Persons with Dementia: Skills for Addressing Challenging Behaviors
https://www.youtube.com/watch?v=hgVMKEnkvHo
Published on Apr 8, 2016
Elderly persons with dementia may present with challenging behaviors over the course of the illness. This video demonstrates skills that may be used by caregivers to address these behaviors. ; ; ; ; ; ; ; ; ; ; ; ; ; ;
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
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Update on Needs Based Assessment Program for SDCP
The Needs Based Assessment program is the service that determines eligibility for the government funded Specialist Dementia Care Program.
The Specialist Dementia Care Program (SDCP) is a new government initiative that provides individualised care for people with very severe behaviours and psychological symptoms of dementia.
The Needs Based Assessment (NBA) program is a relatively new program and has been fully operational since the beginning of 2020. There are currently ten SDCP units open across Australia, with two in Melbourne having to delay admissions due to COVID-19. To date, DSA has received 184 enquiries that were found to be appropriate for people with dementia to enter the NBA program, with greater than 90% proceeding to onsite assessment at their care home. Of the total number enquiries, approximately half have been found to be eligible for placement in the SDCP.
Forty-four people with dementia have currently entered the SDCP with the majority being men (66%) with an average age of 75.4 years and a diagnosis of Alzheimer's type dementia.
Due to current restrictions DSA has also conducted some assessments through tele-health with successful outcomes.
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Send in the clowns: looking at humour in aged care
By: Conor Burke in Practical Living, Top Stories November 13, 2019
Why don’t you come down to dementia?’”
“So, we come downstairs. She hits a little button and the doors open up and there’s a woman standing in front of me. She says, ‘I am a princess’. I said, ‘Your majesty,’” he recalls with a grin. “That just worked really well with her for an actor. It’s like an actor’s paradise. They invited you in, into their world. We spent an hour and a half there. And I left and left my ukulele behind. We went back to get it and we spent another hour there.
Laughter is the best medicine goes the old saying. A study from 2013 by researchers at UNSW, with help from the elder clowns from The Humour Foundation, seems to support this adage.
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RBD may be earliest marker of the movement disorder (this was Don's first indication of the Lewy Body - scary!!!)
A relatively rare sleep disorder characterized by acting out dreams during REM sleep -- often violently -- is closely linked to the movement disorder Parkinson's disease and may warn of Parkinson's decades before diagnosis.
People with REM sleep behavior disorder (RBD) do not have normal muscle paralysis during the dream phase of sleep.
The loss of motor inhibition is generally accompanied by often frightening dreams, which are "acted out" with arm flailing, kicking, punching, and sometimes, screaming and shouting.
"If patients are running in their dream, they 'run' in their beds. If they are fighting with someone in their dream, their arms may flail wildly. This can be dangerous for the patient and the patient's bed partner," Marina Romero-Ramos, PhD, of Aarhus University in Denmark, told MedPage Today.
The prevalence of RBD has been estimated to be from 0.38% to 1% in the general population, but the sleep disorder is much more common in patients with Parkinson's disease.
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and do remember that:
Here are 8 practical suggestions for coping with these behaviors:
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New evidence points to a waste-clearing problem in patients’ cells, rather than the accumulation of protein tangles, as the root cause of the neurodegenerative disease.
October 1, 2019 ASHLEY YEAGER
“We were originally looking for fibrils,” Shahmoradian says, “but unexpectedly, we found an abundance of . . . mitochondria, other organelles, and lipid membranes [in the Lewy bodies].” The researchers also found evidence of lysosomes, organelles that facilitate cellular waste removal. They did see α-synuclein in the Lewy bodies, as well, but the cores of the structures weren’t composed of twisted and tangled fibrils as researchers had thought. Instead, the protein was intermingled with other cellular material.
The study is one of many that raise questions about the prevailing idea that α-synuclein accumulation is the underlying cause of the neurodegeneration in Parkinson’s disease.
https://www.the-scientist.com/features/is-it-time-to-rethink-parkinsons-pathology-66449
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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.
National Dementia Helpline 1800 100 500 Monday - Friday 9am - 5pm
A free and confidential service where you can chat with caring and experienced professionals about dementia and memory loss concerns...
http://dementia.org.au/helpline Challenging behaviours? 1800 699 799.
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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.
01 April 2019
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
Specialist Dementia Care Program – assessment pathway round tables
The Specialist Dementia Care Program (SDCP) will establish 35 units to provide specialist dementia care to people who are experiencing very severe behavioural and psychological symptoms of dementia. A prototype will be operational by July 2019, with the next round of 14 units to be advertised in early 2019.
Round tables
The Department of Health is funding HammondCare and the University of New South Wales to develop an assessment pathway to determine client eligibility for care under the SDCP. Round tables will be held with potential referrers to the SDCP in all states and territories starting in Brisbane on 18 February 2019.
Registrations are still open for sessions from 20 February 2019. To find out dates, locations and to register, visit the Dementia Centre website.
Department of Health.
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An Absolute Must Read. From one who Actually Has Dementia... It will help you understand when you read "Tips for Dealing with Specific Dementia Problematic Behaviours" further down this page...
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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The National Center for Assisted Living circulated a booklet last year that provided a resource for people living in nursing homes who were concerned about bullying behaviour. The booklet identifies what constitutes bullying, who might be likely to become a bully, and the risk factors associated with becoming the victim of bullying.
The booklet says people who are living with dementia may display aggressive behaviours that could be construed as bullying. Sometimes people living with dementia may have a need that isn’t being met, or they may feel they are in a situation they can’t understand that prompts them to act aggressively. Sometimes people who are living with dementia lose some of their mental filter, which means they may say things that could be seen as bullying.
The booklet describes various types of bullying, including physical, verbal, relational, and even damage to property, and explains how nursing homes can prevent and manage bullying behaviour.
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Relaxation Techniques
Finding time for relaxation can help to maintain your energy levels and increase your wellbeing. Regular practice may even help to relax your muscles, reduce anxiety, improve your sleep and help you to think more clearly.
Some people like an active form of relaxation such as a game of tennis, or time spent in the garden. Others find they prefer something quieter such as listening to music or painting as a way to help them unwind.
While it may be hard to find the time or opportunity to stop and recharge; there are many different ways to relax, some that you can practice at home at a time that’s convenient for you.
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DEMENTIA AND DRIVING
"For many people, driving a car provides independence. Driving requires a high level of skill. Any decrease or loss of abilities due to illness, injury, disability or age can compromise your safety and that of other road users.
The Department of Transport and Main Roads, your doctor or friends and family may request you to undertake a driving assessment if a medical illness, disability or age is affecting your driving. A driving assessment can determine your ability to drive or learn to control a vehicle safely. This assessment can only be conducted by a qualified driver trained occupational therapist.
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Do be aware that some mental diseases may mis-interrupt Your facial expression.
Facial Emotion Recognition in Schizophrenia: Intensity Effects and Error Pattern.
https://www.researchgate.net/profile/Ruben_Gur/publication/9077042_Facial_Emotion_Recognition_in_Schizophrenia_Intensity_Effects_and_Error_Pattern/links/56f2965808aee034d8c63af1.pdf
Impaired recognition of neutral facial expressions in the schizophrenia group:
False attribution of emotion to non-emotional faces has been the main deficit in depression and may be of particular interest in schizophrenia, where neutral cues are frequently misidentified as unpleasant or threatening.
Impaired recognition of neutral or non-emotional faces in the schizophrenia group may have implications for understanding symptoms. During an acute psychotic episode, people with schizophrenia frequently misinterpret as significant neutral occurrences that are personally irrelevant. Perhaps even stable patients are more likely to identify neutral facial expressions as emotional, imputing negative valence to such expressions.
Impaired recognition of neutral or non-emotional faces in the schizophrenia group may have implications for understanding symptoms. During an acute psychotic episode, people with schizophrenia frequently misinterpret as significant neutral occurrences that are personally irrelevant. Perhaps even stable patients are more likely to identify neutral facial expressions as emotional, imputing negative valence to such expressions.
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https://www.healthyplace.com/anxiety-panic/anxiety-information/anxiety-self-help-ways-to-help-anxiety/
Anxiety help comes in many forms including medication, therapy, alternative treatments and anxiety self-help. Self-help for anxiety is simply anything you can do to help improve your anxiety symptoms. These ways of helping your anxiety may be particularly beneficial when combined with other anxiety treatments.
Some ways to help your anxiety include:
Abbey pain scale
The Abbey Pain Scale is used for people with dementia or who cannot verbalise.
https://www.apsoc.org.au/PDF/Publications/APS_Pain-in-RACF-2_Abbey_Pain_Scale.pdf
You can help your loved one by filling this out. It will give you a greater understanding of just 'what IS going on'.
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Tips for Dealing with Specific Dementia Problematic Behaviours
Carrie Hill, Ph.D. and Natalie Reiss, Ph.D. May 21st 2008
§ A sense of Touch - Touch has been shown to decrease anxiety, depression, irritability, fear, and fatigue. Although other communication centers in the body are in decline, the ability to sense emotions through touch appears to be undamaged by dementia.
Good hand holds: Stroke the hand, give gentle squeezes, massage it as you trim nails, rub lotion or scented oil into the skin.
§ Agitation - Individuals with dementia frequently become restless, anxious, or upset (when filling out a behavior chart, it is helpful to use specific, concrete words that clearly describe what your loved one is doing so you can truly track whether your changes work to decrease the behavior). To decrease agitation, listen to the person as he or she expresses her frustration to get a clue about what kind of antecedent is a trigger; try to eliminate and/or decrease triggers as much as possible. Pain, discomfort (being too hot, too cold, hungry, needing to use the bathroom, etc.), frustration, and overstimulation are all common triggers of agitation. It is also very important to examine your behavior in response to the person. If you are not already doing so, reassure the person that you are there to provide assistance and comfort. If it seems like the person needs something to do, try redirection to an enjoyable activity.
Sensory stimulation for Alzheimer's patients and people with other forms of dementia has been shown to decrease agitation and restlessness, as well as improve sleep.
https://www.dementia.org.au/national/support-and-services/carers/preparing-your-home
Environment:
01 Adapting your home
02 Supportive Aids
03 How to design dementia-friendly care environments
§ Aggression - Aggressive behavior can include shouting, cornering someone, raising a hand to someone, or actually pushing or hitting. Unfortunately, aggression among people with dementia can happen suddenly and seemingly without warning. Try to identify what triggered the aggression so that the antecedent can be eliminated or modified as soon as possible. As difficult as it may be, react in a calm, reassuring way and focus on the person's feelings. Reduce environmental distractions as much as possible, such as loud noises or potentially frightening shadows or movements. Redirecting an aggressive person to an enjoyable activity can be remarkably effective.
https://www.dementia.org.au/national/support-and-services/carers/behaviour-changes/aggressive-behaviours
§ Bullying - The National Center for Assisted Living circulated a booklet last year that provided a resource for people living in nursing homes who were concerned about bullying behaviour. The booklet identifies what constitutes bullying, who might be likely to become a bully, and the risk factors associated with becoming the victim of bullying.
The booklet says people who are living with dementia may display aggressive behaviours that could be construed as bullying. Sometimes people living with dementia may have a need that isn’t being met, or they may feel they are in a situation they can’t understand that prompts them to act aggressively.
Sometimes people who are living with dementia lose some of their mental filter, which means they may say things that could be seen as bullying.
The booklet describes various types of bullying, including physical, verbal, relational, and even damage to property, and explains how nursing homes can prevent and manage bullying behaviour.
§ Repetition - People with dementia often repeat a word, question, or action over and over again (e.g., saying "What are we doing today?" repeatedly). This behavior is usually harmless, but it can be unnerving and annoying for those who are caring for the person. Repetitive behavior is usually a sign of insecurity, since people with dementia are often looking for something comfortable and familiar - something over which they have some degree of control. To address repetition, look for a specific antecedent or reason for the repetition as well as for the emotion behind it. This can reduce your chances of responding impatiently with the person. If the repetition is an action, try turning it into an activity that makes the person feel useful. For example, if the person is constantly fidgeting with his hands, try giving him some socks to sort or some knick knacks to clean.
§ Hallucinations - Hallucinations are sensory experiences that seem real, but are not. The most common hallucinations are visual (i.e., seeing something that is not really there) and auditory (i.e., hearing something that is not really there), but hallucinations can also occur in regard to taste, smell, and touch. Because hallucinations seem real to those with dementia, it is not helpful to try to convince the person that she is imagining things. Instead, recognize the person's feelings, reassure the person that you are there to help, and redirect her to a pleasant activity. Also consider whether the hallucination is actually bothersome. If it is a "nice" hallucination (e.g., seeing a pretty orchard outside that is not really there), there may be no benefit in trying to discourage the behavior.
§ Suspicion - Memory loss and disorientation can cause individuals with dementia to perceive situations inaccurately. They may become suspicious of others - even those close to them - and accuse them of theft, infidelity, or other offenses. As hurtful as it may be to be accused of something you did not do, try not to become offended. Remember that the behavior is caused by a disease that is affecting the person's brain. Try to imagine what it would be like to continuously think your possessions are being taken or hidden (because you cannot remember where you put them). Do not try to argue with the person or convince him or her of your innocence. Instead, share a simple response with the person (e.g., "I see that you're upset that your purse is missing; I'll do my best to find it for you.") and avoid giving complicated explanations. Redirection to another activity can also be effective in these situations. Another option is to store "back-ups" of commonly misplaced items (e.g., hats, wallets).
§ Apathy - Apathy is a lack of interest in or motivation to engage in activities. While apathy may not seem like a serious behavior problem, it is not healthy for someone with dementia to simply sit around passively. Try to find out what may be triggering the apathy (e.g., being ignored or becoming overwhelmed with a task) as well as what kinds of consequences may be reinforcing it (again, being ignored, not having appropriate choices of pleasant activities). Even though the person is ill, it is important to keep him or her moving and as active as possible in order to maintain physical health and to prevent depression. Try adapting previously pleasurable activities so the person can participate at a level that is comfortable and not overwhelming. Even a small amount of activity is better than none at all.
§ Confusion - Dementia often causes confusion about person, place, and time. In other words, the person may still know who he or she is, but may not recognize others and/or the current location, time, date, or year. An individual with dementia may also become confused about the purpose of objects, such as forks or pens. As frustrating as this can be for caregivers, the best way to respond is to stay calm and provide simple, clear, positive answers when the person asks for help. For example, if the person seems confused about the purpose of a spoon, simply say, "Here's your spoon for eating your soup." You could also calmly show the person how to use the utensil (e.g., by saying "watch me"). Never scold the person or talk to him or her in a belittling way for becoming confused.
§ Sundowning - Sundowning is a term used to describe behaviours that intensify (e.g., increased confusion and agitation) in the late afternoon and early evening, and is most common with Alzheimer's disease. There are several theories about why sundowning occurs, such as increased fatigue (and as a result, a reduced ability to tolerate stressful situations, such as a chaotic dinnertime or a rushed bedtime routine) or increasing confusion due to darkness and shadows. The best way to approach sundowning is to make late afternoons and evenings as simple and relaxing as possible. Reduce distractions, unscheduled activities, and behaviours that could be done at a different time of the day (e.g., switch to bathing in the morning) and keep rooms well-lit until bedtime.
§ Wandering - One of the more dangerous behaviours among individuals with dementia, wandering may be goal-directed (e.g., the person thinks that he or she is going to a job or going "home" to a childhood residence) or non-goal-directed (i.e., the person wanders aimlessly). To reduce the frequency of wandering, make sure the person has plenty of supervised activity to channel his or her energy. Redirecting the person to another activity can also work. Interestingly, dementia sometimes affects perception in such a way that environmental approaches can help reduce wandering. For instance, a black square painted on the floor in front of a doorway - or simply a black doormat - may be perceived as a hole, which can prevent the person from leaving the home.
§ Distress - People with dementia can become upset and distressed as a result of medical, physical, emotional or environmental factors and these expressions are often indicative of an unmet need. It is important to understand why people with dementia become distressed and find ways to help or prevent it.
https://www.nps.org.au/search?q=Living+with+dementia%3A+making+treatment+decisions&scope=nps&age=any&category=all&sort=most-relevant
Strategies to address distress...
The underlying cause leading to distress should be identified and addressed by families, friends or carers using a positive approach. People with dementia may use hand gestures, body language, facial expressions, eye contact and actions in their attempts to help their family members, friends or carers identify the reasons for their distress.
§ Resistance to taking a shower - can be the most distressing and difficult of all a Caregiver tasks. Do keep an eye when/if they have to go into a nursing home.
There are many "creative" ways to get a person to take a bath or shower. Getting a person to take a bath who does not want to demands approaches that "fit" the patient.
§ Positioning and Lifting Patients in bed
And don't forget that when your loved one returns home from hospital, that YOU are the one who will be doing most of the 24/7 care. Do ask the visiting Nurse or Allied Health Worker to teach you how to lift them up and make them comfortable in their bed. You need to be particularly aware of bedsores if they cannot move in bed themselves.
Have a look here so that you know how you can help them feel comfortable when you are re-positioning and lifting them in their bed.
POSITIONING AND LIFTING PATIENTS-Title2
https://www.youtube.com/watch?v=H68Sa04s_1s
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Advanced Dementia Day Respite Program
Churches of Christ Care - Community Care Gold Coast
The Advanced Dementia Day Respite Program is run from the secure unit at Tricare Labrador, in partnership with Churches of Christ Care.
This program is suitable for clients who are no longer able to attend other day respite centres due to their high care needs.
The cost is $25. per day for the care provided.
Commonwealth Carers' Respite Centre has generously funded the cost for the lunch provided by Tricare.
Transport is available if required with a fee of $7. each eay.
Please ring 07 5539 7600 if you would like to discuss this program. Our friendly staff will be happy to help you.
My Aged Care Service type - Centre based respite.
Churches of Christ Care.
18 September 2020
https://www.youtube.com/watch?v=hgVMKEnkvHo
Published on Apr 8, 2016
Elderly persons with dementia may present with challenging behaviors over the course of the illness. This video demonstrates skills that may be used by caregivers to address these behaviors. ; ; ; ; ; ; ; ; ; ; ; ; ; ;
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
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Update on Needs Based Assessment Program for SDCP
The Needs Based Assessment program is the service that determines eligibility for the government funded Specialist Dementia Care Program.
The Specialist Dementia Care Program (SDCP) is a new government initiative that provides individualised care for people with very severe behaviours and psychological symptoms of dementia.
The Needs Based Assessment (NBA) program is a relatively new program and has been fully operational since the beginning of 2020. There are currently ten SDCP units open across Australia, with two in Melbourne having to delay admissions due to COVID-19. To date, DSA has received 184 enquiries that were found to be appropriate for people with dementia to enter the NBA program, with greater than 90% proceeding to onsite assessment at their care home. Of the total number enquiries, approximately half have been found to be eligible for placement in the SDCP.
Forty-four people with dementia have currently entered the SDCP with the majority being men (66%) with an average age of 75.4 years and a diagnosis of Alzheimer's type dementia.
Due to current restrictions DSA has also conducted some assessments through tele-health with successful outcomes.
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Send in the clowns: looking at humour in aged care
By: Conor Burke in Practical Living, Top Stories November 13, 2019
Why don’t you come down to dementia?’”
“So, we come downstairs. She hits a little button and the doors open up and there’s a woman standing in front of me. She says, ‘I am a princess’. I said, ‘Your majesty,’” he recalls with a grin. “That just worked really well with her for an actor. It’s like an actor’s paradise. They invited you in, into their world. We spent an hour and a half there. And I left and left my ukulele behind. We went back to get it and we spent another hour there.
Laughter is the best medicine goes the old saying. A study from 2013 by researchers at UNSW, with help from the elder clowns from The Humour Foundation, seems to support this adage.
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RBD may be earliest marker of the movement disorder (this was Don's first indication of the Lewy Body - scary!!!)
- by Salynn Boyles, Contributing Writer November 04, 2019
A relatively rare sleep disorder characterized by acting out dreams during REM sleep -- often violently -- is closely linked to the movement disorder Parkinson's disease and may warn of Parkinson's decades before diagnosis.
People with REM sleep behavior disorder (RBD) do not have normal muscle paralysis during the dream phase of sleep.
The loss of motor inhibition is generally accompanied by often frightening dreams, which are "acted out" with arm flailing, kicking, punching, and sometimes, screaming and shouting.
"If patients are running in their dream, they 'run' in their beds. If they are fighting with someone in their dream, their arms may flail wildly. This can be dangerous for the patient and the patient's bed partner," Marina Romero-Ramos, PhD, of Aarhus University in Denmark, told MedPage Today.
The prevalence of RBD has been estimated to be from 0.38% to 1% in the general population, but the sleep disorder is much more common in patients with Parkinson's disease.
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and do remember that:
- People lose functional abilities in the opposite order to which they acquire them
- ‘Early loss’ ADLs like housework, transport, handling money, managing medicines (domestic functioning) are gained last and lost first
- ‘Late loss’ ADLs like dressing, toileting, feeding and bed mobility (self-care) are gained 1st and lost last
- It is reasonable to assume that, if a person can do early loss ADLs, they can also do late loss (supports screening)
Here are 8 practical suggestions for coping with these behaviors:
- Allow extra time – When you’re helping your loved one get ready for the day, plan ahead so that you will not have to rush. A slow, calm approach can prevent or minimize a negative reaction.
- If agitation or aggression increases, take a break – For example, if you are trying to help your husband get dressed and he’s becoming more resistive and angry, take a 15 minute break and then come back in the room to try again. Fifteen minutes later may feel like a new day to him, so return with a smile and try again. Don’t use this as a threat to him, but rather as a way to allow him a little control over his day. It also provides you with a chance to take a deep breath and refill your patience level.
- Provide something for your loved one to hold while you give care – Have you ever had the experience of getting slapped or pushed away when you’re trying to help someone with Parkinson’s dementia or Alzheimer’s? Maybe you’re helping brush her teeth and it’s just not going well. If you’re able, try to engage her by asking for her help with brushing the teeth. If this doesn’t work, give her something to do or hold with her hands. This serves as a distraction for her and also helps you be able to provide necessary care. I’ve seen several individuals respond very positively when offered a baby doll, stuffed animal, their wallet, or a book to hold while care is provided.
- Approach with a smile – It’s easy to expect a negative response from your dad if the day before was not a good one. However, individuals with Alzheimer’s or other dementias often react to our facial expression and non-verbal signs, so watch what you project. The words you speak may not always make sense to them, but if you’re smiling and gentle each time you approach them, this can help calm them and reassure them.
- Explain before doing – While your daily routine may always be the same as you care for your loved one, don’t assume that they know why you’re there and what you want them to do. Using simple words and short sentences, explain that it’s time to get dressed and that you would like to help them. You can also try using a picture flashcard to visually display what you would like him or her to do.
- Focus on the feeling behind the behaviour – Do you ever feel like it’s a battle between opposing teams just to get your spouse ready for the day? Try to validate, or acknowledge, the feelings he has rather than focusing on the behavior he exhibits. For the person with Parkinson’s dementia or Alzheimer’s, sometimes hearing you put into words what he’s feeling can put you both on the same team in his mind. You might identify his frustration or pain, empathize with him, and reassure him that you love him.
- Depersonalize – It can be very difficult emotionally when loved ones with Parkinson’s dementia or Alzheimer’s accuse a spouse or adult child of purposely hurting them, hiding things, betraying them or lying to them. To depersonalize this, remember that this is the disease speaking, and not your loved one. I know of a situation where a wife continually fretted that her husband was going to kick her out of their home and not allow her to call anyone for help. They had been married for 45 years and there was no basis for her fears. Despite reassurance, promises, and declarations that his love for her would always continue, she persisted in this fear and accused him daily of planning for the time when he would make her leave their home. I spoke with him several times and reminded him that this behavior was a result of her confusion, rather than her true feelings for him. This helped him to remain calm and avoid verbally escalating the argument. Eventually she was able to let this delusion go. Reminding yourself that the disease is a common enemy of both of you can help you to decrease your loved one’s agitation by allowing you to approach the situation more calmly.
- Ask for help – Know when to get assistance. As the caregiver, if your own physical, emotional or mental health is declining, seek help. A physician, social worker, other family members and community organizations such as your local Association or Organization can all provide direction for assistance.
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New evidence points to a waste-clearing problem in patients’ cells, rather than the accumulation of protein tangles, as the root cause of the neurodegenerative disease.
October 1, 2019 ASHLEY YEAGER
“We were originally looking for fibrils,” Shahmoradian says, “but unexpectedly, we found an abundance of . . . mitochondria, other organelles, and lipid membranes [in the Lewy bodies].” The researchers also found evidence of lysosomes, organelles that facilitate cellular waste removal. They did see α-synuclein in the Lewy bodies, as well, but the cores of the structures weren’t composed of twisted and tangled fibrils as researchers had thought. Instead, the protein was intermingled with other cellular material.
The study is one of many that raise questions about the prevailing idea that α-synuclein accumulation is the underlying cause of the neurodegeneration in Parkinson’s disease.
https://www.the-scientist.com/features/is-it-time-to-rethink-parkinsons-pathology-66449
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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.
National Dementia Helpline 1800 100 500 Monday - Friday 9am - 5pm
A free and confidential service where you can chat with caring and experienced professionals about dementia and memory loss concerns...
http://dementia.org.au/helpline Challenging behaviours? 1800 699 799.
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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.
01 April 2019
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
Specialist Dementia Care Program – assessment pathway round tables
The Specialist Dementia Care Program (SDCP) will establish 35 units to provide specialist dementia care to people who are experiencing very severe behavioural and psychological symptoms of dementia. A prototype will be operational by July 2019, with the next round of 14 units to be advertised in early 2019.
Round tables
The Department of Health is funding HammondCare and the University of New South Wales to develop an assessment pathway to determine client eligibility for care under the SDCP. Round tables will be held with potential referrers to the SDCP in all states and territories starting in Brisbane on 18 February 2019.
Registrations are still open for sessions from 20 February 2019. To find out dates, locations and to register, visit the Dementia Centre website.
Department of Health.
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An Absolute Must Read. From one who Actually Has Dementia... It will help you understand when you read "Tips for Dealing with Specific Dementia Problematic Behaviours" further down this page...
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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The National Center for Assisted Living circulated a booklet last year that provided a resource for people living in nursing homes who were concerned about bullying behaviour. The booklet identifies what constitutes bullying, who might be likely to become a bully, and the risk factors associated with becoming the victim of bullying.
The booklet says people who are living with dementia may display aggressive behaviours that could be construed as bullying. Sometimes people living with dementia may have a need that isn’t being met, or they may feel they are in a situation they can’t understand that prompts them to act aggressively. Sometimes people who are living with dementia lose some of their mental filter, which means they may say things that could be seen as bullying.
The booklet describes various types of bullying, including physical, verbal, relational, and even damage to property, and explains how nursing homes can prevent and manage bullying behaviour.
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Relaxation Techniques
Finding time for relaxation can help to maintain your energy levels and increase your wellbeing. Regular practice may even help to relax your muscles, reduce anxiety, improve your sleep and help you to think more clearly.
Some people like an active form of relaxation such as a game of tennis, or time spent in the garden. Others find they prefer something quieter such as listening to music or painting as a way to help them unwind.
While it may be hard to find the time or opportunity to stop and recharge; there are many different ways to relax, some that you can practice at home at a time that’s convenient for you.
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DEMENTIA AND DRIVING
"For many people, driving a car provides independence. Driving requires a high level of skill. Any decrease or loss of abilities due to illness, injury, disability or age can compromise your safety and that of other road users.
The Department of Transport and Main Roads, your doctor or friends and family may request you to undertake a driving assessment if a medical illness, disability or age is affecting your driving. A driving assessment can determine your ability to drive or learn to control a vehicle safely. This assessment can only be conducted by a qualified driver trained occupational therapist.
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Do be aware that some mental diseases may mis-interrupt Your facial expression.
Facial Emotion Recognition in Schizophrenia: Intensity Effects and Error Pattern.
https://www.researchgate.net/profile/Ruben_Gur/publication/9077042_Facial_Emotion_Recognition_in_Schizophrenia_Intensity_Effects_and_Error_Pattern/links/56f2965808aee034d8c63af1.pdf
Impaired recognition of neutral facial expressions in the schizophrenia group:
False attribution of emotion to non-emotional faces has been the main deficit in depression and may be of particular interest in schizophrenia, where neutral cues are frequently misidentified as unpleasant or threatening.
Impaired recognition of neutral or non-emotional faces in the schizophrenia group may have implications for understanding symptoms. During an acute psychotic episode, people with schizophrenia frequently misinterpret as significant neutral occurrences that are personally irrelevant. Perhaps even stable patients are more likely to identify neutral facial expressions as emotional, imputing negative valence to such expressions.
- Neutral expressions were more commonly mistaken as sad or happy followed by disgusted in the schizophrenia group.
- Happy faces were most commonly misrecognized as neutral, followed by sad, then disgusted expressions.
- Sad faces were most commonly misrecognized as neutral, followed by disgusted, then angry expressions.
- Angry faces were most commonly misrecognized as neutral, followed by disgusted, then fearful expressions.
- Fearful faces were most commonly misrecognized as neutral, followed by disgusted, then sad expressions.
- Disgusted faces were most commonly misrecognized as sad, followed by angry, then fearful expressions.
Impaired recognition of neutral or non-emotional faces in the schizophrenia group may have implications for understanding symptoms. During an acute psychotic episode, people with schizophrenia frequently misinterpret as significant neutral occurrences that are personally irrelevant. Perhaps even stable patients are more likely to identify neutral facial expressions as emotional, imputing negative valence to such expressions.
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https://www.healthyplace.com/anxiety-panic/anxiety-information/anxiety-self-help-ways-to-help-anxiety/
Anxiety help comes in many forms including medication, therapy, alternative treatments and anxiety self-help. Self-help for anxiety is simply anything you can do to help improve your anxiety symptoms. These ways of helping your anxiety may be particularly beneficial when combined with other anxiety treatments.
Some ways to help your anxiety include:
- Learning about your illness
- Making anxiety-reducing lifestyle changes
- Creating a support network
Abbey pain scale
The Abbey Pain Scale is used for people with dementia or who cannot verbalise.
https://www.apsoc.org.au/PDF/Publications/APS_Pain-in-RACF-2_Abbey_Pain_Scale.pdf
You can help your loved one by filling this out. It will give you a greater understanding of just 'what IS going on'.
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Tips for Dealing with Specific Dementia Problematic Behaviours
Carrie Hill, Ph.D. and Natalie Reiss, Ph.D. May 21st 2008
§ A sense of Touch - Touch has been shown to decrease anxiety, depression, irritability, fear, and fatigue. Although other communication centers in the body are in decline, the ability to sense emotions through touch appears to be undamaged by dementia.
Good hand holds: Stroke the hand, give gentle squeezes, massage it as you trim nails, rub lotion or scented oil into the skin.
§ Agitation - Individuals with dementia frequently become restless, anxious, or upset (when filling out a behavior chart, it is helpful to use specific, concrete words that clearly describe what your loved one is doing so you can truly track whether your changes work to decrease the behavior). To decrease agitation, listen to the person as he or she expresses her frustration to get a clue about what kind of antecedent is a trigger; try to eliminate and/or decrease triggers as much as possible. Pain, discomfort (being too hot, too cold, hungry, needing to use the bathroom, etc.), frustration, and overstimulation are all common triggers of agitation. It is also very important to examine your behavior in response to the person. If you are not already doing so, reassure the person that you are there to provide assistance and comfort. If it seems like the person needs something to do, try redirection to an enjoyable activity.
Sensory stimulation for Alzheimer's patients and people with other forms of dementia has been shown to decrease agitation and restlessness, as well as improve sleep.
https://www.dementia.org.au/national/support-and-services/carers/preparing-your-home
Environment:
01 Adapting your home
02 Supportive Aids
03 How to design dementia-friendly care environments
§ Aggression - Aggressive behavior can include shouting, cornering someone, raising a hand to someone, or actually pushing or hitting. Unfortunately, aggression among people with dementia can happen suddenly and seemingly without warning. Try to identify what triggered the aggression so that the antecedent can be eliminated or modified as soon as possible. As difficult as it may be, react in a calm, reassuring way and focus on the person's feelings. Reduce environmental distractions as much as possible, such as loud noises or potentially frightening shadows or movements. Redirecting an aggressive person to an enjoyable activity can be remarkably effective.
https://www.dementia.org.au/national/support-and-services/carers/behaviour-changes/aggressive-behaviours
§ Bullying - The National Center for Assisted Living circulated a booklet last year that provided a resource for people living in nursing homes who were concerned about bullying behaviour. The booklet identifies what constitutes bullying, who might be likely to become a bully, and the risk factors associated with becoming the victim of bullying.
The booklet says people who are living with dementia may display aggressive behaviours that could be construed as bullying. Sometimes people living with dementia may have a need that isn’t being met, or they may feel they are in a situation they can’t understand that prompts them to act aggressively.
Sometimes people who are living with dementia lose some of their mental filter, which means they may say things that could be seen as bullying.
The booklet describes various types of bullying, including physical, verbal, relational, and even damage to property, and explains how nursing homes can prevent and manage bullying behaviour.
§ Repetition - People with dementia often repeat a word, question, or action over and over again (e.g., saying "What are we doing today?" repeatedly). This behavior is usually harmless, but it can be unnerving and annoying for those who are caring for the person. Repetitive behavior is usually a sign of insecurity, since people with dementia are often looking for something comfortable and familiar - something over which they have some degree of control. To address repetition, look for a specific antecedent or reason for the repetition as well as for the emotion behind it. This can reduce your chances of responding impatiently with the person. If the repetition is an action, try turning it into an activity that makes the person feel useful. For example, if the person is constantly fidgeting with his hands, try giving him some socks to sort or some knick knacks to clean.
§ Hallucinations - Hallucinations are sensory experiences that seem real, but are not. The most common hallucinations are visual (i.e., seeing something that is not really there) and auditory (i.e., hearing something that is not really there), but hallucinations can also occur in regard to taste, smell, and touch. Because hallucinations seem real to those with dementia, it is not helpful to try to convince the person that she is imagining things. Instead, recognize the person's feelings, reassure the person that you are there to help, and redirect her to a pleasant activity. Also consider whether the hallucination is actually bothersome. If it is a "nice" hallucination (e.g., seeing a pretty orchard outside that is not really there), there may be no benefit in trying to discourage the behavior.
§ Suspicion - Memory loss and disorientation can cause individuals with dementia to perceive situations inaccurately. They may become suspicious of others - even those close to them - and accuse them of theft, infidelity, or other offenses. As hurtful as it may be to be accused of something you did not do, try not to become offended. Remember that the behavior is caused by a disease that is affecting the person's brain. Try to imagine what it would be like to continuously think your possessions are being taken or hidden (because you cannot remember where you put them). Do not try to argue with the person or convince him or her of your innocence. Instead, share a simple response with the person (e.g., "I see that you're upset that your purse is missing; I'll do my best to find it for you.") and avoid giving complicated explanations. Redirection to another activity can also be effective in these situations. Another option is to store "back-ups" of commonly misplaced items (e.g., hats, wallets).
§ Apathy - Apathy is a lack of interest in or motivation to engage in activities. While apathy may not seem like a serious behavior problem, it is not healthy for someone with dementia to simply sit around passively. Try to find out what may be triggering the apathy (e.g., being ignored or becoming overwhelmed with a task) as well as what kinds of consequences may be reinforcing it (again, being ignored, not having appropriate choices of pleasant activities). Even though the person is ill, it is important to keep him or her moving and as active as possible in order to maintain physical health and to prevent depression. Try adapting previously pleasurable activities so the person can participate at a level that is comfortable and not overwhelming. Even a small amount of activity is better than none at all.
§ Confusion - Dementia often causes confusion about person, place, and time. In other words, the person may still know who he or she is, but may not recognize others and/or the current location, time, date, or year. An individual with dementia may also become confused about the purpose of objects, such as forks or pens. As frustrating as this can be for caregivers, the best way to respond is to stay calm and provide simple, clear, positive answers when the person asks for help. For example, if the person seems confused about the purpose of a spoon, simply say, "Here's your spoon for eating your soup." You could also calmly show the person how to use the utensil (e.g., by saying "watch me"). Never scold the person or talk to him or her in a belittling way for becoming confused.
§ Sundowning - Sundowning is a term used to describe behaviours that intensify (e.g., increased confusion and agitation) in the late afternoon and early evening, and is most common with Alzheimer's disease. There are several theories about why sundowning occurs, such as increased fatigue (and as a result, a reduced ability to tolerate stressful situations, such as a chaotic dinnertime or a rushed bedtime routine) or increasing confusion due to darkness and shadows. The best way to approach sundowning is to make late afternoons and evenings as simple and relaxing as possible. Reduce distractions, unscheduled activities, and behaviours that could be done at a different time of the day (e.g., switch to bathing in the morning) and keep rooms well-lit until bedtime.
§ Wandering - One of the more dangerous behaviours among individuals with dementia, wandering may be goal-directed (e.g., the person thinks that he or she is going to a job or going "home" to a childhood residence) or non-goal-directed (i.e., the person wanders aimlessly). To reduce the frequency of wandering, make sure the person has plenty of supervised activity to channel his or her energy. Redirecting the person to another activity can also work. Interestingly, dementia sometimes affects perception in such a way that environmental approaches can help reduce wandering. For instance, a black square painted on the floor in front of a doorway - or simply a black doormat - may be perceived as a hole, which can prevent the person from leaving the home.
§ Distress - People with dementia can become upset and distressed as a result of medical, physical, emotional or environmental factors and these expressions are often indicative of an unmet need. It is important to understand why people with dementia become distressed and find ways to help or prevent it.
https://www.nps.org.au/search?q=Living+with+dementia%3A+making+treatment+decisions&scope=nps&age=any&category=all&sort=most-relevant
Strategies to address distress...
The underlying cause leading to distress should be identified and addressed by families, friends or carers using a positive approach. People with dementia may use hand gestures, body language, facial expressions, eye contact and actions in their attempts to help their family members, friends or carers identify the reasons for their distress.
§ Resistance to taking a shower - can be the most distressing and difficult of all a Caregiver tasks. Do keep an eye when/if they have to go into a nursing home.
There are many "creative" ways to get a person to take a bath or shower. Getting a person to take a bath who does not want to demands approaches that "fit" the patient.
- For instance if the person is religious i tell them church is the next day and they of course always bathe before church.
- If being naked is a problem allow them to wear a gown or bathing suit.
- Bed baths are wonderful ways to bath someone who is resistant as each part of the body is covered until it is being washed. Then wash as much as they can and stop when the person becomes upset. Eventually, the entire body gets washed!
- Make sure they approach her with cues that will let her know what they would like her to do like a bar of soap and towels. Hopefully they have a non-institutional bath that is not frightening for her.
§ Positioning and Lifting Patients in bed
And don't forget that when your loved one returns home from hospital, that YOU are the one who will be doing most of the 24/7 care. Do ask the visiting Nurse or Allied Health Worker to teach you how to lift them up and make them comfortable in their bed. You need to be particularly aware of bedsores if they cannot move in bed themselves.
Have a look here so that you know how you can help them feel comfortable when you are re-positioning and lifting them in their bed.
POSITIONING AND LIFTING PATIENTS-Title2
https://www.youtube.com/watch?v=H68Sa04s_1s
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Advanced Dementia Day Respite Program
Churches of Christ Care - Community Care Gold Coast
The Advanced Dementia Day Respite Program is run from the secure unit at Tricare Labrador, in partnership with Churches of Christ Care.
This program is suitable for clients who are no longer able to attend other day respite centres due to their high care needs.
The cost is $25. per day for the care provided.
Commonwealth Carers' Respite Centre has generously funded the cost for the lunch provided by Tricare.
Transport is available if required with a fee of $7. each eay.
Please ring 07 5539 7600 if you would like to discuss this program. Our friendly staff will be happy to help you.
My Aged Care Service type - Centre based respite.
Churches of Christ Care.
18 September 2020