Diagnosing Lewy Body Dementia
https://hellocare.com.au/lewy-body-disease-hard-diagnose/
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.
Diagnosing DLB on Clinical Symptoms Alone
This article was published online in the journal Neurology on June 7, 2017. The International DLB Consortium was supported by The National Institute on Aging, National Institutes of Neurological Disorders and Stroke, the Lewy Body Dementia Association, the Lewy Body Society, Alzheimer’s Association, Acadia Pharmaceuticals, Axovant Sciences, Banner Health, GE Healthcare, and Lundbeck.
DLB also has other symptoms that “support” a diagnosis, but are not so common that they help make the diagnosis. Two new “supportive” symptoms added to this list are the loss of smell and excessive daytime sleepiness.
Diagnosing DLB Clinical Symptoms Plus Biomarkers
Members of the LBDA’s Scientific Advisory Council who were co-authors on the paper include lead author, Ian G. McKeith, plus Bradley F. Boeve, Dennis W. Dickson, Daniel Weintraub, James Galvin, John E. Duda, Tanis J. Ferman, Douglas Galasko, Jennifer G. Goldman, Kejal Kantarci, Daniel I. Kaufer, James B. Leverenz, Carol Lippa, Andrew B. Singleton, Debby Tsuang and Kenji Kosaka.
with many thanks for this such clearly set out description. Carers and family are worried enough as it is. An accurate diagnosis is Essential for their loved one's treatment. J
LBD is a multi-system disease and typically requires a comprehensive treatment approach, meaning a team of physicians from different specialties, who collaborate to provide optimum treatment of each symptom without worsening other LBD symptoms. It is important to remember that some people with LBD are extremely sensitive or may react negatively to certain medications used to treat Alzheimer’s or Parkinson’s in addition to certain over-the-counter medications.
Care and Symptom Management: https://www.lbda.org/content/treatment-options
Abbey pain scale
The Abbey Pain Scale is used for people with dementia or who cannot verbalise.
http://www.racgp.org.au/your-practice/guidelines/silverbook/tools/abbey-pain-scale/
You can help your loved one by filling this out. It will give you a greater understanding of just 'what is going on'.
The Huge Caregiver Burden when looking after someone with Lewy Body Dementia. This survey report is somewhat lengthy but gives a good description of getting an accurate diagnosis and the ongoing stresses of YOU the caregiver.
- Lewy Body - additional information for You.
and also at www.lbdcaregiversguide.com
Disease Onset, Diagnosis and Treatment Experiences:
A CONSUMER COMPANION GUIDE TO THE CLINICAL PRACTICE GUIDELINES AND PRINCIPLES OF CARE FOR PEOPLE WITH DEMENTIA:
http://sydney.edu.au/medicine/cdpc/documents/resources/consumer-companion-guide.pdf
Symptoms at Disease Onset. The most frequent early symptoms of LBD reported by family members were:
Memory problems (67 percent)
Shuffling or other walking problems (47 percent)
Lapses or fluctuations in attention or alertness (43 percent)
Hallucinations (43 percent)
Driving difficulties (42 percent)
Hand tremors (38 percent)
Depression (37 percent)
Initial Diagnosis Often Changed. In 78 percent of cases, respondents reported that LBD was not the initial diagnosis, but rather:
Alzheimer's disease, another dementia, or mild cognitive impairment (54 percent)
Parkinson's or other movement disorder (39 percent1)
Mood or psychiatric disorder (24 percent)
Discussion:
In contrast to Alzheimer's disease, significantly more LBD caregivers are women and are more often the spouse of the affected person. This may reflect that fact that LBD is slightly more common in men than women, as compared to Alzheimer's disease, which is more common in women. Caregivers experienced significant barriers in obtaining a diagnosis for their loved ones. Most saw multiple physicians over more than a year before their relative was diagnosed with LBD and more than three-quarters of persons with LBD were given a different diagnosis at first. Given the evidence that early, aggressive treatment with cholinesterase inhibitors may be even more beneficial to persons with LBD than persons with Alzheimer's disease, these barriers are especially significant. Early diagnosis also provides physicians an opportunity to minimize exposure to medications that may aggravate symptoms, such as traditional neuroleptics (medications used to treat hallucinations). It is estimated that almost 60 percent of persons with LBD may experience severe, potentially irreversible reactions to neuroleptics, which suggests traditional neuroleptics (i.e. haloperidol, fluphenazine or thioridazine) should be avoided. In rare cases, a life threatening condition called neuroleptic malignant syndrome (NMS) may also occur. This reinforces the need for an accurate diagnosis.
In addition to its role in good medical care, early diagnosis allows families and caregivers the time to plan for the expected decline. Preventive steps to improve safety in the home environment should be taken, given the tendency for recurrent falls and rapid fluctuations in attention. Families also will have time to develop a better understanding of their role in patient care, including assistance with daily activities and provision of social and cognitive stimulation.
With humble thanks to this essential Caregiver research: http://lbda.org/sites/default/files/caregiver-burden-in-lbd---released-7-12-2010.pdf
As a Carer, do read the full report. I know it's long :-) but it will help you feel not alone, and give you insights so that you may help your loved one through this.
Jocelyn
https://hellocare.com.au/lewy-body-disease-hard-diagnose/
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.
Diagnosing DLB on Clinical Symptoms Alone
This article was published online in the journal Neurology on June 7, 2017. The International DLB Consortium was supported by The National Institute on Aging, National Institutes of Neurological Disorders and Stroke, the Lewy Body Dementia Association, the Lewy Body Society, Alzheimer’s Association, Acadia Pharmaceuticals, Axovant Sciences, Banner Health, GE Healthcare, and Lundbeck.
- Dementia is required, which simply means a decline in thinking skills that interferes with everyday life. In early DLB memory may be relatively normal in comparison to Alzheimer’s disease. Instead, a person with DLB experiences problems with other cognitive skills, which may need a neuropsychologist for assessment:
- Paying attention
- Reasoning and problem solving, called executive function
- Understanding how objects relate in three-dimensional space, called visuospatial skills.
- At least two of the following clinical symptoms are required:
- Delirium-like fluctuating cognition: unpredictable changes in thinking, attention and alertness
- Repeated visual hallucinations
- REM sleep behavior disorder (which may appear long before the dementia)
- Parkinsonism, specifically slowed movements, tremor when limbs are at rest, and muscle rigidity
DLB also has other symptoms that “support” a diagnosis, but are not so common that they help make the diagnosis. Two new “supportive” symptoms added to this list are the loss of smell and excessive daytime sleepiness.
Diagnosing DLB Clinical Symptoms Plus Biomarkers
- Dementia plus one of the core clinical symptoms (fluctuating cognition hallucinations, REM sleep behavior disorder, parkinsonism)
- At least one of the following biomarker test results
- Brain scans (SPECT or PET) indicates a reduction in brain cells that produce dopamine
- MIBG myocardial scintigraphy reveals reduced communication of the cardiac nerves
- A formal sleep study confirms the presence of REM sleep behavior disorder
Members of the LBDA’s Scientific Advisory Council who were co-authors on the paper include lead author, Ian G. McKeith, plus Bradley F. Boeve, Dennis W. Dickson, Daniel Weintraub, James Galvin, John E. Duda, Tanis J. Ferman, Douglas Galasko, Jennifer G. Goldman, Kejal Kantarci, Daniel I. Kaufer, James B. Leverenz, Carol Lippa, Andrew B. Singleton, Debby Tsuang and Kenji Kosaka.
with many thanks for this such clearly set out description. Carers and family are worried enough as it is. An accurate diagnosis is Essential for their loved one's treatment. J
LBD is a multi-system disease and typically requires a comprehensive treatment approach, meaning a team of physicians from different specialties, who collaborate to provide optimum treatment of each symptom without worsening other LBD symptoms. It is important to remember that some people with LBD are extremely sensitive or may react negatively to certain medications used to treat Alzheimer’s or Parkinson’s in addition to certain over-the-counter medications.
Care and Symptom Management: https://www.lbda.org/content/treatment-options
Abbey pain scale
The Abbey Pain Scale is used for people with dementia or who cannot verbalise.
http://www.racgp.org.au/your-practice/guidelines/silverbook/tools/abbey-pain-scale/
You can help your loved one by filling this out. It will give you a greater understanding of just 'what is going on'.
The Huge Caregiver Burden when looking after someone with Lewy Body Dementia. This survey report is somewhat lengthy but gives a good description of getting an accurate diagnosis and the ongoing stresses of YOU the caregiver.
- It is Not your fault
- It is Not that you fail to care sufficiently
- It is Not something you could have foreseen
- It is Not all up to YOU - seek professional help and do look at having Care in the Home and in particular, Respite for YOU as a normal part of your caregiving duties and responsibilities.
- YOU are Not in this alone. Look to Your Team to help you manage, and Ask Questions. All the time! How else can You learn and help your loved one :-)
- Lewy Body - additional information for You.
and also at www.lbdcaregiversguide.com
Disease Onset, Diagnosis and Treatment Experiences:
A CONSUMER COMPANION GUIDE TO THE CLINICAL PRACTICE GUIDELINES AND PRINCIPLES OF CARE FOR PEOPLE WITH DEMENTIA:
http://sydney.edu.au/medicine/cdpc/documents/resources/consumer-companion-guide.pdf
Symptoms at Disease Onset. The most frequent early symptoms of LBD reported by family members were:
Memory problems (67 percent)
Shuffling or other walking problems (47 percent)
Lapses or fluctuations in attention or alertness (43 percent)
Hallucinations (43 percent)
Driving difficulties (42 percent)
Hand tremors (38 percent)
Depression (37 percent)
Initial Diagnosis Often Changed. In 78 percent of cases, respondents reported that LBD was not the initial diagnosis, but rather:
Alzheimer's disease, another dementia, or mild cognitive impairment (54 percent)
Parkinson's or other movement disorder (39 percent1)
Mood or psychiatric disorder (24 percent)
Discussion:
In contrast to Alzheimer's disease, significantly more LBD caregivers are women and are more often the spouse of the affected person. This may reflect that fact that LBD is slightly more common in men than women, as compared to Alzheimer's disease, which is more common in women. Caregivers experienced significant barriers in obtaining a diagnosis for their loved ones. Most saw multiple physicians over more than a year before their relative was diagnosed with LBD and more than three-quarters of persons with LBD were given a different diagnosis at first. Given the evidence that early, aggressive treatment with cholinesterase inhibitors may be even more beneficial to persons with LBD than persons with Alzheimer's disease, these barriers are especially significant. Early diagnosis also provides physicians an opportunity to minimize exposure to medications that may aggravate symptoms, such as traditional neuroleptics (medications used to treat hallucinations). It is estimated that almost 60 percent of persons with LBD may experience severe, potentially irreversible reactions to neuroleptics, which suggests traditional neuroleptics (i.e. haloperidol, fluphenazine or thioridazine) should be avoided. In rare cases, a life threatening condition called neuroleptic malignant syndrome (NMS) may also occur. This reinforces the need for an accurate diagnosis.
In addition to its role in good medical care, early diagnosis allows families and caregivers the time to plan for the expected decline. Preventive steps to improve safety in the home environment should be taken, given the tendency for recurrent falls and rapid fluctuations in attention. Families also will have time to develop a better understanding of their role in patient care, including assistance with daily activities and provision of social and cognitive stimulation.
With humble thanks to this essential Caregiver research: http://lbda.org/sites/default/files/caregiver-burden-in-lbd---released-7-12-2010.pdf
As a Carer, do read the full report. I know it's long :-) but it will help you feel not alone, and give you insights so that you may help your loved one through this.
Jocelyn