills and confidence of people living with dementia, their carers, families, health professionals, volunteers and community contacts. Services provided under the NDSP include:
* Free local call, calls from mobile and pay phones may incur extra charges. For people who do not speak English, the Translating and Interpreting Service (131 450) will provide translation and interpretation services for calls to the National Dementia Helpline.
The NDSP is funded under the Dementia and Aged Care Services fund.
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Queensland-Wide Telephone Support Group
This group is hosted by Alzheimer’s Queensland last Wednesday of every month. The group is held from 1:00pm to 2:00pm. Alzheimer’s Queensland organizes telephone link up at no cost to members. Carer Support Groups provide information and support for those caring for a friend or family member with dementia. Please ring 1800 639 331 or email [email protected] for more information, to register or to be placed/removed from the mailing list.
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Talking informally with other Carers Does Help!
Angels Carer Support Group. Held the last Tuesday of each month at St. Paul's Anglican Church Hall, 69 Palm Beach Ave, PALM BEACH
Come just after 1.00pm for that cuppa and a chat. Often we have Speakers on subjects of interest to us as Carers - they start about 1.15pm and go to about 3.00pm. Other times we just sit, relax and enjoy each other's company and support each other as we face the daily caregiving tasks. Sit and chat, and take a brief break - for YOU :-) Father Phillip is a Great Supporter of the Angels.
YOU are most welcome to join us :-) Do take CARE of YOU too...
and to find out what else is going on in the Palm Beach area: http://palmbeachgoldcoast.net.au/events/
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Legal rights
A practical guide to help people diagnosed with dementia, and their families and carers, better understand the legal issues they may be faced with.
Read or download Dementia and your legal rights
- in Queensland - Advance Care Directive
https://end-of-life.qut.edu.au/advance-directives/state-and-territory-laws/queensland#547671
Superannuation and dementia
People with dementia and their families often ask whether they have a right to access their superannuation early to assist with their financial situation, given that they have a terminal illness.
Read or download Superannuation and dementia
Dementia Screening Test. Watch the video...
and the Standardized Mini-Mental (SMMSE)
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The protein expression data, which are freely available online, could help identify new drug targets for the disease.
https://www.the-scientist.com/news-opinion/new-map-shows-brain-changes-associated-with-alzheimers--65428
Feb 04, 2019
Researchers in the UK and New Zealand have created the largest-ever database of protein expression changes associated with Alzheimer’s disease, according to a study published today (February 4) in Communications Biology. The data, which are freely available to researchers online, reveal new insights into the brain areas affected by Alzheimer’s, as well as the molecular pathways leading to the disease.
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FDA Cracks Down on “Bad Actors” in Dietary Supplement Market
The agency sends warning letters to makers of products that claim to prevent or treat Alzheimer’s and other diseases, and announces changes to its enforcement practices.
https://www.the-scientist.com/news-opinion/fda-cracks-down-on-bad-actors-in-dietary-supplement-market-65460
12 February 2019
The number of people living with dementia around the world has more than doubled to almost 44 million since 1990, according to a global study.
The figure, which the report says is mainly a reflection of the growth and ageing of the world’s population, is estimated to reach around 100 million by 2050.
25 January 2019
Dementia Australia has welcomed the rollout of an additional 10,000 new high-level home care packages, which commenced in January 2019 and will support more senior Australians, including those with dementia, to remain living independently in their own homes.
Dementia Australia CEO Maree McCabe said as the prevalence of dementia continues to increase so does the need for high-level home care packages.
“Currently, around 70 per cent of the more than 436,000 Australians with dementia live in the community. An increase of home care packages will help more Australians to live at home for as long as possible, in a supported way. This will make a substantial difference not only to their lives, but also to those of their families and carers, as well as the broader community,” Ms McCabe said.
These additional home care packages will provide funding for up to $50,000 of care services per person per year, which may include
To contact Dementia Australia, call the National Dementia Helpline on 1800 100 500 or go to www.dementia.org.au
and that All Important: EATING
Many people living with dementia who don’t eat, or reject food (or drink, but that’s a whole other article!) offered to them, will eat it readily with just the right assistance. Of course, there are times when our inputs may not work, or when dementia has progressed to such an extent that eating becomes physically nigh on impossible, but I believe we must never assume that ‘not eating’ necessarily means ‘not hungry’.
And what is even more worrying, is that ‘behaviour’ like calling out or becoming angry or aggressive at the table might then be dealt with in ways that make things worse – including with medication that impacts alertness or concentration, so further reduces interest in food or ability to eat safely and exacerbates the problem!
For people living with dementia, staying well-nourished and hydrated can involve all sorts of challenges.
Specialist Dementia Care Program
The Specialist Dementia Care Program (SDCP) is a new Australian Government initiative. The program will provide a person-centred, multidisciplinary approach to care for people exhibiting very severe behavioural and psychological symptoms of dementia, who are unable to be appropriately cared for by mainstream aged care services. The program will offer specialised, transitional residential support, focussing on reducing or stabilising symptoms over time, with the aim of enabling people to move to less intensive care settings.
06 December 2018
Target Group:
The SDCP will provide care for people exhibiting very severe behavioural and psychological symptoms of dementia (which may also be referred to as responsive behaviours associated with dementia), who are unable to be appropriately cared for by mainstream aged care services. It is estimated that up to 1 per cent of all people living with dementia would be in the target group. A nationally consistent assessment methodology will be used for all assessments to ensure the program benefits those most in need.
Key Features:
The SDCP provides a new approach to care and will be rolled out in two phases. The department will work with key stakeholders to evaluate and refine the model as it rolls out nationally, to ensure the model provides optimal care for people exhibiting very severe behavioural and psychological symptoms of dementia.
The SDCP will provide intensive, specialised care in a dementia friendly environment, generally a dedicated unit within a broader residential aged care service. The SDCP will provide transitional support with the aim of enabling people to move to less intensive care settings. Specialist clinical support will be a key feature of the model. The SDCP will complement state and territory government services and supports for people with very severe behavioural and psychological symptoms of dementia.
At full rollout in 2022-23 it is expected that there will be at least one specialist dementia care unit (within a broader residential aged care service) operating in each of the 31 Primary Health Networks.
06 December 2018
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In Queensland, there were an estimated 77,633 people with dementia in 2017, which is estimated to increase to 105,170 in 2025 and 233,298 by 2056, which is estimated to cost Queensland $2.69 billion in 2017, which is expected to soar to $3.58 in eight years, by 2025, and to $7.6 by 2056.
Dementia Daily - March 2017.
September was Dementia Awareness Month and the Department of Human Services has been working closely with Dementia Australia to share information to help families start a conversation about dementia.
Have a look at these questions on social media and filmed a panel Q&A with Dementia Australia’s Dr Kaele Stokes and Financial Information Service officer, Justin Bott.
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Videos re Dementia and Diabetes
Supporting Someone with Dementia and Diabetes
Living with Dementia and Diabetes
Dementia and Stroke or Coronary Heart Disease
This toolkit relates to three chronic conditions, dementia, stroke and coronary heart disease.
A combination of dementia and stroke or coronary heart disease can result in a unique set of challenges for people living with these conditions and their carers. All three conditions have similar risk factors meaning it is not uncommon for a person to be living with more than one of these.
Videos re Dementia and Chronic Heart Conditions or Stroke
How to support them
Living with Dementia and Chronic Heart Conditions or Stroke
For more information visit http://www.dementia.org.au/
===============================Medicines and dementia: what you need to know
Medicines do not have to be part of your care plan for dementia, and if they are, they do not have to play a large role in your life.
NPS MedicineWise and Alzheimer’s Australia have prepared downloadable materials to help you ask questions and talk with people close to you and the health professionals involved in your care about how you would like to be supported.
The main resource is an information booklet, designed to help you:
Dementia Q&A:
01 Drug treatments for Alzheimer's disease - Cholinesterase inhibitors
02 PBS subsidies for cholinesterase inhibitors what are the conditions?
03 Drug treatments for Alzheimer’s disease - Memantine
04 Drugs used to relieve behavioural and psychological symptoms of dementia
05 Risperidone for treatment of behavioural symptoms in dementia
06 Mental exercise and dementia
07 What you eat and drink and your brain
08 Physical exercise and dementia
09 Safer walking for people with dementia approaches and technologies
10 Tests used in diagnosing dementia
11 Diagnostic criteria for dementia
12 Genetics of dementia
13 Mild Cognitive Impairment (MCI)
14 Vascular Cognitive Impairment
15 Depression and dementia
16 Pain and dementia
17 Brain donation
18 Rights to health information
19 Aluminium and Alzheimer's disease
20 Anaesthesia for older people and people with dementia
21 Delirium and dementia
22 Preventing financial abuse of people with dementia
23 Souvenaid
24 Anticholinergic drugs
25 Benzodiazepines
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Alzheimer’s researchers have proposed a radical change in the way the disease is defined, focusing on biological changes in the body rather than clinical symptoms such as memory loss and cognitive decline. The new research framework, released on Tuesday by the Alzheimer’s Association and the National Institute on Aging, is meant to provide scientists with a common language for describing the disease in research studies based on measurable changes in the brain that set Alzheimer’s apart from other causes of dementia.
“Much of the general public views the terms dementia and Alzheimer’s disease as interchangeable, but they are not,” said Dr Clifford Jack of the Mayo Clinic in Rochester, Minnesota, who helped craft the guidelines. The proposed changes follow guidance announced earlier this year by the US Food and Drug Administration and the European Medicines Agency to encourage the testing of new Alzheimer’s medicines based on biomarkers, rather than on clinical symptoms.
The moves would allow companies to test drugs in people before symptoms appear, offering a better chance of intervening before the disease has destroyed too many brain cells. Under the proposed research framework, Alzheimer’s would be characterised by three factors: evidence of two abnormal proteins associated with Alzheimer’s – beta amyloid and tau – and evidence of neurodegeneration or nerve cell death, all of which can be seen through brain imaging or tests of cerebral spinal fluid. It also incorporates measures of severity using biomarkers and a grading system for cognitive impairment.
13 April 2018
Blood test offers hope for for Alzheimer's
AAP in News, February 1, 2018
Scientists are closer to rolling out a revolutionary blood test for Alzheimer’s after discovering a new way of detecting one of the earliest signs of the brain disease. For decades scientists worldwide have tried to develop blood tests to predict Alzheimer’s in the hope of replacing the expensive and often invasive brain scans and lumbar punctures currently used to diagnose the most common form of dementia.
A team of Australian and Japanese scientists now claim they have the most accurate test yet for the earliest indicator of Alzheimer’s – a build-up of an abnormal protein in the brain known as beta-amyloid.
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March 2018
ICBII UPDATE ON THE ROAD TO THE CURE
THE FDA SEEMS TO BE LOOSENING RESTRICTIONS ON APPROVING DRUGS FOR ALZHEIMER’S DISEASE Could Parkinson’s Be Next?
With the population living longer, neurodegenerative diseases such as Alzheimer’s (AD) and Parkinson’s (PD) diseases have become an increasing economic threat to the welfare of the world community, not to speak of the emotional toll it has taken on the patients and loved ones. According to some estimates, Alzheimer’s has more than 55 million individuals afflicted with the disease. US alone has 5.1 million Alzheimer’s patients, which does not take account for the millions that are yet to be diagnosed and those that are misdiagnosed. AD is the sixth leading cause of death in the United States. It is the fifth-leading cause of death among those ages 65 and older and a leading cause of disability and poor health. With no cure on the horizon, the FDA has begun to rethink its strategy for the approval of new drugs for treating early stage (stage 1) Alzheimer’s disease. The following paragraph from the FDA is being distributed for comments purposes only, not for implementation.
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Big pharma calls it quits on Alzheimer's and Parkinson’s research
Criticisms are flowing from national and international peak bodies as they come to terms with the recent announcement by one of the world’s leading drug makers, Pfizer, to end their research into discovering new medications for Alzheimer's and Parkinson’s. January 2018
Dementia Australia voice concerns
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An Absolute Must Read. From one who Actually Has Dementia...
Time To Tell The Truth About Dementia….From Someone Living With Dementia
By Norrms McNamara. Jan 22, 2018
Things YOU always wanted to know, or SHOULD know about dementia, but THEY were too AFRAID to TELL YOU, and I am sure many others were horrified around the world to learn that THIS information is not being given out, this is “MY ANSWER TO THEM”.
These are just 15 points of what you MAY come to expect after a diagnosis of dementia, WHY don’t they tell you this? and WHY has it taken so long to be told this? especially by a person who is LIVING with this disease ?? I have NO IDEA !!
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Sleep Habits
The first step toward better sleep is better “sleep hygiene” – daily habits that train your body for sleep.
'How' you sleep matters
https://www.stuff.co.nz/life-style/well-good/teach-me/91598733/What-your-sleeping-position-says-about-you
The science of sleep has begun to show clear links between lack of sleep and a raft of different ailments - including Alzheimer's disease. "There really is not a single tissue or organ of the body or process of the mind that doesn't depend on sleep, and doesn't implode when you don't get enough," says Walker.
READ MORE:
* How much sleep do you need?
* What your sleeping position says about you
* Dr Libby: Five ways to improve your sleep
Walker's new book, Why We Sleep: The New Science of Sleep and Dreams, has been among the top 10 bestsellers in Britain for nine weeks. It drives home an unwelcome message - that hardly any of us get enough sleep and we're doing ourselves damage as a result.
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A range of sleeping problems are associated with a large majority (about 96%) of the people suffering from Parkinson’s disease (PD) and unless they are recognized and tackled effectively, they can give rise to serious consequences. Often the sleep disorders are an early indicator of this impending neurodegenerative disorder, even before the appearance of motor symptoms, and can manifest as restless sleep, nightmares, vivid dreams, acting out dreams during sleep, and excessive daytime sleepiness. These sleep-related problems can affect the quality of life in PD patients, resulting in fatigue, poor attention, memory deficits, and predisposition to accidents.
No matter your age or physical ability, there are steps you can take to keep the mind and body active. Despite the efforts of researchers around the globe, there is currently no known cure for dementia. However, there are things you can do to help slow the progression, alleviate the symptoms or even reduce your likelihood of getting the disease in the first place.
www.dementiadaily.org.au/healthy-starts-here/
Younger onset Dementia? You have not been forgotten...
An information sheet about younger onset dementia is in the appendix of this toolkit. This information sheet can be given to the NDIA representative during your planning meeting. This will help them understand the impact of younger onset dementia. You can add personal information to this sheet - outline the symptoms you experience, how younger onset dementia has changed your life and how this impacts on your day-to-day life and your carer and/or family.
YOUR NDIS GOALS:
It is important to tell the NDIA about your goal/s. These will be listed in your NDIS plan to let the NDIA know what is important to you and what support you need. It is useful to prioritise your two main goals prior to your NDIS meeting.
When thinking about your goals, ask yourself questions such as:
• What are the things that are most important to me?
• What are the things I would most like to change?
• What would I like to do with less help from others?
• Are there new things I would like to try? You might have goals in different areas of your life including:
• Daily life
• Living arrangements
• Relationships
• Health and wellbeing
• Learning
• Work
• Social and community activities
• Choice and control
Dementia Australia has launched a new resource to support people living with younger onset dementia and their carers when navigating the National Disability Insurance Scheme (NDIS).
Dementia Australia thanks the NSW Department of Family and Community Services for funding this resource. The NDIS Toolkit for People Living with Younger Onset Dementia and their Carers can be accessed by clicking here or by calling the National Dementia Helpline on 1800 100 500.
14 November, 2017
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The Brain: Dementia reveals compelling progress towards understanding and treating this devastating condition.
Download now via the Queensland Brain Institute: https://qbi.uq.edu.au/files/26953/The-BRAIN-Dementia-QBI.pdf
World Alzheimer’s Day, 21 September, 2017.
DEFINITION: Dementia is not a single disease, but an umbrella term describing a collection of symptoms stemming from a range of conditions that cause the brain to progressively deteriorate. What distinguishes dementia from normal cognitive decline in ageing is that distinct brain areas are affected and this severely impacts the ability to carry out normal daily activities.
Many thanks for this most comprehensive study. This insight is vital for loved ones and their carers.
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Worried about your memory?
A new booklet to find out about the signs and symptoms of dementia, when you should be concerned, how you may be able to reduce your risk of dementia and where to get more help.
Read the Worried About Your Memory booklet now!
Or download just the "Worried about your memory" checklist
Note: the presence of the changes in the checklist does not necessarily mean you have, or will develop, Alzheimer’s disease or another type of dementia. See your doctor.
Physical exercise is essential for maintaining good blood flow to the brain and may encourage new brain cell growth and survival. This sheet outlines the role that physical exercise can play in reducing the risk of developing dementia and the benefits it offers to people with dementia.
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Ultrasound holds promise for Alzheimer's - Ultrasound can improve the delivery of a therapeutic antibody that targets Alzheimer's disease and could also help treat Parkinson's and motor neuron disease.
Source: AAP
Australian researchers say they have made a promising step in the future treatment of Alzheimer’s disease after discovering ultrasound can effectively and safely deliver drugs to the damaged brain. Scientists at the Queensland Brain Institute found the non-invasive technique successfully penetrated the blood-brain barrier to deliver a therapeutic antibody to the brain. This then slowed the progression of Alzheimer’s disease in mice, according to a study published in journal Brain.
One of the major challenges inhibiting the treatment of Alzheimer’s is that the majority of drugs designed to treat the brain disease don’t make it into the brain. “Ultrasound safely opens up the blood-brain barrier just a tiny bit and just for short time to let the antibody into the brain and importantly into the nerve cells where the damage occurs,” said professor Jurgen Gotz lead researcher at the QBI.
Alzheimer’s disease is the most common form of dementia, with the number of dementia cases in Australia expected to rise to 900,000 by 2050.
Upcoming Seminars in Queensland:
https://www.alzheimersonline.org/page/our-services/Education-Training/Workshops-and-Seminars/
Living with Memory Loss
Living with Memory Loss courses are run throughout the year and dates can be tailored to suit the needs of participants. Phone 1800 100 500
The Living with Memory Loss program is designed specifically for people in the early stages of dementia who want to share their experiences or feelings with others in the same situation. Participants are able to bring a carer, family member or friend with them if they like. The program provides accurate information about brain function and focuses on ways to help maintain a person's abilities as well as offering practical strategies for living with dementia.
There are also programs for people with younger onset dementia (diagnosis of dementia before the age of 65 years).
Cost: Free (funded by the Australian Government)
Suitable for: Participants must have a diagnosis of dementia or be accompanying a person with a diagnosis.
Content covered includes:
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Definition of Dementia:
Dementia is a collective name for progressive degenerative brain syndromes which affect memory, thinking, behaviour and emotion. Alzheimer's disease is the most common cause of dementia. Vascular dementia is second, followed by Lewy Body Dementia, Fronto Temporal Lobar Degeneration...
Help Sheets http://www.dementia.org.au/about-dementia/resources/help-sheets
Help Sheets are available on this page as PDF files which you can read, download, and print.
More latest videos
For an in-depth look, click on areas of your interest in the UpToDate site. Take a look also at more in-depth info on Alzheimer's and other Dementia's.
Dementia is a general term used to indicate that a person has developed difficulties with reasoning, judgment, and memory. People who have dementia usually have some memory loss and difficulty with at least one other area, such as:
● Speaking or writing coherently (or understanding what is said or written)
● Recognizing familiar surroundings
● Planning and carrying out multi-step tasks.
In order to be considered dementia these changes must be severe enough to interfere with a person's independence and daily activities.
Dementia can be caused by several diseases that affect the brain. The most common cause is Alzheimer disease. Alzheimer disease accounts for 60 to 80 percent of all cases of dementia.
You can access the FREE Beyond the Basics (English) patient content in UpToDate by simply typing a term or phrase in the Search UptoDate box RH top. Look up your specific question — anything from a symptom you're concerned about to a condition or treatment you've been discussing with your healthcare provider.
Remember to print the information you find in UpToDate so you can discuss it with your healthcare provider.
with many thanks to UpToDate for giving access to this vital information for patients, their family and carers. It is Very much appreciated.
DementiaKT Hub
a NEW 'one-stop shop' to boost your dementia knowledge and practice by the Dementia Collaborative Research Centres.
Access resources:
The main body of each module provides behaviour specific information relevant to the following aspects:
http://www.dementiaresearch.org.au/images/dcrc/output-files/328-2012_dbmas_bpsd_guidelines_guide.pdf
The aim of this document is to provide guidance for DBMAS clinicians in their role of assisting residential aged care facility staff, community care staff and family members caring for persons living with dementia, who present with behavioural and psychological symptoms of dementia (BPSD). A comprehensive evidence and practice-based overview of BPSD management principles is provided with practical strategies and interventions for assisting care staff and family carers to manage behaviours in dementia. The empirical evidence contained in this Guide to Good Practice, in combination with clinical expertise may assist in achieving improved outcomes for those with dementia.
A description of the behaviour and how it presents in dementia
Causes
Differential diagnosis
Measuring the behaviour
Prevalence
Effects on the person with dementia and others living with them or involved in providing care
Results from the literature search
Management strategies and the quality of the supporting evidence available for specific interventions for the BPSD
o Psychosocial and environmental interventions
o Biological interventions
Limitations of the evidence presented
Conclusions
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Dementia is a medical condition:
Main Features of Dementia:
Communication:
Communication relating to feelings and attitudes is made up of three parts:
with many thanks to Marnie Combers, Occupational Therapist, Alzheimer's Queensland, who's understanding of the condition is second to none.
Alzheimer’s disease symptoms- the most common cause of dementia:
In early July 2017, the Alzheimer’s Association International Conference (AAIC) was held in London, bringing together a consortium of dementia researchers from around the globe. Of interest at the AAIC this year, were several new research studies linking sleeping disorders with Alzheimer’s disease.
While it isn’t new to suggest that sleeping disorders are linked with Alzheimer’s disease, this new research has added weight to the finding after analysing data from close to 800 participants from the Alzheimer’s Disease Neuroimaging Initiative (ADNI). This database contains brain scans, cognitive assessments, biomarkers, and demographic information from people with Alzheimer’s disease patients, individuals with mild cognitive impairment (MCI) and control groups.
Of specific interest in their study, the American based researchers were looking at the potential effects of sleep disordered breathing and Obstructive Sleep Apnoea on brain health, particularly in those diagnosed with either MCI or Alzheimer’s disease.
https://www.dementiadaily.org.au/a-good-nights-sleep-important-for-brain-health/
Dementia and Chronic conditions very well described at https://www.dementia.org.au/about-dementia/resources/dementia-and-chronic-conditions
There is increasing evidence that a number of different chronic conditions are associated with the development of cognitive impairment and dementia. Alzheimer’s Australia Victoria has developed the Dementia and Chronic Conditions Series Toolkits to improve support for people living with cognitive impairment or dementia and other chronic conditions. These resources will assist people working in the community, partners, families and carers to provide better support to the person in areas such as diagnosis of dementia and on-going management of their health.
If a feeding tube is recommended to deal with difficulty swallowing (as often happens to someone with severe dementia), think long and hard before giving the green light. Although feeding tubes are common practice in late-stage dementia, they haven't been shown to improve functional or nutritional status -- or to prolong life.
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on the Gold Coast:
Talking informally with other Carers Does Help!
Angels Carer Support Group. Held the last Tuesday of each month at St. Paul's Anglican Church Hall, 69 Palm Beach Ave, PALM BEACH
Held at St. Paul's Anglican Church Hall, 69 Palm Beach Ave, PALM BEACH -
Come just after 1.00pm for that cuppa and a chat. Often we have Speakers on subjects of interest to us as Carers - they start about 1.15pm and go to about 3.00pm. Other times we just sit, relax and enjoy each other's company and support each other as we face the daily caregiving tasks. Sit and chat, and take a brief break - for YOU :-) Father Phillip is a Great Supporter of the Angels.
YOU are most welcome to join us :-) Do take CARE of YOU too...
and to find out what else is going on in the Palm Beach area: http://palmbeachgoldcoast.net.au/events/
Living on the Gold Coast? Our Angels Carer Support Group are being helped by these Tradespeople... Those who are Caring for others give all of their time 24/7 for the well-being of their loved one. It is a relentless, loving and all exhausting time in their lives, and those for whom they care... Rob Cinelli of LJ Hooker, Shop 2/10 Fifth Avenue, Palm Beach Qld 4221 has been helping us with practical help and suggestions... It is making our lives that much easier. When you ring, do thank Rob Cinelli and his staff for their ongoing support of the Angels Carer Support Group, and let him know that he is Valued...
Upcoming Seminars in Queensland:
https://www.alzheimersonline.org/page/our-services/Education-Training/Workshops-and-Seminars/
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and for that extra peace of mind:
Brochures from the Public Trustee in Qld to help explain Enduring Power of Attorney for Financial, Personal and Health Matters...
Download the appropriate Brochures from this site:
https://www.flipsnack.com/publictrusteeqld/lets-talk-about-enduring-powers-of-attorney.html
To find out more:
http://www.pt.qld.gov.au/enduring-powers-of-attorney/about-enduring-powers-of-attorney/
CALL US: 1300 360 044
or Make An Enquiry: [email protected]
06 September 2021
What are the different models of dementia care in Australia?
Whenever discussing dementia, it is important to hold space for those who have received a dementia diagnosis or have had a loved one diagnosed. It can be a daunting and overwhelming time, wrapping your head around what this means, the emotions and changes set to happen and how to manage it.
While just a starting point, going through the different models of dementia care that are used in Australia may help in navigating next steps and seeing the choices available.
Understanding the options and choices can go a long way to finding a safe, human centred approach to dementia care that works for those that need and deserve it most.
then:
https://www.myagedcare.gov.au/types-care
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20, 2021 HEALTH & CARE DEMENTIA
What is the difference between Alzheimer’s and dementia?
When an elderly person shows signs of becoming forgetful, their friends and family may jump to the conclusion they have some form of dementia. It can be a worrying time for all involved. But becoming forgetful does not necessarily mean a person has dementia. It may be nothing, or it could be a sign of infection, other medical conditions or simply that you are doing too much or have significant stress in your life.
It’s important to understand the difference between Alzheimer’s disease and dementia, in order to understand a diagnosis and receive the correct treatment. Dementia is the umbrella term used to describe a number of symptoms that are associated with memory loss and cognitive decline, while Alzheimer’s is a disease that actually causes dementia.
The failure of some people to distinguish between the two conditions can cause confusion.
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Dementia in Practice
https://omny.fm/shows/dta/playlists/dementia-in-practice
Playlist by Dementia Training Australia
Listen as GPs talk about dementia, its types, diagnosis, management, impacts and more...
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by Staff Writers October 12, 2021
POSTED IN DEMENTIA
Program points way forward after dementia diagnosis
https://communitycarereview.com.au/2021/10/12/program-points-way-forward-after-dementia-diagnosis/
and
https://www.forwardwithdementia.org/au/
"Living positively after diagnosis"
In the past, people were told nothing could be done. They may have been given some medication, asked to return in six months, told to get their affairs in order and warned about driving. Those days are over,” says project leader Professor Henry Brodaty from UNSW Sydney’s Centre for Healthy Brain Ageing.
“People with dementia can live positively for many years. There are treatment strategies and we need to spread the word and assist diagnosticians and other health workers to improve their practice.
“By working together, we can help set people newly diagnosed with dementia on a better path.” Program resources, developed with the help of people living with dementia and their carers, include a website to guide people in the first year following diagnosis. The website offers information, advice, and tools, and shares experiences and strategies used by people with dementia and their carers.
Practical advice
Professor Lee-Fay Low from the University of Sydney says the website provides the information newly diagnosed people with dementia said they wanted and needed but struggled to find after a diagnosis. “They told us that much of the available information was too generic, and mostly focused on more severe dementia. It was hard to find practical advice about what they should do after diagnosis, like how they could get rehabilitative treatments and maintain their independence,” she said. “So this is what we have aimed to provide.”
Supporting doctors
Resources include a checklist of questions for people to ask their doctor, suggestions for how and when to share their diagnosis with family and friends, and planning tools to achieve their goals and overcome barriers caused by dementia symptoms. Many doctors find telling people they have dementia very difficult, Professor Brodaty says. “We’ve consulted with diagnosticians throughout Australia, including specialists and support staff in memory clinics,” he said.
“We’re trying to improve communication and encourage doctors to start dementia care planning and make referral to essential services, including counselling and allied health.”
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What is dementia?
Dementia refers to a range of symptoms that are the result of a deterioration of brain function.
The symptoms associated with dementia include:
- loss of memory,
- problems with thinking, learning, memory and language,
- behavioural and emotional problems, and
- difficulties performing daily activities.
- vascular dementia,
- dementia with Lewy bodies,
- dementia from Parkinson’s disease,
- frontotemporal dementia,
- Creutzfeldt-Jakob disease, and
- Alzheimer’s disease.
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blog-how-do-i-know-if-i-have-dementia/
Written by: Lifted Team 25 February 2020
A question that I am often asked is: “How do I know if I have dementia?” Since the prevalence of dementia is increasing, people are worrying more about developing the condition, especially if they have already experienced dementia in their family and have witnessed the consequences.
Dementia Support Australia
Providing help 24/7, 365 days a year across Australia for carers of people living with dementia where behaviours are impacting on care.
Dementia Support Australia provides three levels of support:
- Dementia Behaviour Management Advisory Service (DBMAS)
- Severe Behaviour Response Teams (SBRT)
- Needs Based Assessment Program (NBA)
Contact:Phone: 1800 699 799
Email: [email protected]
Online: dementia.com.au
Chat: www.dementia.com.au
Dementia cases expected to double by 2058, says comprehensive AIHW report
A major report on dementia from the Australian Institute of Health and Welfare (AIHW) was released this week, finding that dementia is the second leading cause of death in Australia and the number of people developing the disease is growing at an alarming rate.
Posted September 23rd 2021 by Liz Alderslade
It is expected that by 2058, dementia cases will double to 849,300 Australians from the estimated 386,000 - 472,000 people living with dementia in 2021.
The Dementia in Australia report was launched by the Minister for Senior Australians and Aged Care Services, Richard Colbeck on Monday. Also announced at the launch was the establishment of AIHW's National Centre for Monitoring Dementia.
The aim of the Centre is to undertake routine monitoring of dementia, find data gaps and address them, and help inform policy that meets the needs of Australians with dementia. Minister Colbeck says, "The report demonstrates the Institute’s expertise in producing the information and statistics that underpin our world-leading health and welfare systems. "Health and aged care policy is always the better for being informed timely and accurate data and information. This is a valuable report that provides an updated comprehensive picture of dementia and its impacts on Australia’s health and aged care sectors."
AIHW says this was the first comprehensive report on dementia since 2012 and showcases the latest health impacts of dementia on the population, carers and care needs, health and aged care service use, and dementia cost.
Dr Fleur de Crespigny, spokesperson for AIHW, says, "Dementia is an umbrella term for a large number of conditions that gradually impair brain function. It poses a substantial health, aged care and societal challenge and with Australia’s rapidly ageing population, it is predicted to become an even bigger challenge in the future. "Dementia was responsible for about 14,700 deaths in 2019 – accounting for 9.5 percent of all deaths that year. It was the second leading cause of death in Australia, behind coronary heart disease, and it was the leading cause of death among women (around 9,200 deaths in 2019).
"Estimates of the number of people in Australia living with dementia in 2021 range from 386,200 to 472,000. Using the AIHW estimate of 386,200, the number of Australians living with dementia is expected to more than double to 849,300 in 2058."
Ageing can increase your likelihood of developing dementia, however, dementia is not an inevitable part of ageing. One in 12 Australians aged 65 and over live with dementia and this number increases to two in five Australians aged 90 and over. Additionally, two-thirds of people with dementia are women.
To view the whole report, visit the Australian Institute of Health and Wellbeing website.
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Heavy toll
Study leader Professor Lily Xiao from Flinders University says caring for someone with dementia can take a heavy toll on emotional and physical health.
“(Carers) receive less education and limited ongoing support than professional carers do, and this can leave them feeling socially isolated due to the time spent caring for their loved one, stigma and the lack of quality social networks,” Professor Xiao says.
“Carers experience stress, poor health and poor quality of life, and this can contribute to the person they care for being permanently admitted to a nursing home earlier than they would if greater support for them existed.”
https://communitycarereview.com.au/2021/08/04/home-care-providers-to-trial-carer-support-program/
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https://www.dementia.org.au/sites/default/files/helpsheets/Helpsheet-LookingAfterFamiliesAndCarers01-TakingABreak_english.pdf
Taking a break is important for families and carers Caring for someone with dementia can be physically and emotionally tiring and stressful. Families and carers can easily become isolated from social contacts, particularly if they are unable to leave the person they are caring for. Regular breaks mean that you can have a rest, go out, attend to business or go on a holiday.
For further information and enquiries please contact:
National Dementia Helpline
1800 100 500
Find us online
dementia.org.au
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For people living with dementia, their families and carers
The Dementia Guide is an important resource for any person impacted by any form of dementia, of any age. The Dementia Guide can help anyone learn about dementia and the treatments, support and services available.
The Dementia Guide may also be useful to the friends, families and carers of people living with dementia, as it contains information about the impact dementia may have on a person, the treatment, support and services they may need, as well as for anyone taking on a caring role.
You can download a free digital version or order a printed copy of the Dementia Guide.
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Difficulty concentrating with dementia
Written by Lifted Team 5 August 2020
Struggling to keep track of conversations, zoning out and forgetting what they were doing, finding it harder to focus on day-to-day tasks. No two people experience dementia in the same way, however, difficulty concentrating is a challenging symptom that most people share.
As dementia progresses, the attention someone can give to a task, a topic, or goal-orientated behaviour (such as finishing all the dishes, or counting out the correct money), reduces.
At first, people may seem more distracted doing tasks they used to breeze through, such as finishing their favourite crossword or planning a journey. In the later stages, people may find it hard to engage in the most basic of tasks; such as dressing themselves, or making a cup of tea.
While it’s upsetting to see someone’s concentration decline, there are ways in which you can help your loved one feel more at ease with the changes dementia brings. And while there’s little evidence that brain exercises slow the decline, being aware and prepared will help both the person you love and your family feel better placed to deal with the effects pro-actively.
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Expert group investigates link between COVID and dementia
by Judy Skatssoon September 1, 2021
International dementia experts have formed a consortium to study the link between covid-19 and dementia, amid growing evidence the virus could increase the risk of dementia and accelerate progression of the disease.
Dr Alireza Atri - Research is coming to light that suggests the neurological impact of covid-19 can increase the risk of cognitive decline in later life, prompting the formation of the group representing 30 countries earlier this year.Chairman of Alzeheimer’s Disease International’s Medical and Scientific Advisory Panel (MSAP) and Director of the Banner Sun Health Research Institute in the US, Dr Alireza Atri, says he’s seen clear links between ‘long-covid’ and dementia in his own clinic and research.
A ‘Trojan horse’
He fears Covid could be a ‘Trojan horse’ for dementia.“Covid-19 can cause damage and clotting in the brain’s micro vessels, immune dysfunction and hyperactivation, inflammation, and, last but not least, direct viral brain invasion through the olfactory pathways,” Dr Atri says.
“With the blood-brain barrier damaged, our brain’s fortress is breached.
“Simply put, if you have a fortress and an enemy puts holes in your walls, you’re less likely to be able to withstand current and future attacks.
“COVID-19 opens the gates in the same way that the Greek soldiers hiding in the wooden horse did. It gives easier access to things that can harm your brain.”
Dr Atri says experts are particularly concerned about the neurological symptoms of ‘long-covid-19’ including cognitive problems like ‘brain fog’ and difficulties with concentration, memory, thinking and language.
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Medicines and dementia: what you need to know just click on the links on the RHS :-)
Medicines do not have to be part of your care plan for dementia, nor play a large role in your life.
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NATIONAL DEMENTIA HELPLINE:
1800 100 500
About the helpline
Alzheimers Center A-Z List for a greater understanding of the often confusing Dementia symptoms:
http://www.medicinenet.com/script/main/alphaidx.asp?p=a_35
or
- helpline webchat http://www.dementia.org.au/helpline/webchat
Would you like to chat online?
The National Dementia Helpline’s Webchat is a typed online conversation with a Dementia Advisor who can provide information about dementia and services.
Before starting Webchat, you will be asked to provide some basic information about yourself to help the Advisor during the conversation.
Please note that Webchat is not a counselling service. If you wish to cover multiple dementia related issues or seek emotional support please call the Helpline on 1800 100 500.
Operating hours - Webchat operates between 9.00am and 5.00pm EST, Monday to Friday excluding public holidays.
Out of hours assistance When Webchat is not available, we will contact you the next business day if you:
- call us on 1800 100 500 and leave a message
- send us an email now
- use our call-back request form
Only you and the Dementia Advisor can see your online conversation, however we will need to record some of your details for statistical and reporting reasons. For more information about how we use and store your personal information, please read our privacy policy.
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Dementia Behaviour Management Advisory Service (DBMAS)
https://dementia.com.au/services/dementia-behaviour-management-advisory-service-dbas
DBMAS is a support service for people with dementia who are experiencing changes in behaviour that impact their care or the carer.
The service supports staff and carers in community, residential aged care, acute and primary care settings with expertise, advice and short-term case management interventions.
Support is provided through:
- 24/7 contact with a Dementia Consultant on 1800 699 799 for advice or to make a referral. Very Good!!!
- Phone or in person assessment and support of the person living with dementia and their environment
- Communication with the Carer/support network to gain knowledge of them as a person.
- Advice, strategies and written recommendations tailored specifically to the individual, including those from diverse communities and life experiences.
- On-going support and guidance to implement the recommendations and adaptations to those recommendations.
- Increased staff knowledge through modelling of the strategies and recommendations.
- Access to current research and guidelines
- Referrals to other DSA services
Dr Katya Numbers from the Centre for Healthy Brain Ageing (CHeBA) discusses how the COVID-19 pandemic has posed unique risks to people with Alzheimer's disease and dementia. Dr Numbers' research has revealed people living with dementia have a relatively high risk of contracting severe COVID-19 and are also at risk of neuropsychiatric disturbances as a result of lockdown measures and social isolation.
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Sep 24, 2021 HEALTH & CARE DEMENTIA
New research detects early signs of Alzheimer’s with almost 100% accuracy
https://hellocare.com.au/new-research-detects-early-signs-of-alzheimers-with-almost-100-accuracy/
Researchers in Lithuania have developed an algorithm that can detect the early signs of Alzheimer’s disease with almost 100% accuracy.
Mild cognitive impairment (MCI) is often an early sign of Alzheimer’s disease, and though it usually has no clear symptoms early on, it can sometimes be identified with brain scans – known as functional magnetic resonance imaging (FMRI) – even before symptoms appear. However, identifying MCI with FMRI is both time consuming and expensive.
Now researchers have used deep learning technology – a type of artificial intelligence – that could potentially speed up the process, and they are able to detect MCI with better than 99% accuracy. The research involved using a deep learning model to classify thousands of images of the brains of 138 subjects with various stages of MCI. The model was able to identify MCI accurately in more than 99% of cases.
“Although this was not the first attempt to diagnose the early onset of Alzheimer’s from similar data, our main breakthrough is the accuracy of the algorithm,” said Rytis Maskeliūnas, of Kaunas University of Technology, one of the report’s authors and supervisor of the team running the model.
The aim is for the algorithm to be developed into software that could analyse data from vulnerable groups, such as the over 65s, those with a history of brain injury or those with high blood pressure.The software could be used to pick up anomalies that could enable earlier diagnoses of Alzheimer’s. The researchers say the algorithm should not be relied upon alone for a diagnosis, but it can provide useful information quickly and affordably, meaning the patient can have a diagnosis and treatment more quickly.
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June 04, 2021
DEMENTIA The 3 most common types of dementia
Dementia Statistics – Australia
Dementia is the second leading cause of death according to the 2016 statistics of Dementia Australia. In 2021, there are an estimated 472,000 Australians living with dementia[3] Without a medical breakthrough, the number of people with dementia is expected to increase to 590,000 by 2028 and 1,076,000 by 2058.
Whilst the condition is more common in older people, it affects young people also. This year, there are an estimated 28,300 people with younger onset dementia, expected to rise to 29,350 people by 2028 and 41,250 people by 2058.
The incidence of dementia increases as we grow older, from the age of 65 years, 1 in 10 people are reported to be diagnosed – with a significant increase at the age of 85 years to 3 in 10 people.
Having said this, it’s important to remember that dementia is not a ‘normal’ part of ageing, and if you do have concerns about your memory or someone close to you, we suggest seeking professional advice from a General Practitioner (GP). If you are still concerned about your memory after the visit to the GP, then request a second option and ask to see a neurologist, neuro-psychologist or geriatrician just to make sure.
Too hot or too cold: Managing changing temperatures with dementia
https://www.liftedcare.com/too-hot-or-too-cold-managing-changing-temperatures-with-dementia
As we age, we all become more susceptible and sensitive to fluctuations in heat. Many factors contribute to this, including slower metabolic rates, less fat to insulate our bodies, thinner skin and blood vessels, slower circulation and lower levels of activity. What’s more, many people prescribed a combination of certain medications can find that they have more difficulty regulating heat than others.
But for those living with dementia and Alzheimer’s, on top of these factors, there are even more reasons to keep an eye on hot and cold weather.
Do changes in temperature make dementia symptoms worse?
Since dementia and Alzheimer’s can affect the control centres in the brain; there’s more reason to believe that people living with these diseases could be more sensitive to hot and cold conditions.
This thinking has recently been backed up by research from the Dementia Research Centre in London, linking FTD (Frontotemporal Dementia) to increased sensitivity to outside stimulation. This sensitivity can be both physical and environmental, including things such as sound, light and environmental factors like temperature.
What’s more, studies carried out in some care homes where people with dementia were living, found that when temperatures ranged beyond their usual 18-22 degrees Celsius, some of the residents seemed more stressed and aggravated.
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June 17, 2021 HEALTH & CARE DEMENTIA
Why people with dementia don’t all behave the same
Dementia is the leading cause of death among Australian women and the third most common cause of death among men.
While dementia is not a normal part of ageing, the biggest risk factor for dementia is advancing age. Given ours is an ageing population, estimates suggest dementia cases are set to almost triple by 2050.
Many people associate dementia with memory loss, so it may come as a surprise that dementia is a killer. So, what does it do to the body to make this happen?
The brain is our control centre
Everything we do is controlled by the brain. It generates the instructions that tell our body parts what to do, as well as facilitating our complex behaviours, such as personality and cognition (our ability to think, understand and do things).
When a person has dementia, neurons in various parts of their brain stop communicating properly, disconnect and gradually die. We call this process neurodegeneration.
Dementia is caused by progressive neurodegenerative diseases. This means the disease starts in one part of our brain and spreads to other parts, affecting more and more functions in the body.
Certain causes of dementia will impact different parts of the brain, and the symptoms a person with dementia develops will depend on what part of their brain is affected.
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Australian Researchers Develop Hydrogel to Combat Parkinson's
Australian National University via Reuters
"Researchers have developed a gel made up of amino acids, which can be injected into the brain to help repair damage. When shaken, the hydrogel transforms into a liquid, making it easier to be inserted into the brain through a small capillary. The gel then reverts to its solid form, filling up irregularly shaped voids and helping to safely transport replacement stem cells to injured parts of the brain.
'The real game-changer here is it's sort of a one-off intervention,' Australian National University Professor David Nisbet said.
The gel has been tested so far only on animals and has been effective in combating movement disorders of Parkinson's disease in rats. Nisbet hopes clinical trials will start in the next five years, after the gel has proven safe for human use. Nisbet added the hydrogel was also relatively cheap to produce and could be scaled up to mass production relatively easily once the materials were approved for clinical use."
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Genes Mutated in Parkinson’s Linked to Mitochondrial Recycling in Neurons
Science Advances via GEN
“This work gives us unprecedented insight into mitochondria’s life cycle and how they are recycled by key proteins that, when mutated, cause Parkinson’s disease,” Ken Nakamura, researcher, commented. “It suggests that mitochondrial recycling is critical to maintaining healthy mitochondria, and disruptions to this process can contribute to neurodegeneration … Our future studies will investigate how these pathways contribute to disease and how they can be targeted therapeutically.”
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Chemists Find an Effective Remedy for Diseases Such As Alzheimer’s and Parkinson’s
European Journal of Medicinal Chemistry via SciTechDaily
"Russian scientists have synthesized chemical compounds that can stop the degeneration of neurons in Alzheimer’s, Parkinson’s, and other severe brain pathologies. These substances can provide a breakthrough in the treatment of neurodegenerative pathologies.
New molecules of pyrrolyl- and indolylazine classes activate intracellular mechanisms to combat one of the main causes of “aged” brain diseases – an excess of so-called amyloid structures that accumulate in the human brain with age. According to scientists, the use of pyrrolylazine in rehabilitation therapy allowed the tested animals to avoid the appearance of movement disorders and degeneration of hippocampal neurons. The research team has been continued to study the mechanism of action of new compounds and is preparing for their preclinical testing."
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June 29, 2021
HEALTH & CARE DEMENTIA Do diet drinks increase the risk of stroke and dementia?
Led by Dr Matthew Pase, a Boston University School of Medicine neurologist, the study showed that there may be a connection between diet soft drinks and both stroke and dementia. The study suggests that people who drink diet beverages daily are three times as likely to have a stroke or develop dementia versus people who drink it once a week or less. “This included a higher risk of ischaemic stroke, where blood vessels in the brain become obstructed and Alzheimer’s disease, the most common form of dementia,” Dr Pase said.
Alzheimer’s usually begins with mild memory loss.
When an elderly person shows signs of becoming forgetful, their friends and family may jump to the conclusion they have some form of dementia. It can be a worrying time for all involved.
But becoming forgetful does not necessarily mean a person has dementia. It may be nothing, or it could be a sign of infection, other medical conditions or simply that you are doing too much or have significant stress in your life.
It’s important to understand the difference between Alzheimer’s disease and dementia, in order to understand a diagnosis and receive the correct treatment. Dementia is the umbrella term used to describe a number of symptoms that are associated with memory loss and cognitive decline, while Alzheimer’s is a disease that actually causes dementia.
The failure of some people to distinguish between the two conditions can cause confusion.
What is dementia?
Dementia refers to a range of symptoms that are the result of a deterioration of brain function.
Other symptoms may include:
- having trouble recalling events,
- difficulty learning new things
- trouble finding the right word,
- trouble solving problems,
- trouble making decisions,
- difficulty perceiving three-dimensional objects, or
- being irritable.
Is there a cure? While both dementia and Alzheimer’s are associated with the cognitive decline that often accompanies ageing, they are not considered a normal part of ageing. Other forms of dementia and Alzheimer’s get worse over time, and unfortunately there is no cure. Medications are sometimes used in the treatment of dementia, but they can only slow the condition’s progress or treat symptoms; they will not cure dementia.
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What is Anticipatory Grief?
29 July 2021 Rachael's recent interview with psychotherapist, Julis Samuel, explored many issues associated with 'Anticipatory Grief'
Rachael's Anticipatory Grief is grief that is experienced by families whilst a person is still alive. For people with dementia, this type of grief is characterized by multiple losses which occur as the person's condition worsens and causes greater difficulties and dysfunctions.
Family roles and relationships change. Family carers face an unpredictable future. There are new challenges week after week and the emotional and physical demands take a toll on their health. Loss of the companionship of a life partner – loss the future that might have been – is particularly tough to bear for carers. Healing is inhibited and recovery put on hold because the ‘lost’ companion is still there, still looking like they always did, still ever present and in need of constant support and unconditional love. This makes grief complicated for family carers, the grieving process is disrupted, powerful feelings become buried and remain unresolved.
It is widely recognised that the emotional demand of caring has a significant impact on the mental health of family carers. Taking care of one’s own needs is vital – but this is harder said than done. Many carers become so absorbed with caring tasks, making every effort to pre-empt problems and meet the needs of the person they are caring for – whilst also running a household, managing finances, keeping in touch with family members – they lose sight of their own needs and wishes, and even their sense of individual identity.
Seeking support is crucially important. Family carers do not set out to become carers. It’s a role that develops from a pre-existing relationship – spouse, daughter, son, sibling. Many carers do not describe themselves this way; they take on caring responsibilities because they want to, or because they love their relative, or because it’s expected of them. Maybe it’s for a mix of these reasons, maybe for other reasons too. It’s natural to feel ambivalent about being a carer.
Caring can also be a hugely rewarding experience. I have known family carers reflect on how dementia has enabled deeper connections with their loved-one, revealing insights hitherto unseen and opening up new possibilities.
One couple I knew – Graham and Sarah – took every opportunity to participate in activities designed to help people with dementia and family carers to engage in the arts, culture and nature.
Graham had dementia, Sarah was his primary carer. For five years after Graham’s diagnosis, they had the busiest time of their 30 years of married life, doing everything together. They re-discovered each other’s qualities and learnt now things about themselves. Their relationship developed in ways that would never have been possible if their lives had carried on as before.
Graham has now died. Sarah reflects on the roller-coaster journey. Naturally she is heartbroken to have lost him, but she doesn’t regret what happened. Of course, she wishes that Graham had never developed dementia, but, given that he did, she says, “We had the most wonderful 5 years together, explored new places, met so many wonderful people. It’s been bitter-sweet, beautiful turmoil”.
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One of the most positive benefits for Sarah was meeting other carers. Of all the help she received, the support of other carers was the greatest source of strength. Several carers that Sarah met through dementia organisations and support groups are now her friends in her life in recovery. The shared experience of caring for, and ultimately losing, a loved one with dementia is meaningful and sustaining.
Brain’s Lymphatic System Tied to Alzheimer’s Symptoms in Mice
A dysfunctional lymphatic system, described as a clogging of the brain’s sink, may explain why immunotherapies fail in some Alzheimer’s patients.
Amanda Heidt May 4, 2021 SANDRO DA MESQUITA
A damaged drainage system in the brain might be behind the spotty performance of some Alzheimer’s therapies, according to a study published April 28 in Nature. Mice modeling the neurodegenerative disorder that received plaque-busting antibodies along with a treatment to stimulate the growth of lymphatic vessels in the brain saw many of their symptoms reversed. Mice with damaged lymphatics, on the other hand, didn’t respond as well to the antibodies. This suggests that dysfunctional lymphatics might hinder the performance of antibody-based immunotherapy, an approach that has had mixed results in clinical trials among Alzheimer’s patients.
https://www.nps.org.au/australian-prescriber/articles/limiting-antipsychotic-drugs-in-dementia
Limiting antipsychotic drugs in dementia
- Stephen Macfarlane, Colm Cunningham Aust Prescr 2021;44:8-11 1 February 2021
Antipsychotic drugs are widely prescribed for people living with dementia. This is despite a high adverse effect burden and limited evidence of efficacy.
Most behavioural and psychological symptoms will subside spontaneously within six months. Trials of deprescribing are therefore recommended.
Behaviours should be seen as symptoms that have an underlying cause. Treatment should target these causes, rather than the resultant behaviours.
See “Infographic: How Cytokines Flow into and out of the Brain” Mice that had their lymphatic vessels ablated developed plaques more quickly, responded more poorly to the antibody therapies, and performed worse on cognitive tests such as finding a platform submerged in water, compared with mice that had their lymphatic systems intact. Using tracers, the team showed that a damaged lymphatic system both limited the number of antibodies making it into the brain from the CSF and mucked up the drainage of toxic breakdown products to the lymph nodes. The mice’s poor performance on a battery of cognitive tests suggests that faulty drainage may partially explain the mental decline that marks the disease, Kipnis tells The Scientist.
Coronavirus Is Four Times More Deadly In People Living With Dementia
By Rianna Manuel. Feb 10, 2021
https://hellocaremail.com.au/coronavirus-four-times-deadly-people-living-dementia/
Te study, published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, found that people living with dementia who contract coronavirus have far worse outcomes in terms of hospitalisations and deaths than people without dementia who catch coronavirus.
Dementia services are “fragmented, challenging to navigate and hard to access”
By Caroline Egan. Feb 3, 2021
Leading Australian dementia researchers say it is difficult for Australians to obtain a dementia diagnosis, and for carers and those living with the disease to access high-quality, coordinated support services.
See “The Hunt for a Blood Test for Alzheimer’s Disease”
First Alzheimer’s Blood Test Rolled Out for Clinical Use in US
The test will be a cheaper and more accessible alternative to currently available diagnostic tools, researchers say. Shawna Williams Nov 2, 2020
If you asked me [five or ten] years ago if there would ever be a blood test for Alzheimer’s, I would have been very skeptical,” says Howard Fillit, the executive director and chief science officer of the Alzheimer’s Drug Discovery Foundation, which invested in C2N’s development of the test. “So the fact that this is on the market now is just amazing.” Fillit wasn’t alone in thinking that, due to the blood-brain barrier, biomarkers from the brain wouldn’t be found in peripheral blood in sufficient quantities to deliver a diagnosis. But analytical techniques have advanced in sensitivity in recent years, allowing small amounts of biomarkers in the blood to be detected.
The C2N test relies on the ratio of two isoforms of the amyloid-β protein, Aβ42 and Aβ40, that aggregate to form amyloid plaques in the brain, combined with the presence of isoforms of apolipoprotein E (ApoE) that reflect whether the patient caries a genetic variant associated with Alzheimer’s risk. The results are combined into a score that indicates the probability that a patient would be found to have amyloid plaques if they were to undergo an amyloid PET scan. Doctors can then consider the test results along with other information about the patient to arrive at a diagnosis. According to data posted on the company’s website, a study in 686 patients with cognitive impairment found that those with scores above a certain cutoff point had a positive amyloid PET scan 92 percent of the time, while those with scores below a certain cutoff had a 77 percent chance of having a negative result on the PET scan.
While no drugs have yet been approved to treat Alzheimer’s, being able to distinguish it from other possible causes of cognitive impairment is nonetheless valuable, Fillit and Schindler say. As a clinician, Schindler says, “I want to know what my patients have.” That can be complicated because in many cases, “they don’t just have memory impairment, they’re taking multiple medications, they have all sorts of health issues,” she says. “And sometimes it’s really hard to know whether the symptoms they’re experiencing are due to something like Alzheimer’s or something else.”
Poor Sleep Linked with Future Amyloid-β Build Up
Accumulation of the protein was more likely to be found in the brains of people who slept less well years earlier, according to a new study. Abby Olena Sep 11, 2020
There’s evidence in people and animals that short-term sleep deprivation can change the levels of amyloid-β, a peptide that can accumulate in the aging brain and cause Alzheimer’s disease. Scientists now show long-term consequences may also result from sustained poor sleep.
Getting enough S L E E P...
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https://www.the-scientist.com/news-opinion/serotonin-and-dopamine-linked-to-decision-making-study-68050
Serotonin and Dopamine Linked to Decision-Making: In a first-of-its-kind study, researchers monitored subsecond changes in levels of the neurotransmitters in the human brain, unlocking new insight into their function.
Amanda Heidt Oct 16, 2020------------------------------------------ 000000000000000000000 --------------------------------------
Tim Hanks, a neuroscientist at the University of California, Davis, who was not involved in the study, tells The Scientist. “There’s a growing recognition that [dopamine and serotonin] have more refined and nuanced roles than what may have once been believed, and this study really makes that case clear in human decision-making.”
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New form of dementia discovered, redefining mainstream Alzheimer’s science
https://academic.oup.com/brain/article/142/6/1503/5481202#134309659
"…those of us who work in dementia have long been puzzled by our patients who have all the symptoms of Alzheimer's disease, but whose brains do not contain the pathological features of the condition," says University College London's Robert Howard, who did not work on this new study. "We have also been puzzled by a group of often very old patients whose dementia does not progress as rapidly as we would expect with Alzheimer's disease. We now know that these puzzling patients are probably suffering from LATE and not Alzheimer's disease and that LATE may be "mimicking" Alzheimer's in about 20 percent of cases."
Howard calls this new research, "probably the most important paper to be published in the field of dementia in the last five years," and says it should have major implications in how future drug trials for Alzheimer's disease are planned. Peter Nelson, corresponding author on the new research, agrees and suggests this broadening of our understanding into the causes of dementia will demolish the prior one-size-fits-all approach.
By Rich Haridy
April 30, 2019
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The cognitive effects of prolonged social isolation
https://www.the-scientist.com/features/how-social-isolation-affects-the-brain-67701
THE ISOLATED BRAIN
Studies of animals and people experiencing isolation have identified several brain structures that appear to be affected by a lack of social interaction. Although these studies can’t identify causal relationships—and don’t always agree with one another--they shine a light on some of the mechanisms by which physical isolation, or feelings of loneliness, could impair brain function and cognition.
In 1972, French adventurer and scientist Michel Siffre famously shut himself in a cave in Texas for more than six months—what still clocks in as one of the longest self-isolation experiments in history. Meticulously documenting the effects on his mind over those 205 days, Siffre wrote that he could “barely string thoughts” together after a couple months. By the five-month mark, he was reportedly so desperate for company that he tried (unsuccessfully) to befriend a mouse.
This kind of experiment, and less extreme isolation periods such as those experienced by spaceship crews or scientists working in remote Antarctic research stations, has offered glimpses of some of the cognitive and mental effects of sensory and social deprivation. People routinely report confusion, changes in personality, and episodes of anxiety and depression. A crueler version of those experiments is continually underway in prisons across the world. In the US alone, tens of thousands of incarcerated people are in long-term solitary confinement, with devastating and lasting effects on cognitive and mental health. (See “Extreme Isolation” below.)
For most of human society, however, social isolation acts in more insidious ways than these “experiments” capture, often disproportionately affecting vulnerable members of the population, such as the elderly, and with effects accumulating slowly such that they may go unnoticed for many years, if not decades. The effects of this subtler sort of social isolation, which some health researchers and psychologists have already described as a public health risk, are better observed in longer-term studies that look for links between a person’s social connections and how the mind functions.
Many studies have found that chronic social isolation is indeed associated with cognitive decline, and that isolation often precedes decline by several years. One 2013 study, for example, measured cognitive function at two time points in a cohort of more than 6,000 older individuals taking part in the English Longitudinal Study of Ageing (ELSA). People who reported having fewer social contacts and activities at the beginning of the study, researchers found, showed greater decline in cognitive function, as measured by verbal fluency and memory recall tasks, after four years.
More-recent studies have added weight to the association. A 2019 study of more than 11,000 people taking part in ELSA found that men who reported higher-than-average social isolation and women who reported increasing social isolation both experienced above-average decline in memory function within two years of being surveyed. However, the results don’t demonstrate that isolation causes deterioration in brain function, cautions ELSA director Andrew Steptoe, a UCL psychologist and epidemiologist who collaborates with Fancourt; it’s also possible that cognitive decline encourages some people to socialize less.
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" The Dementia Guide can help anyone learn about dementia and the treatments, support and services available. "
https://www.dementiadaily.org.au/almost-3000-dementia-guides-distributed/
Almost 3,000 Dementia Guides distributed. The Dementia Guide, a useful resource for people impacted by dementia, was launched in February this year and already almost 3,000 people have requested or downloaded a copy. The Dementia Guide can help anyone learn about dementia and the treatments, support and services available and is relevant for any person impacted by any form of dementia, of any age.
The guide is available for free to download on our website or a hard copy can be posted on request. With the generous support of Lifeview, Dementia Australia has been able to print hard copies of the Guide and send them for free to individuals, and for a small fee for a carton for organisations. While restrictions have meant there hasn’t been an official launch, Dementia Australia CEO Maree McCabe was able to personally thank Lifeview CEO Madeline Gall before social distancing came into force.
This guide is for anyone who has been impacted by any form of dementia.
The information in this guide is divided into sections.
- Each section relates to a particular stage of your dementia journey.
- If you are living with dementia, The Dementia Guide will help you understand more about dementia and the treatments, support and services available. It includes information about living well with dementia and making plans for the future.
- If you are a family member or friend of a person with dementia, this guide will help you to understand more about dementia, the support and services available, and information about providing support in a carer role. You will find additional resources listed throughout this guide. There is also a checklist on page 127 to help you live well now and plan for the future.
- Keep this guide in an accessible place so you can refer to it when you need.
L-R Maree McCabe, CEO Dementia Australia and Madeline Gall, CEO Lifeview
To download your copy, or to request a hard copy version, please visit www.dementia.org.au/resources/the-dementia-guide.
Posted: June 17th, 2020
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New study reveals barriers to effective medication management for those living with dementia
Up to two thirds of people with dementia are prescribed potentially inappropriate medications, with a new study from Monash University exploring system challenges which may lead to this. The study investigated the obstacles and complexities in medication management for people living with dementia through qualitative research involving four key stakeholder groups: carers, general practitioners, nurses and pharmacists.
Led by Monash University’s Centre for Medicine Use and Safety (CMUS), the study set out to identify the primary factors hindering effective medication management for those living with dementia. The foremost barriers are: poor communication and relationships between stakeholders; infrequent medication reviews and a lack of practitioner training, evidence and guidelines to navigate prescribing and deprescribing decisions.
CMUS researchers recruited focus group participants from a wide range of communities and healthcare settings, including those in carer roles who are carrying the majority of the burden and often experiencing high levels of stress, perpetuated by complicated healthcare systems and medication regimen complexity.
https://www.monash.edu/pharm/about/news/news-listing/2020/new-study-reveals-barriers-to-effective-medication-management-for-those-living-with-dementia
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An AI ecosystem to set benchmark for disease diagnosis
Professor Michael Barnett, together with the Sydney Neuroimaging Analysis Centre (SNAC) will lead a project awarded $4.02 million to investigate how AI can be paired with medical imaging technologies to set a new standard for the diagnosis, monitoring and treatment of neurological disease.
The Translating AI Networks to Support Clinical Excellence in Neuro Diseases (TRANSCEND) project will build a new, hybrid AI learning ecosystem by training it to recognise biomarkers linked to disease progression of the common, disabling neurological condition, multiple sclerosis.
AI medical research projects receive $7.1 million funding
8 July 2020
Translating technology into healthcare
https://www.sydney.edu.au/news-opinion/news/2020/07/08/ai-medical-research-projects-receive--7-1-million-funding.html
The University of Sydney has been awarded more than $7 million federal funding for research projects harnessing AI to diagnose and treat neurological and mental health disorders.
Psychologists, mathematicians and data scientists at the University of Sydney are teaming up to investigate how artificial intelligence (AI) and machine learning technologies can guide effective support and treatment for people with neurological disease and mental health disorders.
The two multidisciplinary projects received more than $7 million federal funding to focus on using AI to develop technology to support youth mental health care and to build an extensive AI network for more accurate diagnosis of neurological disorders such as multiple sclerosis.
Both projects are led by the University of Sydney’s Brain and Mind Centre.
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Caring for someone with dementia:
01 Communication
02 Therapies and communication approaches
03 Safety issues
04 Caring for someone who lives alone
05 Activities
06 Making the most of respite care
07 Driving
08 Travelling
09 Working with doctors
10 Going to hospital
11 Pain
12 Eating
13 Nutrition
14 Dental care
15 Dressing
16 Sleeping
17 Hygiene
18 Continence
19 Intimacy and sexual issues
20 Later stages of dementia
21 Palliative care
==================================================================================
Two copies of the APOE4 variant, which confers a higher risk of dementia, doubles the risk of severe symptoms as a result of infection with SARS-CoV-2, according to a study. Jef Akst May 26, 2020
https://www.the-scientist.com/news-opinion/alzheimers-gene-linked-to-higher-risk-of-severe-covid-19-67570
The APOE ε4 gene variant that puts people at a greater risk of developing Alzheimer’s disease also has a link to COVID-19. According to a study published today (May 26) in The Journals of Gerontology, Series A, carrying two copies of the variant, often called APOE4, makes people twice as likely to develop a severe form of the disease, which is caused by the SARS-CoV-2 coronavirus currently spreading around the world.
David Melzer of Exeter University and colleagues used genetic and health data on volunteers in the UK Biobank to look at the role of the APOE4 variant, which affects cholesterol transport and inflammation. Of some 383,000 people of European descent included in the study, more than 9,000 carried two copies. The researchers cross-referenced this list with people who tested positive for COVID-19 between March 16 and April 26—the assumption being that most such cases were severe because testing at the time was largely limited to hospital settings. The analysis suggested that the APOE4 homozygous genotype was linked to a doubled risk of severe disease, compared with people who had two copies of another variant called ε3.
The result isn’t due to nursing home settings or to a greater likelihood of having a diagnosis of dementia, which none of the 37 people with two copies of APOE4 who tested positive for COVID-19 had. “It is pretty bulletproof—whatever associated disease we remove, the association is still there,” Melzer tells The Guardian. “So it looks as if it is the gene variant that is doing it.”
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The New Changes to the approved provider process mean existing residential aged care or flexible care providers can now opt-in to deliver home care without having to submit a new application. This means more Choice for YOU:
- increased competition from new players including residential care, retirement living operators, Commonwealth Home Services Programme (CHSP) providers, private home care providers and brokerage agencies (these brokered agencies will be the biggest challenge for approved providers because they already have the systems and processes in place to provide services; they already have staff and in a lot of cases they have quite strong relationships with the clients, stronger than the approved provider)
- competition will also come from retirement village operators looking to provide services to their residents and from large GP practices
- allied health businesses were also expressing an interest in becoming approved home care providers, especially in the context of an increased focus on wellness and reablement
- strong competition would come from labour hire companies that currently supply staff to aged care
- home care franchise groups and residential care providers who are looking to deliver community care
- Increase in marketing to consumers and business tactics used by providers to ‘win’ customers.
- new information fields for home care providers to detail their services
- ability for assessors to issue referrals after finalising an assessment along with new mandatory fields for assessors recommending home care
- additional fields in the service finder and enhanced sort and filter options in all portals
- changes to service referrals for providers.
Those who are over 65 years of age contact the My Aged Care line on 1800 200 422 for assistance with all their needs. This has the added advantage that you do not need to Repeat, Repeat yourself at each phone call :-)
- Levels 1, 2, 3 and 4 (click here for an explanation of the Levels)
- plus information on
- Part or full day respite in day care centres in their area/preferred location
- In-home respite services, including overnight care and personal care services
- Overnight community cottage respite
- Activity programs in the community
- Respite for carers of people with dementia and challenging behaviours.
Emergency Respite 1800 059 059
- for 63 days each financial year, with the possibility of extensions of 21 days at a time if an ACAT considers this necessary.
How much does it cost?
Costs for respite care may vary depending on your circumstances and the kind of help you need. The Australian Government subsidises a range of aged care services in Australia. If your circumstances allow, it is expected you’ll contribute to the cost of your care if you can afford to do so. If your respite involves in-home respite, day respite, or overnight or weekend respite, costs can vary depending on the type of service – from an hourly rate for in-home respite to a sessional fee for a morning or afternoon in a day care centre. Any fees and eligibility for subsidy will be discussed and agreed upon with your service provider before you receive the relevant services. If you receive respite care in an aged care home, different fees will apply.
If your loved one is to receive residential respite care through an aged care home, you will only have to pay the Basic Daily Fee and perhaps a booking fee. The booking fee is a prepayment of respite care fees and not an extra payment. The booking fee cannot be more than either a full week's basic daily fee or 25% of the fee for the entire stay, depending on which amount is the lowest.
Schedule of Fees and Charges for Residential and Home Care: From 20 September 2021
This page provides the latest updates to aged care fees and charges.
[i] Residents in designated remote areas may be asked to pay an additional $1.06 per day.
[ii] This rate applies to residents who enter residential care within this time period but not to those who were already in care prior to this time period. The Maximum Permissible Interest Rate applicable for the calculation of a resident’s daily payments is fixed either at their date of entry to care (for a low means resident) or the date they agree to a room price (for a resident who is not eligible for government assistance with their accommodation costs).
and do remember that the daily care fee IS negiotable.
What you will pay is discussed and agreed upon between you and the organisation that delivers your respite services. The rate is set Before you receive the relevant services. If it is an Emergency, this assessment will be brief. Once the emergency has passed, the organisation that provides your respite will most likely talk to you about your needs and the type of help you might need in the future.
Financial hardship assistance for Home Care and Residential Respite Care You will need to complete Form SA462 if you are seeking financial hardship assistance with your fees and charges in Home Care, or the basic daily fee in Residential Respite Care.
10 February 2020
Tips for those Carers who are looking after a loved one with Dementia: http://www.dementiaresearch.org.au/images/2077_DCRC_respite_guide_6web.pdf
- Flexible respite considers the needs of the person with dementia as central, alongside the needs of the carer. This brochure explores the different types of respite services that are available, why they are important to both the person living with dementia and their carers, and provides tips on how to make the most out of respite services.
Download or read Flexible respite for people with dementia and their carers - Information for consumers - and ask these questions too, when you are trying to choose Centre-based Respite for your loved one
- and some questions to ask when you are considering Residential Respite
- OR a short-term stay in a nursing home - for Respite vacancies NOW, to have a break from the normal routine :-) A sort of 'try-before-you-buy' option! After all, this will possibly be "Their Home" now. Suggestion: Let them dip their toe in the water and try respite care for awhile. Let's them suss out the place without having to commit to a long-term permanent placement.
Caring is just something that women do. It is a part and parcel of your life. Those who take on the much more demanding role when a loved one suffers an illness have been found to have the worst health of anyone. Consider Respite as Your Holiday, just for a few hours to have that uninterrupted cup of coffee, or chat with friends, or just sit alone and allow yourself to "Just Be".
Help sheets for you to download:
Coronavirus (COVID-19) - Tips for Carers, Families and Friends of People Living with Dementia
Coronavirus (COVID-19) - Tips for residential care providers
Coronavirus (COVID-19) - Tips for home care providers
Coronavirus (COVID-19) - Tips for People Living with Dementia
https://www.dementia.org.au/resources/coronavirus-covid-19-helpsheets/tips-for-people-living-with-dementia
Carers - who are separated from their care receivers due to cornonavirus, you can use 63 respite days without your payments stopping. If you run out of respite days, you can call the carers line on 132 717.
Find out all the info here: https://www.servicesaustralia.gov.au/individuals/subjects/affected-coronavirus-covid-19/if-you-already-get-payment-from-us-coronavirus-covid-19/carers-coronavirus-covid-19
06 April 2020
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Older Aussies get dedicated pandemic support line
By: Dallas Bastian in News, Top Stories April 23, 2020
Senior Australians, their families and carers who seek help or advice about navigating the coronavirus pandemic now have access to a dedicated free call support line. The support line will operate Monday to Friday, except public holidays, from 8.30am to 6pm. It can be reached on 1800 171 866.
The phone line was set up by the government in conjunction with COTA Australia, National Seniors Australia, the Older Persons Advocacy Network and Dementia Australia.
Minister for Aged Care and Senior Australians Richard Colbeck urged Australians to make use of support if they are feeling lonely, distressed, troubled or confused. OPAN chief executive Craig Gear said the hotline will provide particular support to those accessing aged care services who are disproportionately impacted by health precautions and restrictions. “People are scared and confused,” Gear said. “Many are unsure what is safe and what isn’t. The hotline is an important part of what will need to be a big community response. We need everyone checking in and supporting older people in aged care in particular because they are vulnerable to both the virus and social isolation.”
Having difficulty getting answers from your loved one's Provider/ Nursing Home? - Ring the Older Persons Advocacy - 1800 700 600.
For help if your loved one has Dementia - do ring Dementia Australia on 1800 100 500.
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Video calls during social isolation may make no difference to the quality of life of older people, a review of scientific studies suggests.
The evidence from these three studies suggests that video calls have little to no effect on loneliness after three, six or 12 months. There is also little to no difference in symptoms of depression after three or six months, although after a year, older people who used video calls may have had a small reduction in depression compared to those who received usual care. Similarly, video calls may make little to no difference to older people’s quality of life.
A Cochrane Rapid Review, Video calls for reducing social isolation and loneliness in older people, will come as small comfort to many after mobile technology was widely touted as a way of countering loneliness in older people forced in to isolation during COVID-19 restrictions.
The authors of the review looked at three studies involving more than 200 participants aged 65 and over who used internet video calls on computers tablets or smartphones.
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Dementia Behaviour Management Advisory Service (DBMAS)
https://dementia.com.au/
DBMAS is a support service for people with dementia who are experiencing changes in behaviour that impact their care or the carer.
The service supports staff and carers in community, residential aged care, acute and primary care settings with expertise, advice and short-term case management interventions.
Support is provided through:
- 24/7 contact with a Dementia Consultant on 1800 699 799 for advice or to make a referral.
- Phone or in person assessment and support of the person living with dementia and their environment
- Communication with the carer/support network to gain knowledge of them as a person.
- Advice, strategies and written recommendations tailored specifically to the individual, including those from diverse communities and life experiences.
- On-going support and guidance to implement the recommendations and adaptations to those recommendations.
- Increased staff knowledge through modelling of the strategies and recommendations.
- Access to current research and guidelines
- Referrals to other DSA services
Who is Eligible?
Our clients are people living with dementia, care workers, health professionals and family carers who are supporting a person with dementia experiencing behaviours and psychological changes that are impacting their care.
To receive DSA services the person requiring support must have:
- A diagnosis of dementia, or suspected of having dementia
- Experiencing behaviours that are impacting their care or the way care is provided as a result of their dementia
- Consent from the person with dementia or their nominated person responsible for their care
Join Dementia Australia Facebook support group
Dementia Australia Facebook Dementia Support Group is a thriving online community of more than 8,000 like minded people. It is a place where family carers come together and share their experiences as well as provide comfort, solace and sometimes light-hearted relief for each other.
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Scientists make breakthrough in understanding how blood pressure affects the brain
By: Conor Burke February 10, 2020
Scientists have made a breakthrough in understanding the way brain blood flow affects certain serious illnesses such as high blood pressure, migraines and even dementia.
The academics from the University of Auckland, University College London, and Bristol University, have discovered that the brain has its own blood pressure sensors that monitor and regulate its own blood flow, separate from the body-wide blood pressure control system.
The brain needs more blood than any other organ and disturbances to brain blood flow are a known cause in many diseases. For example, sustained reduction in brain blood flow is said to be a likely cause of cognitive decline, dementia, and neurodegenerative disease such as Alzheimer’s Disease.
https://www.agedcareinsite.com.au/2020/02/scientists-make-breakthrough-in-understanding-how-blood-pressure-affects-the-brain/
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Could walking gait speed or other gait characteristics decline be an indication of dementia?
Gait Characteristics and Cognitive Decline: A Longitudinal Population-Based Study
Issue title: Gait Disorders in Alzheimer’s Disease and Other Dementias
Journal: Journal of Alzheimer's Disease, vol. 71, no. s1, pp. S5-S14, 2019
Accepted 1 March 2019 Published: 19 September 2019
Gait impairments are emerging predictors of dementia. However, few studies have examined whether gait predicts decline in specific cognitive domains. To determine whether gait speed or other gait characteristics were associated with decline in specific cognitive domains and the role of the ApoE4 genotype in modifying these associations.
Participants (n = 410; mean age 72.0±7.0 years) were randomly selected from the electoral roll. At baseline, gait speed was assessed using the GAITRite walkway. Gait variability in step time, step length, step width, and double support time (DST) was calculated as the standard deviation of each measure across all steps. In a subsample (n = 177), speed was measured under fast pace. The difference between usual and fast pace was calculated. At baseline, 2.6 and 4.6 years processing speed, memory, executive and visuospatial function were measured using neuropsychological tests. Multivariable mixed models were used to examine 1) associations between gait and the different cognitive domains over time and 2) whether the presence of ApoE4 genotype modified these associations.
Higher DST variability was associated with greater decline in memory (p for interaction 0.03). Slow gait speed predicted decline in processing speed (p = 0.02) and visuospatial function (p = 0.03). In ApoE4 carriers, gait speed also predicted decline in memory (p = 0.02). Other gait characteristics did not predict decline in any of the cognitive domains (p > 0.05).
Gait is multifaceted with correlations between individual gait measures, but different gait characteristics may not necessarily behave uniformly and may be controlled by different brain constructs. Therefore, using factor analysis could be problematic if gait characteristics vary in their sensitivity to cognitive decline.
These findings add to the evidence that gait is an early indicator of cognitive decline, but that specific gait measures may provide diagnostic insights into specific cognitive domains.
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Lewy body disease, a form of degenerative dementia, has proven extremely difficult to accurately diagnose. This is due to its similarities to other diseases and the impossibility of finding Lewy bodies through brain scans and other diagnosis methods.
New report reveals two thirds of people think dementia is a normal part of ageing, rather than a medical condition
https://www.dementia.org.au/media-releases/2019/new-report-reveals-two-thirds-of-people-think-dementia-is-a-normal-part-of-ageing-rather-than-a-medical-condition
A new global survey of almost 70,000 respondents across 155 countries – including Australia – has revealed a startling lack of knowledge around dementia, with two thirds of people thinking the disease is a normal part of ageing. The survey, commissioned by Alzheimer’s Disease International, of which Dementia Australia is a member, also found that a staggering 95 per cent of respondents think they will develop dementia in their lifetime.
The World Alzheimer Report 2019: Attitudes to dementia, is being released today ahead of World Alzheimer’s Day on Saturday 21 September. The report reveals the results of the world’s largest survey ever undertaken into attitudes to dementia.
Nobody wants to be told they have dementia, but if the person you love refuses to accept their diagnosis, don’t despair. There’s plenty you can do to help them come to terms with it and get the help they – and you – might need.
The tests have been done and the diagnosis is official, but your loved one may still refuse to discuss it or believe it – even if they’ve spent months or years experiencing symptoms. Dementia denial can be a particularly frustrating obstacle for family and friends, especially if they’re trying to sort out practical ways to keep the person they love safe. But it’s also very understandable…
Dementia Screening Test. Watch the video...
Put yourself in their shoes
https://www.ideas.org.au/blog/dementia-dawns-story.html
'Dawn' was convinced there were people coming to steal her belongings, so after dinner when her husband Bill* was settled in the lounge room dozing in front of the television, she made her move. Life as it IS.
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The widely expected move comes months after the companies scrapped trials of another Alzheimer’s drug.
16 September, 2019 EMILY MAKOWSKI
On Friday (September 13), biotechnology firm Biogen and its partner Eisai announced plans to abandon two clinical trials for an Alzheimer’s treatment using the drug elenbecestat. The decision to end the studies came after a data safety monitoring board found that the benefits of administering elenbecestat did not outweigh the risks, reports Reuters. In March, the companies ended two late-stage trials of another Alzheimer’s drug, aducanumab. Elenbecestat and aducanumab were both β-site amyloid precursor protein-cleaving enzyme (BACE) inhibitors, drugs that curtail the production of the main component of the amyloid plaques found in Alzheimer’s patients.
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02 August 2019
A new artificial intelligence (AI) model created by MIT Media Lab researchers can help in predicting which patients at risk for Alzheimer’s disease will experience significant cognitive decline. By predicting these patients’ cognition test scores up to two years in the future, this machine learning platform could be used to improve the Alzheimer’s drug research and development process. These researchers will be presenting their findings next week at the Machine Learning for Health Care conference.
Shortcomings in Current Alzheimer’s Research The selection of potential drugs and participants for clinical research regarding Alzheimer’s treatment has been an expensive, unsuccessful process thus far. Major pharmaceutical companies have spent hundreds of billions in researching the disease over the past 20 years, but these efforts have experienced many failures.
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https://www.agedcareinsite.com.au/2019/07/exciting-new-research-finds-healthy-lifestyle-reduces-dementia-risk-regardless-of-genetics/
15 July 2019
New “exciting” research coming out of the UK has found that a healthy lifestyle, which includes physical activity and low alcohol consumption, can significantly lower the risk of dementia, regardless of a genetic predisposition to the disease. The University of Exeter-led research looked at data from 196,383 adults of European ancestry aged 60 and older from UK Biobank, and found that the risk of dementia was 32 per cent lower in people with a high genetic risk if they had followed a healthy lifestyle.
“This is the first study to analyse the extent to which you may offset your genetic risk of dementia by living a healthy lifestyle. Our findings are exciting as they show that we can take action to try to offset our genetic risk for dementia. Sticking to a healthy lifestyle was associated with a reduced risk of dementia, regardless of the genetic risk,” said joint lead author Dr Elżbieta Kuźma.
The study found that living a healthy lifestyle concurred with lower risk of dementia across all genetic risk groups. Joint lead author Dr David Llewellyn, from the University of Exeter Medical School and the Alan Turing Institute, said: “This research delivers a really important message that undermines a fatalistic view of dementia. Some people believe it’s inevitable they’ll develop dementia because of their genetics. However, it appears that you may be able to substantially reduce your dementia risk by living a healthy lifestyle.”
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Neurodegenerative diseases associated with old age such as Alzheimer's disease present major problems for society, and they currently have no cure. The telomere protective caps at the ends of chromosomes shorten with age, and when they become critically short, they can induce a persistent DNA damage response at chromosome ends, triggering secondary cellular responses such as cell death and cellular senescence.
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9th July 2019
The eyes have it:
https://www.dementiadaily.org.au/the-eyes-have-it-diagnosing-alzheimers-disease-with-an-eye-test-before-symptoms-appear/
Diagnosing Alzheimer’s disease with an eye test, before symptoms appear -A research project being conducted in Melbourne is entering the trial phase of a non-invasive, cost-effective eye test to detect early signs of Alzheimer’s disease. The project has received $600,000 in funding from a major coalition of American philanthropists known as the Alzheimer’s Drug Discovery Foundation, which includes the likes of Bill Gates and MacKenzie Bezos.
Researchers from the Centre for Eye Research Australia (CERA) will fast track the development of the test and start clinical trials in August. The world-first eye scan trial will use coloured light to look through the retina for abnormal proteins that build up in the brain. The technology is similar to that used in NASA satellites.
The camera technology developed by Associate Professor Peter van Wijngaarden and Dr Xavier Hadoux, from CERA and the University of Melbourne, will measure the amyloid beta in the retina many years before symptoms of the disease appear.
Associate Professor van Wijngaarden said the approach had the potential to revolutionise the diagnosis of Alzheimer’s disease.
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Specialist Dementia Care Program: Overview -
The Specialist Dementia Care Program (SDCP) is a new Australian Government initiative. The program will provide a person-centred, multidisciplinary approach to care for people exhibiting very severe behavioural and psychological symptoms of dementia, who are unable to be appropriately cared for by mainstream aged care services. The program will offer specialised, transitional residential support, focusing on reducing or stabilizing symptoms over time, with the aim of enabling people to move to less intensive care settings.
The SDCP will provide care for people exhibiting very severe behavioural and psychological symptoms of dementia (which may also be referred to as responsive behaviours associated with dementia), who are unable to be appropriately cared for by mainstream aged care services. It is estimated that up to 1 per cent of all people living with dementia would be in the target group. A nationally consistent assessment methodology will be used to ensure the program benefits those most in need.
Key features of the SDCPThe SDCP provides a new approach to care and will be rolled out in two phases. The department will work with key stakeholders to evaluate and refine the model to ensure the model provides optimal care for people exhibiting very severe behavioural and psychological symptoms of dementia.
The SDCP will provide intensive, specialised care in a dementia friendly environment, generally a dedicated unit within a broader residential aged care service. The SDCP will provide transitional support with the aim of enabling people to move to less intensive care settings. Specialist clinical support will be a key feature of the model. The SDCP will complement state and territory government services and supports for people with very severe behavioural and psychological symptoms of dementia.
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New form of dementia discovered, redefining mainstream Alzheimer’s science
MEDICAL Rich Haridy May 1st, 2019
https://newatlas.com/new-dementia-disease-late-alzheimers/59491/
Dubbed by one scientist as, "probably the most important paper to be published in the field of dementia in the last five years," a team of researchers has described a newly defined neurodegenerative disease that closely mimics the symptoms of Alzheimer's, but which has an entirely different pathological cause.
…those of us who work in dementia have long been puzzled by our patients who have all the symptoms of Alzheimer's disease, but whose brains do not
contain the pathological features of the condition," says University College London's Robert Howard, who did not work on this new study. "We have also been puzzled by a group of often very old patients whose dementia does not progress as rapidly as we would expect with Alzheimer's disease. We now know that these puzzling patients are probably suffering from LATE and not Alzheimer's disease and that LATE may be "mimicking" Alzheimer's in about 20 percent of cases."
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“Mental health, in particular positive psychological factors such as having a purpose in life, is emerging as a very potent determinant of health outcomes,” said Patricia Boyle, PhD, Associate Professor of Behavioral Sciences at the Rush Alzheimer’s Disease Center of Rush University Medical Center in Chicago. “Clinicians need to be aware of patients’ mental state and encourage behaviors that will increase purpose and other positive emotional states.”
https://www.mdedge.com/neurology/article/99269/stroke/sense-purpose-may-reduce-risk-cerebral-infarcts
Australian Government Programs to Support People Living with Dementia, and Their Support Networks
Page last updated: 15 February 2019
National Dementia Support Program
Younger Onset Dementia Key Worker Program
Dementia Education and Training for Carers
Dementia Behaviour Management Advisory Services
Severe Behaviour Response Teams
Dementia Training Program
Interventions to Support Carers of People with Dementia
This review was released on 18 October 2018 and considers what works to support carers of older people with dementia to prevent or delay entry into residential aged care. Download the review: Interventions to Support Carers of People with Dementia (PDF - 1059 Kb)
National Dementia Support Program (NDSP)
Under the NDSP, the Australian Government funds education programs, services and resources that aim to improve awareness and understanding about dementia and increase the skills and confidence of people living with dementia, their carers, families, health professionals, volunteers and community contacts. Services provided under the NDSP include:
- National website https://www.dementia.org.au
- National Dementia Helpline and Referral Service 1800 100 500*
- One-to-one and small group counselling, access to support groups and information, and recommendations and referrals
- Early intervention programs, for example the Living With Dementia program
- Non-accredited training for professionals, carer education and training, and community education seminars
- Public awareness raising, recognition and understanding of dementia.
* Free local call, calls from mobile and pay phones may incur extra charges. For people who do not speak English, the Translating and Interpreting Service (131 450) will provide translation and interpretation services for calls to the National Dementia Helpline.
The NDSP is funded under the Dementia and Aged Care Services fund.
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Queensland-Wide Telephone Support Group
This group is hosted by Alzheimer’s Queensland last Wednesday of every month. The group is held from 1:00pm to 2:00pm. Alzheimer’s Queensland organizes telephone link up at no cost to members. Carer Support Groups provide information and support for those caring for a friend or family member with dementia. Please ring 1800 639 331 or email [email protected] for more information, to register or to be placed/removed from the mailing list.
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Talking informally with other Carers Does Help!
Angels Carer Support Group. Held the last Tuesday of each month at St. Paul's Anglican Church Hall, 69 Palm Beach Ave, PALM BEACH
Come just after 1.00pm for that cuppa and a chat. Often we have Speakers on subjects of interest to us as Carers - they start about 1.15pm and go to about 3.00pm. Other times we just sit, relax and enjoy each other's company and support each other as we face the daily caregiving tasks. Sit and chat, and take a brief break - for YOU :-) Father Phillip is a Great Supporter of the Angels.
YOU are most welcome to join us :-) Do take CARE of YOU too...
and to find out what else is going on in the Palm Beach area: http://palmbeachgoldcoast.net.au/events/
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Legal rights
A practical guide to help people diagnosed with dementia, and their families and carers, better understand the legal issues they may be faced with.
Read or download Dementia and your legal rights
- in Queensland - Advance Care Directive
https://end-of-life.qut.edu.au/advance-directives/state-and-territory-laws/queensland#547671
Superannuation and dementia
People with dementia and their families often ask whether they have a right to access their superannuation early to assist with their financial situation, given that they have a terminal illness.
Read or download Superannuation and dementia
Dementia Screening Test. Watch the video...
and the Standardized Mini-Mental (SMMSE)
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The protein expression data, which are freely available online, could help identify new drug targets for the disease.
https://www.the-scientist.com/news-opinion/new-map-shows-brain-changes-associated-with-alzheimers--65428
Feb 04, 2019
Researchers in the UK and New Zealand have created the largest-ever database of protein expression changes associated with Alzheimer’s disease, according to a study published today (February 4) in Communications Biology. The data, which are freely available to researchers online, reveal new insights into the brain areas affected by Alzheimer’s, as well as the molecular pathways leading to the disease.
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FDA Cracks Down on “Bad Actors” in Dietary Supplement Market
The agency sends warning letters to makers of products that claim to prevent or treat Alzheimer’s and other diseases, and announces changes to its enforcement practices.
https://www.the-scientist.com/news-opinion/fda-cracks-down-on-bad-actors-in-dietary-supplement-market-65460
12 February 2019
The number of people living with dementia around the world has more than doubled to almost 44 million since 1990, according to a global study.
The figure, which the report says is mainly a reflection of the growth and ageing of the world’s population, is estimated to reach around 100 million by 2050.
25 January 2019
Dementia Australia has welcomed the rollout of an additional 10,000 new high-level home care packages, which commenced in January 2019 and will support more senior Australians, including those with dementia, to remain living independently in their own homes.
Dementia Australia CEO Maree McCabe said as the prevalence of dementia continues to increase so does the need for high-level home care packages.
“Currently, around 70 per cent of the more than 436,000 Australians with dementia live in the community. An increase of home care packages will help more Australians to live at home for as long as possible, in a supported way. This will make a substantial difference not only to their lives, but also to those of their families and carers, as well as the broader community,” Ms McCabe said.
These additional home care packages will provide funding for up to $50,000 of care services per person per year, which may include
- home assistance,
- nursing,
- transportation,
- and meal preparation.
To contact Dementia Australia, call the National Dementia Helpline on 1800 100 500 or go to www.dementia.org.au
and that All Important: EATING
Many people living with dementia who don’t eat, or reject food (or drink, but that’s a whole other article!) offered to them, will eat it readily with just the right assistance. Of course, there are times when our inputs may not work, or when dementia has progressed to such an extent that eating becomes physically nigh on impossible, but I believe we must never assume that ‘not eating’ necessarily means ‘not hungry’.
And what is even more worrying, is that ‘behaviour’ like calling out or becoming angry or aggressive at the table might then be dealt with in ways that make things worse – including with medication that impacts alertness or concentration, so further reduces interest in food or ability to eat safely and exacerbates the problem!
For people living with dementia, staying well-nourished and hydrated can involve all sorts of challenges.
- One contributor to those can be the gradual loss of the connections in the brain linking hunger to eating and thirst to drinking.
- There may be reduced ability to recognise food and drinks or to identify and recall how to use cutlery and the array of items in a kitchen or on a dining table.
- Alterations in taste and smell and impaired ability to clearly make food preferences and desires known, add to the picture.
Specialist Dementia Care Program
The Specialist Dementia Care Program (SDCP) is a new Australian Government initiative. The program will provide a person-centred, multidisciplinary approach to care for people exhibiting very severe behavioural and psychological symptoms of dementia, who are unable to be appropriately cared for by mainstream aged care services. The program will offer specialised, transitional residential support, focussing on reducing or stabilising symptoms over time, with the aim of enabling people to move to less intensive care settings.
06 December 2018
Target Group:
The SDCP will provide care for people exhibiting very severe behavioural and psychological symptoms of dementia (which may also be referred to as responsive behaviours associated with dementia), who are unable to be appropriately cared for by mainstream aged care services. It is estimated that up to 1 per cent of all people living with dementia would be in the target group. A nationally consistent assessment methodology will be used for all assessments to ensure the program benefits those most in need.
Key Features:
The SDCP provides a new approach to care and will be rolled out in two phases. The department will work with key stakeholders to evaluate and refine the model as it rolls out nationally, to ensure the model provides optimal care for people exhibiting very severe behavioural and psychological symptoms of dementia.
The SDCP will provide intensive, specialised care in a dementia friendly environment, generally a dedicated unit within a broader residential aged care service. The SDCP will provide transitional support with the aim of enabling people to move to less intensive care settings. Specialist clinical support will be a key feature of the model. The SDCP will complement state and territory government services and supports for people with very severe behavioural and psychological symptoms of dementia.
At full rollout in 2022-23 it is expected that there will be at least one specialist dementia care unit (within a broader residential aged care service) operating in each of the 31 Primary Health Networks.
06 December 2018
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In Queensland, there were an estimated 77,633 people with dementia in 2017, which is estimated to increase to 105,170 in 2025 and 233,298 by 2056, which is estimated to cost Queensland $2.69 billion in 2017, which is expected to soar to $3.58 in eight years, by 2025, and to $7.6 by 2056.
Dementia Daily - March 2017.
September was Dementia Awareness Month and the Department of Human Services has been working closely with Dementia Australia to share information to help families start a conversation about dementia.
Have a look at these questions on social media and filmed a panel Q&A with Dementia Australia’s Dr Kaele Stokes and Financial Information Service officer, Justin Bott.
- The panel discussion touches on issues including
- pension rates,
- downsizing,
- younger onset dementia and
- where to go for more information and support.
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Videos re Dementia and Diabetes
Supporting Someone with Dementia and Diabetes
Living with Dementia and Diabetes
Dementia and Stroke or Coronary Heart Disease
This toolkit relates to three chronic conditions, dementia, stroke and coronary heart disease.
A combination of dementia and stroke or coronary heart disease can result in a unique set of challenges for people living with these conditions and their carers. All three conditions have similar risk factors meaning it is not uncommon for a person to be living with more than one of these.
Videos re Dementia and Chronic Heart Conditions or Stroke
How to support them
Living with Dementia and Chronic Heart Conditions or Stroke
For more information visit http://www.dementia.org.au/
===============================Medicines and dementia: what you need to know
Medicines do not have to be part of your care plan for dementia, and if they are, they do not have to play a large role in your life.
NPS MedicineWise and Alzheimer’s Australia have prepared downloadable materials to help you ask questions and talk with people close to you and the health professionals involved in your care about how you would like to be supported.
The main resource is an information booklet, designed to help you:
- plan a conversation about dementia with the people you choose, for example, your family and friends and health professionals involved in your care (eg, GPs, pharmacists, specialists, nurses)
- find out about advanced care planning
- find out what support is available to manage your symptoms
- find information on what treatment options may be best for you
- record details about symptoms, medicines, values and wishes when it comes to your care
- find out about support services available to help you and those closest to you
Dementia Q&A:
01 Drug treatments for Alzheimer's disease - Cholinesterase inhibitors
02 PBS subsidies for cholinesterase inhibitors what are the conditions?
03 Drug treatments for Alzheimer’s disease - Memantine
04 Drugs used to relieve behavioural and psychological symptoms of dementia
05 Risperidone for treatment of behavioural symptoms in dementia
06 Mental exercise and dementia
07 What you eat and drink and your brain
08 Physical exercise and dementia
09 Safer walking for people with dementia approaches and technologies
10 Tests used in diagnosing dementia
11 Diagnostic criteria for dementia
12 Genetics of dementia
13 Mild Cognitive Impairment (MCI)
14 Vascular Cognitive Impairment
15 Depression and dementia
16 Pain and dementia
17 Brain donation
18 Rights to health information
19 Aluminium and Alzheimer's disease
20 Anaesthesia for older people and people with dementia
21 Delirium and dementia
22 Preventing financial abuse of people with dementia
23 Souvenaid
24 Anticholinergic drugs
25 Benzodiazepines
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Alzheimer’s researchers have proposed a radical change in the way the disease is defined, focusing on biological changes in the body rather than clinical symptoms such as memory loss and cognitive decline. The new research framework, released on Tuesday by the Alzheimer’s Association and the National Institute on Aging, is meant to provide scientists with a common language for describing the disease in research studies based on measurable changes in the brain that set Alzheimer’s apart from other causes of dementia.
“Much of the general public views the terms dementia and Alzheimer’s disease as interchangeable, but they are not,” said Dr Clifford Jack of the Mayo Clinic in Rochester, Minnesota, who helped craft the guidelines. The proposed changes follow guidance announced earlier this year by the US Food and Drug Administration and the European Medicines Agency to encourage the testing of new Alzheimer’s medicines based on biomarkers, rather than on clinical symptoms.
The moves would allow companies to test drugs in people before symptoms appear, offering a better chance of intervening before the disease has destroyed too many brain cells. Under the proposed research framework, Alzheimer’s would be characterised by three factors: evidence of two abnormal proteins associated with Alzheimer’s – beta amyloid and tau – and evidence of neurodegeneration or nerve cell death, all of which can be seen through brain imaging or tests of cerebral spinal fluid. It also incorporates measures of severity using biomarkers and a grading system for cognitive impairment.
13 April 2018
Blood test offers hope for for Alzheimer's
AAP in News, February 1, 2018
Scientists are closer to rolling out a revolutionary blood test for Alzheimer’s after discovering a new way of detecting one of the earliest signs of the brain disease. For decades scientists worldwide have tried to develop blood tests to predict Alzheimer’s in the hope of replacing the expensive and often invasive brain scans and lumbar punctures currently used to diagnose the most common form of dementia.
A team of Australian and Japanese scientists now claim they have the most accurate test yet for the earliest indicator of Alzheimer’s – a build-up of an abnormal protein in the brain known as beta-amyloid.
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March 2018
ICBII UPDATE ON THE ROAD TO THE CURE
THE FDA SEEMS TO BE LOOSENING RESTRICTIONS ON APPROVING DRUGS FOR ALZHEIMER’S DISEASE Could Parkinson’s Be Next?
With the population living longer, neurodegenerative diseases such as Alzheimer’s (AD) and Parkinson’s (PD) diseases have become an increasing economic threat to the welfare of the world community, not to speak of the emotional toll it has taken on the patients and loved ones. According to some estimates, Alzheimer’s has more than 55 million individuals afflicted with the disease. US alone has 5.1 million Alzheimer’s patients, which does not take account for the millions that are yet to be diagnosed and those that are misdiagnosed. AD is the sixth leading cause of death in the United States. It is the fifth-leading cause of death among those ages 65 and older and a leading cause of disability and poor health. With no cure on the horizon, the FDA has begun to rethink its strategy for the approval of new drugs for treating early stage (stage 1) Alzheimer’s disease. The following paragraph from the FDA is being distributed for comments purposes only, not for implementation.
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Big pharma calls it quits on Alzheimer's and Parkinson’s research
Criticisms are flowing from national and international peak bodies as they come to terms with the recent announcement by one of the world’s leading drug makers, Pfizer, to end their research into discovering new medications for Alzheimer's and Parkinson’s. January 2018
Dementia Australia voice concerns
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An Absolute Must Read. From one who Actually Has Dementia...
Time To Tell The Truth About Dementia….From Someone Living With Dementia
By Norrms McNamara. Jan 22, 2018
Things YOU always wanted to know, or SHOULD know about dementia, but THEY were too AFRAID to TELL YOU, and I am sure many others were horrified around the world to learn that THIS information is not being given out, this is “MY ANSWER TO THEM”.
These are just 15 points of what you MAY come to expect after a diagnosis of dementia, WHY don’t they tell you this? and WHY has it taken so long to be told this? especially by a person who is LIVING with this disease ?? I have NO IDEA !!
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Sleep Habits
The first step toward better sleep is better “sleep hygiene” – daily habits that train your body for sleep.
'How' you sleep matters
https://www.stuff.co.nz/life-style/well-good/teach-me/91598733/What-your-sleeping-position-says-about-you
The science of sleep has begun to show clear links between lack of sleep and a raft of different ailments - including Alzheimer's disease. "There really is not a single tissue or organ of the body or process of the mind that doesn't depend on sleep, and doesn't implode when you don't get enough," says Walker.
READ MORE:
* How much sleep do you need?
* What your sleeping position says about you
* Dr Libby: Five ways to improve your sleep
Walker's new book, Why We Sleep: The New Science of Sleep and Dreams, has been among the top 10 bestsellers in Britain for nine weeks. It drives home an unwelcome message - that hardly any of us get enough sleep and we're doing ourselves damage as a result.
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A range of sleeping problems are associated with a large majority (about 96%) of the people suffering from Parkinson’s disease (PD) and unless they are recognized and tackled effectively, they can give rise to serious consequences. Often the sleep disorders are an early indicator of this impending neurodegenerative disorder, even before the appearance of motor symptoms, and can manifest as restless sleep, nightmares, vivid dreams, acting out dreams during sleep, and excessive daytime sleepiness. These sleep-related problems can affect the quality of life in PD patients, resulting in fatigue, poor attention, memory deficits, and predisposition to accidents.
No matter your age or physical ability, there are steps you can take to keep the mind and body active. Despite the efforts of researchers around the globe, there is currently no known cure for dementia. However, there are things you can do to help slow the progression, alleviate the symptoms or even reduce your likelihood of getting the disease in the first place.
www.dementiadaily.org.au/healthy-starts-here/
Younger onset Dementia? You have not been forgotten...
An information sheet about younger onset dementia is in the appendix of this toolkit. This information sheet can be given to the NDIA representative during your planning meeting. This will help them understand the impact of younger onset dementia. You can add personal information to this sheet - outline the symptoms you experience, how younger onset dementia has changed your life and how this impacts on your day-to-day life and your carer and/or family.
YOUR NDIS GOALS:
It is important to tell the NDIA about your goal/s. These will be listed in your NDIS plan to let the NDIA know what is important to you and what support you need. It is useful to prioritise your two main goals prior to your NDIS meeting.
When thinking about your goals, ask yourself questions such as:
• What are the things that are most important to me?
• What are the things I would most like to change?
• What would I like to do with less help from others?
• Are there new things I would like to try? You might have goals in different areas of your life including:
• Daily life
• Living arrangements
• Relationships
• Health and wellbeing
• Learning
• Work
• Social and community activities
• Choice and control
Dementia Australia has launched a new resource to support people living with younger onset dementia and their carers when navigating the National Disability Insurance Scheme (NDIS).
Dementia Australia thanks the NSW Department of Family and Community Services for funding this resource. The NDIS Toolkit for People Living with Younger Onset Dementia and their Carers can be accessed by clicking here or by calling the National Dementia Helpline on 1800 100 500.
14 November, 2017
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The Brain: Dementia reveals compelling progress towards understanding and treating this devastating condition.
Download now via the Queensland Brain Institute: https://qbi.uq.edu.au/files/26953/The-BRAIN-Dementia-QBI.pdf
World Alzheimer’s Day, 21 September, 2017.
DEFINITION: Dementia is not a single disease, but an umbrella term describing a collection of symptoms stemming from a range of conditions that cause the brain to progressively deteriorate. What distinguishes dementia from normal cognitive decline in ageing is that distinct brain areas are affected and this severely impacts the ability to carry out normal daily activities.
Many thanks for this most comprehensive study. This insight is vital for loved ones and their carers.
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Worried about your memory?
A new booklet to find out about the signs and symptoms of dementia, when you should be concerned, how you may be able to reduce your risk of dementia and where to get more help.
Read the Worried About Your Memory booklet now!
Or download just the "Worried about your memory" checklist
Note: the presence of the changes in the checklist does not necessarily mean you have, or will develop, Alzheimer’s disease or another type of dementia. See your doctor.
Physical exercise is essential for maintaining good blood flow to the brain and may encourage new brain cell growth and survival. This sheet outlines the role that physical exercise can play in reducing the risk of developing dementia and the benefits it offers to people with dementia.
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Ultrasound holds promise for Alzheimer's - Ultrasound can improve the delivery of a therapeutic antibody that targets Alzheimer's disease and could also help treat Parkinson's and motor neuron disease.
Source: AAP
Australian researchers say they have made a promising step in the future treatment of Alzheimer’s disease after discovering ultrasound can effectively and safely deliver drugs to the damaged brain. Scientists at the Queensland Brain Institute found the non-invasive technique successfully penetrated the blood-brain barrier to deliver a therapeutic antibody to the brain. This then slowed the progression of Alzheimer’s disease in mice, according to a study published in journal Brain.
One of the major challenges inhibiting the treatment of Alzheimer’s is that the majority of drugs designed to treat the brain disease don’t make it into the brain. “Ultrasound safely opens up the blood-brain barrier just a tiny bit and just for short time to let the antibody into the brain and importantly into the nerve cells where the damage occurs,” said professor Jurgen Gotz lead researcher at the QBI.
Alzheimer’s disease is the most common form of dementia, with the number of dementia cases in Australia expected to rise to 900,000 by 2050.
Upcoming Seminars in Queensland:
https://www.alzheimersonline.org/page/our-services/Education-Training/Workshops-and-Seminars/
Living with Memory Loss
Living with Memory Loss courses are run throughout the year and dates can be tailored to suit the needs of participants. Phone 1800 100 500
The Living with Memory Loss program is designed specifically for people in the early stages of dementia who want to share their experiences or feelings with others in the same situation. Participants are able to bring a carer, family member or friend with them if they like. The program provides accurate information about brain function and focuses on ways to help maintain a person's abilities as well as offering practical strategies for living with dementia.
There are also programs for people with younger onset dementia (diagnosis of dementia before the age of 65 years).
Cost: Free (funded by the Australian Government)
Suitable for: Participants must have a diagnosis of dementia or be accompanying a person with a diagnosis.
Content covered includes:
- Symptoms and diagnosis
- Adapting to change
- Research and new drug treatments
- Practical strategies for everyday living
- Relationships with family and friends
- Looking after yourself
- Planning for the future
- Community services
- Where to from here?
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Definition of Dementia:
Dementia is a collective name for progressive degenerative brain syndromes which affect memory, thinking, behaviour and emotion. Alzheimer's disease is the most common cause of dementia. Vascular dementia is second, followed by Lewy Body Dementia, Fronto Temporal Lobar Degeneration...
Help Sheets http://www.dementia.org.au/about-dementia/resources/help-sheets
Help Sheets are available on this page as PDF files which you can read, download, and print.
More latest videos
For an in-depth look, click on areas of your interest in the UpToDate site. Take a look also at more in-depth info on Alzheimer's and other Dementia's.
Dementia is a general term used to indicate that a person has developed difficulties with reasoning, judgment, and memory. People who have dementia usually have some memory loss and difficulty with at least one other area, such as:
● Speaking or writing coherently (or understanding what is said or written)
● Recognizing familiar surroundings
● Planning and carrying out multi-step tasks.
In order to be considered dementia these changes must be severe enough to interfere with a person's independence and daily activities.
Dementia can be caused by several diseases that affect the brain. The most common cause is Alzheimer disease. Alzheimer disease accounts for 60 to 80 percent of all cases of dementia.
You can access the FREE Beyond the Basics (English) patient content in UpToDate by simply typing a term or phrase in the Search UptoDate box RH top. Look up your specific question — anything from a symptom you're concerned about to a condition or treatment you've been discussing with your healthcare provider.
Remember to print the information you find in UpToDate so you can discuss it with your healthcare provider.
with many thanks to UpToDate for giving access to this vital information for patients, their family and carers. It is Very much appreciated.
DementiaKT Hub
a NEW 'one-stop shop' to boost your dementia knowledge and practice by the Dementia Collaborative Research Centres.
Access resources:
- living with dementia
- professional care/services
- diagnosis and planning care
- prevention, lifestyle, risk
- education and training
- community and environment
- guidelines and policy
- measures and tools.
The main body of each module provides behaviour specific information relevant to the following aspects:
http://www.dementiaresearch.org.au/images/dcrc/output-files/328-2012_dbmas_bpsd_guidelines_guide.pdf
The aim of this document is to provide guidance for DBMAS clinicians in their role of assisting residential aged care facility staff, community care staff and family members caring for persons living with dementia, who present with behavioural and psychological symptoms of dementia (BPSD). A comprehensive evidence and practice-based overview of BPSD management principles is provided with practical strategies and interventions for assisting care staff and family carers to manage behaviours in dementia. The empirical evidence contained in this Guide to Good Practice, in combination with clinical expertise may assist in achieving improved outcomes for those with dementia.
A description of the behaviour and how it presents in dementia
Causes
Differential diagnosis
Measuring the behaviour
Prevalence
Effects on the person with dementia and others living with them or involved in providing care
Results from the literature search
Management strategies and the quality of the supporting evidence available for specific interventions for the BPSD
o Psychosocial and environmental interventions
o Biological interventions
Limitations of the evidence presented
Conclusions
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Dementia is a medical condition:
- Chronic progressive syndrome that affects the brain
- Decline in various aspects of mental functioning that impacts on daily life
- Organic damage - affects the brain selectively
- Fatal, no cure
- 3rd leading cause of death in Australia after cardiology and stroke.
Main Features of Dementia:
- Memory Impairment plus
- Aphasia - difficulty remembering the names of objects or words
- Apraxia - loss of motor skill or memory of how to do basic activities
- Agnosia - not able to remember the purpose or use of an object
- Disturbance in executive functioning - problem solving or decision making
Communication:
Communication relating to feelings and attitudes is made up of three parts:
- 55% is body language which is the message we give out by our facial expression, posture and gestures
- 38% is the tone and pitch of our voice
- 7% is the words we use.
with many thanks to Marnie Combers, Occupational Therapist, Alzheimer's Queensland, who's understanding of the condition is second to none.
Alzheimer’s disease symptoms- the most common cause of dementia:
- Losing track of the date or season
- Forgetting where you are or how you got there
- Inability to recall the names of friends and family
- Difficulty reading or writing, or finding the words to say what you want to say
- Forgetting your childhood memories
- Changing mood or personality, such as becoming more anxious or fearful
- Withdrawing socially or from activities you once enjoyed
- Changing sleep patterns
- Difficulty carrying out tasks such as balancing a checkbook or planning the home-cooked meals that once were easy to prepare
In early July 2017, the Alzheimer’s Association International Conference (AAIC) was held in London, bringing together a consortium of dementia researchers from around the globe. Of interest at the AAIC this year, were several new research studies linking sleeping disorders with Alzheimer’s disease.
While it isn’t new to suggest that sleeping disorders are linked with Alzheimer’s disease, this new research has added weight to the finding after analysing data from close to 800 participants from the Alzheimer’s Disease Neuroimaging Initiative (ADNI). This database contains brain scans, cognitive assessments, biomarkers, and demographic information from people with Alzheimer’s disease patients, individuals with mild cognitive impairment (MCI) and control groups.
Of specific interest in their study, the American based researchers were looking at the potential effects of sleep disordered breathing and Obstructive Sleep Apnoea on brain health, particularly in those diagnosed with either MCI or Alzheimer’s disease.
https://www.dementiadaily.org.au/a-good-nights-sleep-important-for-brain-health/
Dementia and Chronic conditions very well described at https://www.dementia.org.au/about-dementia/resources/dementia-and-chronic-conditions
There is increasing evidence that a number of different chronic conditions are associated with the development of cognitive impairment and dementia. Alzheimer’s Australia Victoria has developed the Dementia and Chronic Conditions Series Toolkits to improve support for people living with cognitive impairment or dementia and other chronic conditions. These resources will assist people working in the community, partners, families and carers to provide better support to the person in areas such as diagnosis of dementia and on-going management of their health.
If a feeding tube is recommended to deal with difficulty swallowing (as often happens to someone with severe dementia), think long and hard before giving the green light. Although feeding tubes are common practice in late-stage dementia, they haven't been shown to improve functional or nutritional status -- or to prolong life.
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on the Gold Coast:
Talking informally with other Carers Does Help!
Angels Carer Support Group. Held the last Tuesday of each month at St. Paul's Anglican Church Hall, 69 Palm Beach Ave, PALM BEACH
Held at St. Paul's Anglican Church Hall, 69 Palm Beach Ave, PALM BEACH -
Come just after 1.00pm for that cuppa and a chat. Often we have Speakers on subjects of interest to us as Carers - they start about 1.15pm and go to about 3.00pm. Other times we just sit, relax and enjoy each other's company and support each other as we face the daily caregiving tasks. Sit and chat, and take a brief break - for YOU :-) Father Phillip is a Great Supporter of the Angels.
YOU are most welcome to join us :-) Do take CARE of YOU too...
and to find out what else is going on in the Palm Beach area: http://palmbeachgoldcoast.net.au/events/
Living on the Gold Coast? Our Angels Carer Support Group are being helped by these Tradespeople... Those who are Caring for others give all of their time 24/7 for the well-being of their loved one. It is a relentless, loving and all exhausting time in their lives, and those for whom they care... Rob Cinelli of LJ Hooker, Shop 2/10 Fifth Avenue, Palm Beach Qld 4221 has been helping us with practical help and suggestions... It is making our lives that much easier. When you ring, do thank Rob Cinelli and his staff for their ongoing support of the Angels Carer Support Group, and let him know that he is Valued...
Upcoming Seminars in Queensland:
https://www.alzheimersonline.org/page/our-services/Education-Training/Workshops-and-Seminars/
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and for that extra peace of mind:
Brochures from the Public Trustee in Qld to help explain Enduring Power of Attorney for Financial, Personal and Health Matters...
Download the appropriate Brochures from this site:
- Let's Talk About Elder Abuse
- A Guide for Financial Management Clients
- A Guide for Beneficiaries
- Let's Talk About Bereavement
- Let's Talk About Intestacy
- Let's Talk About Enduring Powers of Attorney
- Let's Talk About Executor Services
- Let's Talk About Wills
https://www.flipsnack.com/publictrusteeqld/lets-talk-about-enduring-powers-of-attorney.html
To find out more:
http://www.pt.qld.gov.au/enduring-powers-of-attorney/about-enduring-powers-of-attorney/
CALL US: 1300 360 044
or Make An Enquiry: [email protected]
06 September 2021