What is Dementia With Lewy Bodies?
Dementia with Lewy bodies (DLB) is one of the most common types of progressive dementia. The central feature of DLB is progressive cognitive decline, combined with three additional defining features:
1.Pronounced “fluctuations” in alertness and attention, such as frequent drowsiness, lethargy, lengthy periods of time spent staring into space, or disorganized speech;
2.Recurrent visual hallucinations, and
3.Parkinsonian motor symptoms, such as rigidity and the loss of spontaneous movement.
People may also suffer from depression.
The symptoms of DLB are caused by the build-up of Lewy bodies – accumulated bits of alpha-synuclein protein -- inside the nuclei of neurons in areas of the brain that control particular aspects of memory and motor control. Researchers don’t know exactly why alpha-synuclein accumulates into Lewy bodies or how Lewy bodies cause the symptoms of DLB, but they do know that alpha-synuclein accumulation is also linked to Parkinson's disease, multiple system atrophy, and several other disorders, which are referred to as the "synucleinopathies." The similarity of symptoms between DLB and Parkinson’s disease, and between DLB and Alzheimer’s disease, can often make it difficult for a doctor to make a definitive diagnosis. In addition, Lewy bodies are often also found in the brains of people with Parkinson's and Alzheimer’s diseases. These findings suggest that either DLB is related to these other causes of dementia or that an individual can have both diseases at the same time. DLB usually occurs sporadically, in people with no known family history of the disease. However, rare familial cases have occasionally been reported.
Is there any treatment?
There is no cure for DLB. Treatments are aimed at controlling the cognitive, psychiatric, and motor symptoms of the disorder. Acetylcholinesterase inhibitors, such as donepezil (Aricept) and rivastigmine (Exelon), are primarily used to treat the cognitive symptoms of DLB, but they may also be of some benefit in reducing the psychiatric and motor symptoms. Doctors tend to avoid prescribing antipsychotics for hallucinatory symptoms of DLB because of the risk that neuroleptic sensitivity could worsen the motor symptoms. Some individuals with DLB may benefit from the use of levodopa for their rigidity and loss of spontaneous movement.
What is the prognosis?
Like Alzheimer’s disease and Parkinson’s disease, DLB is a neurodegenerative disorder that results in progressive intellectual and functional deterioration. There are no known therapies to stop or slow the progression of DLB. Average survival after the time of diagnosis is similar to that in Alzheimer’s disease, about 8 years, with progressively increasing disability.
What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS) conducts research related to DLB in laboratories at the NIH and also supports additional research through grants to major medical institutions across the country. Much of this research focuses on searching for the genetic roots of DLB, exploring the molecular mechanisms of alpha-synuclein accumulation, and discovering how Lewy bodies cause the particular symptoms of DLB and the other synucleinopathies. The goal of NINDS research is to find better ways to prevent, treat, and ultimately cure disorders such as DLB.
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Friday, December 10, 2010
Monday, December 6, 2010
My blog
I will be posting articles of interest to caregivers in addition to my own. I would appreciate your feedback on this decision. I'll also post some excerpts from my second book, untitled as yet. Comments on any or all entries is appreciated.
FTL Dementia update from Dementia Weekly
Frontotemporal dementias are a set of devastating, progressive diseases. They attack the parts of the brain responsible for judgment, empathy, and social behavior. People with FTD often develop personality changes, make ruinous financial decisions, become sexually inappropriate, or engage in compulsive behavior. Some patients with AD exhibit some of those behaviors, too; however, with FTDs they are front and center. Some forms of FTD rob people of normal speech, while others impair movement, similar to Parkinson’s disease and amyotrophic lateral sclerosis. FTD typically strikes at younger ages than does AD, often in a person’s late forties or fifties. It involves less memory loss than AD, but much worse behavior problems. Patients, in early stages of FTD, often seem indifferent to what would be a mortifying situation for a healthy person.
The disease is particularly devastating to families, said Susan Dickinson, who heads the Association for Frontotemporal Dementias, because it often goes unrecognized or misdiagnosed. Families, therefore, have no recourse if a spouse with FTD blows all his or her money on a sports car, or makes advances to a neighbor, since the spouse is not recognized as ill. Friends may withdraw because of the rude or disturbing behavior of the person with FTD. “Living with these diseases is incredibly isolating,” Dickinson said. “These families are losing their loved ones, and nobody will listen. We have a lot of people who get divorced.” Earlier diagnosis of the disease would help families to understand and cope with what is happening, Dickinson said. “As soon as there is a medical diagnosis, a lot of people get right back together to care for their spouse.”
FTDs are fairly rare. Scientists estimate as many as 20,000 Americans suffer from them, said David Knopman of the Mayo Clinic in Rochester, Minnesota, reviewing the findings of several recent papers. This is similar to the number of Americans with amyotrophic lateral sclerosis, but about 200-fold less than people with Alzheimer’s disease. FTD most often hits between 45 and 64 years old, and people typically survive six to nine years after diagnosis, Knopman said, similar to Alzheimer’s.
Frontotemporal dementia is an umbrella term that encompasses a large number of clinical syndromes and distinct pathologies. This includes a confusing lexicon of terms such as progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), primary progressive aphasia (PPA), behavioral variant FTD (bvFTD), and Pick’s disease. The distinctions among these syndromes are often hazy, and diagnosis can only be reliably made after death by examining brain tissue changes. Until quite recently, the fundamental biology at the root of many of these syndromes was a mystery.
The disease is particularly devastating to families, said Susan Dickinson, who heads the Association for Frontotemporal Dementias, because it often goes unrecognized or misdiagnosed. Families, therefore, have no recourse if a spouse with FTD blows all his or her money on a sports car, or makes advances to a neighbor, since the spouse is not recognized as ill. Friends may withdraw because of the rude or disturbing behavior of the person with FTD. “Living with these diseases is incredibly isolating,” Dickinson said. “These families are losing their loved ones, and nobody will listen. We have a lot of people who get divorced.” Earlier diagnosis of the disease would help families to understand and cope with what is happening, Dickinson said. “As soon as there is a medical diagnosis, a lot of people get right back together to care for their spouse.”
FTDs are fairly rare. Scientists estimate as many as 20,000 Americans suffer from them, said David Knopman of the Mayo Clinic in Rochester, Minnesota, reviewing the findings of several recent papers. This is similar to the number of Americans with amyotrophic lateral sclerosis, but about 200-fold less than people with Alzheimer’s disease. FTD most often hits between 45 and 64 years old, and people typically survive six to nine years after diagnosis, Knopman said, similar to Alzheimer’s.
Frontotemporal dementia is an umbrella term that encompasses a large number of clinical syndromes and distinct pathologies. This includes a confusing lexicon of terms such as progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), primary progressive aphasia (PPA), behavioral variant FTD (bvFTD), and Pick’s disease. The distinctions among these syndromes are often hazy, and diagnosis can only be reliably made after death by examining brain tissue changes. Until quite recently, the fundamental biology at the root of many of these syndromes was a mystery.
On Guardian and Conservator Responsibilities
Attorney Leanna Hamill provides estate planning and related legal services to clients of all ages, with a focus on the needs of older individuals and their families.
160 Old Derby St., Suite 456
Hingham, Ma 02043
Phone: 781-749-2284 Fax: 866-573-6429
Leanna@HamillLawOffice.com
Responsibilities of a Guardian & Conservator
Written on December 6, 2010 in Guardianship
Have you thought about pursuing guardianship or conservatorship over an adult family member who you believe can no longer handle their affairs? A guardianship is a legal relationship created by a court between a guardian and her ward, usually an incapacitated adult. The guardian has a legal right and duty to care for the ward. A conservatorship is a like a guardianship but refers only to property.
After you are appointed by the Court, you have a lot of responsibilities to properly carry out your duties. Here are some of the ongoing responsibilities of a guardian and conservator:
•Filing a report with the Court at 60 days and annually outlining your plans for the ward, their care, and their property,
•Filing a yearly report with the Court outlining the ward’s living situation, medical condition, how often you’ve visited them, what services they are receiving and related issues.
•Caring for the ward – making health care decisions, living decisions and decisions about how to manage their property for their benefit,
•Involving the ward as much as possible taking into account their condition and circumstances,
•Filing Roger’s Monitor reports annually, if you are also appointed in that capacity,
•In the case of a Conservatorship, fileing annual accountings showing what has occured over the last year with the property you are managing,
•Responding to any requests from the Court for more frequent recording.
A guardian or conservator is always subject to the oversight of the Court and can be penalized for failing to properly account for funds and monitor their ward.
(The term “ward” is used here for convenience. The legal term for someone under a guardianship is “incapacitated person” and for someone under a conservatorship is “protected person.”)
________
Estate Planning, Probate and Trusts involve complex areas of law. Individual circumstances must be considered before any advice can be given. The general information above is not to be construed as legal advice, which can only be given after consideration of the unique facts of each matter. Please seek the advice or counsel of your attorney, financial advisor or CPA as it may be appropriate.
160 Old Derby St., Suite 456
Hingham, Ma 02043
Phone: 781-749-2284 Fax: 866-573-6429
Leanna@HamillLawOffice.com
Responsibilities of a Guardian & Conservator
Written on December 6, 2010 in Guardianship
Have you thought about pursuing guardianship or conservatorship over an adult family member who you believe can no longer handle their affairs? A guardianship is a legal relationship created by a court between a guardian and her ward, usually an incapacitated adult. The guardian has a legal right and duty to care for the ward. A conservatorship is a like a guardianship but refers only to property.
After you are appointed by the Court, you have a lot of responsibilities to properly carry out your duties. Here are some of the ongoing responsibilities of a guardian and conservator:
•Filing a report with the Court at 60 days and annually outlining your plans for the ward, their care, and their property,
•Filing a yearly report with the Court outlining the ward’s living situation, medical condition, how often you’ve visited them, what services they are receiving and related issues.
•Caring for the ward – making health care decisions, living decisions and decisions about how to manage their property for their benefit,
•Involving the ward as much as possible taking into account their condition and circumstances,
•Filing Roger’s Monitor reports annually, if you are also appointed in that capacity,
•In the case of a Conservatorship, fileing annual accountings showing what has occured over the last year with the property you are managing,
•Responding to any requests from the Court for more frequent recording.
A guardian or conservator is always subject to the oversight of the Court and can be penalized for failing to properly account for funds and monitor their ward.
(The term “ward” is used here for convenience. The legal term for someone under a guardianship is “incapacitated person” and for someone under a conservatorship is “protected person.”)
________
Estate Planning, Probate and Trusts involve complex areas of law. Individual circumstances must be considered before any advice can be given. The general information above is not to be construed as legal advice, which can only be given after consideration of the unique facts of each matter. Please seek the advice or counsel of your attorney, financial advisor or CPA as it may be appropriate.
Friday, December 3, 2010
From Geriatrics@brookdaleseniorliving.com
MEMANTINE DISCONTINUATION AND THE HEALTH STATUS OF NURSING HOME RESIDENTS WITH ALZHEIMER'S DISEASE. Fillit HM, Hofbauer RK, et al: Journal of the American Medical Directors Association, 2010; 11 (November) 636-644
OBJECTIVE: To estimate the effect of memantine (Namenda®) discontinuation for a nonmedical reason (e.g., formulary restriction or family decision) on the health status of nursing home (NH) residents with Alzheimer's disease (AD).
DESIGN: Retrospective chart review.
RESULTS: Compared with continuous treatment, memantine discontinuation was associated with a significant increase in the Total AD Symptom Change Score (i.e., worsening) in all comparison pairs. The symptoms showing greatest worsening aggregated into two factors: cognition and mood.
CONCLUSIONS: Memantine discontinuation in NH residents with AD may be associated with declining health status, and should be considered with care. A randomized, placebo-controlled trial of treatment discontinuation is merited.
KEVIN’S COMMENTS: Memantine is indicated for the treatment of moderate to severe Alzheimer’s disease. Several clinical studies have demonstrated in such persons a favorable effect on cognition, behaviors such as agitation and aggression, and activities of daily living. However, we can expect that nonmedical reasons for discontinuing medications in nursing home residents will escalate as budgetary concerns and perceived lack of benefit surface. This study showed that sudden withdrawal of memantine in persons with moderate to advanced Alzheimer’s disease resulted in a decline in overall health status within 2-3 months, compared with continued memantine treatment.
OBJECTIVE: To estimate the effect of memantine (Namenda®) discontinuation for a nonmedical reason (e.g., formulary restriction or family decision) on the health status of nursing home (NH) residents with Alzheimer's disease (AD).
DESIGN: Retrospective chart review.
RESULTS: Compared with continuous treatment, memantine discontinuation was associated with a significant increase in the Total AD Symptom Change Score (i.e., worsening) in all comparison pairs. The symptoms showing greatest worsening aggregated into two factors: cognition and mood.
CONCLUSIONS: Memantine discontinuation in NH residents with AD may be associated with declining health status, and should be considered with care. A randomized, placebo-controlled trial of treatment discontinuation is merited.
KEVIN’S COMMENTS: Memantine is indicated for the treatment of moderate to severe Alzheimer’s disease. Several clinical studies have demonstrated in such persons a favorable effect on cognition, behaviors such as agitation and aggression, and activities of daily living. However, we can expect that nonmedical reasons for discontinuing medications in nursing home residents will escalate as budgetary concerns and perceived lack of benefit surface. This study showed that sudden withdrawal of memantine in persons with moderate to advanced Alzheimer’s disease resulted in a decline in overall health status within 2-3 months, compared with continued memantine treatment.
Prayer heals from Brookdale newsletter
SISTERS IN MOTION: A RANDOMIZED CONTROLLED TRIAL OF A FAITH-BASED PHYSICAL ACTIVITY INTERVENTION. Duru OK, Sarkisian CA, et al: Journal of the American Geriatrics Society, 2010:58 (October) 1863-1869.
BACKGROUND: We know that exercise benefits our health, but an effective exercise and health improvement program can be difficult to find. Elderly African-American women were the focus of this study because only a few of these programs have been utilized for this population.
OBJECTIVE: To show that a faith-based exercise intervention program has both utility and success in improving outcomes for elderly African-American women.
DESIGN: Randomized controlled trial.
METHODS: All of the participants were African-American women, who, at the beginning of the study, could not walk without a walker and walked less than 30minutes 3 times a week. After enrolling, baseline blood pressures, pain scores, and weights were recorded. Participants were given a pedometer to record the number of steps walked. Two groups were created, the intervention group and the control group. Both groups received 45 minutes of exercise as well as weekly lectures, but only the intervention group participated in the faith-based curriculum, which included 8 weeks of scripture reading, group prayer, weekly goal setting, teaching on overcoming barriers, and a prize for the most steps walked for each week. The women were followed monthly after the first 8 weeks.
PARTICIPANTS: 62 participants, 60 years of age and from3 different Los Angeles churches, were included.
RESULTS: At the 6-month follow-up point, the intervention group had increased their walking activity by 3 miles per week compared to the control group. They also had a significant decrease in their systolic blood pressure.
CONCLUSIONS: A faith-based exercise program that utilizes goal setting and teaches strategies to overcome barriers to physical activity improved physical activity and blood pressure control in elderly African-American women.
KEVIN’S COMMENTS: Wellness is not just the health of our bodies, but the health of our minds, hearts, and souls as well. This study demonstrated that spiritual support and cognitive stimulation, as well as incentives to enhance motivation, helped overcome barriers to participation and resulted in increased physical activity levels. Another benefit was a reduction in blood pressure. This study reinforces the health benefits of programs that support multiple dimensions of wellness.
BACKGROUND: We know that exercise benefits our health, but an effective exercise and health improvement program can be difficult to find. Elderly African-American women were the focus of this study because only a few of these programs have been utilized for this population.
OBJECTIVE: To show that a faith-based exercise intervention program has both utility and success in improving outcomes for elderly African-American women.
DESIGN: Randomized controlled trial.
METHODS: All of the participants were African-American women, who, at the beginning of the study, could not walk without a walker and walked less than 30minutes 3 times a week. After enrolling, baseline blood pressures, pain scores, and weights were recorded. Participants were given a pedometer to record the number of steps walked. Two groups were created, the intervention group and the control group. Both groups received 45 minutes of exercise as well as weekly lectures, but only the intervention group participated in the faith-based curriculum, which included 8 weeks of scripture reading, group prayer, weekly goal setting, teaching on overcoming barriers, and a prize for the most steps walked for each week. The women were followed monthly after the first 8 weeks.
PARTICIPANTS: 62 participants, 60 years of age and from3 different Los Angeles churches, were included.
RESULTS: At the 6-month follow-up point, the intervention group had increased their walking activity by 3 miles per week compared to the control group. They also had a significant decrease in their systolic blood pressure.
CONCLUSIONS: A faith-based exercise program that utilizes goal setting and teaches strategies to overcome barriers to physical activity improved physical activity and blood pressure control in elderly African-American women.
KEVIN’S COMMENTS: Wellness is not just the health of our bodies, but the health of our minds, hearts, and souls as well. This study demonstrated that spiritual support and cognitive stimulation, as well as incentives to enhance motivation, helped overcome barriers to participation and resulted in increased physical activity levels. Another benefit was a reduction in blood pressure. This study reinforces the health benefits of programs that support multiple dimensions of wellness.
My column for November in SS Senior News
Hello God, it’s Me; I need You
In a research poll asking caregivers where they get their support, sixty-six percent answered “God’. The remaining thirty-three percent said friends, books, groups and professionals. Being a caregiver is lonely and laden with emotion. A diagnosis of Alzheimer’s is a life-changing event for families, one that continues to change life. Emotions emerge that surprise, even shame the person feeling them. Grief and sorrow over the losses the person sees in their diagnosed family member may be more easily managed than the emotions of anger, resentment, persistent impatience, and thoughts of hatred. These emotions feel unnatural and are not usually revealed to friends or family members. The caregiver carries them alone, unless they feel the presence of God.
I often ask caregivers if their faith brings them comfort through the caregiving journey. If they answer ‘yes’ I know the emotional impact will be lessened. If their religious practices like prayer and worship are an integral part of life and bring comfort and meaning to life, the person feels less alone.
Old Testament verses in Proverbs 3: 3-6 reads, ‘Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.’ The person of faith looks to God to hear their concerns, to continue to love them and forgive their shameful responses to caregiving. Some pray for patience to endure the challenges caregiving brings. Others are comforted believing God will guide them and protect them. God is the best care partner a caregiver can want.
In a research poll asking caregivers where they get their support, sixty-six percent answered “God’. The remaining thirty-three percent said friends, books, groups and professionals. Being a caregiver is lonely and laden with emotion. A diagnosis of Alzheimer’s is a life-changing event for families, one that continues to change life. Emotions emerge that surprise, even shame the person feeling them. Grief and sorrow over the losses the person sees in their diagnosed family member may be more easily managed than the emotions of anger, resentment, persistent impatience, and thoughts of hatred. These emotions feel unnatural and are not usually revealed to friends or family members. The caregiver carries them alone, unless they feel the presence of God.
I often ask caregivers if their faith brings them comfort through the caregiving journey. If they answer ‘yes’ I know the emotional impact will be lessened. If their religious practices like prayer and worship are an integral part of life and bring comfort and meaning to life, the person feels less alone.
Old Testament verses in Proverbs 3: 3-6 reads, ‘Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.’ The person of faith looks to God to hear their concerns, to continue to love them and forgive their shameful responses to caregiving. Some pray for patience to endure the challenges caregiving brings. Others are comforted believing God will guide them and protect them. God is the best care partner a caregiver can want.
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