Exercise Program for Dementia

Exercise may benefit the Alzheimer’s patient by improving both symptoms and quality of life. For the same level of brain deterioration, physically active people exhibit higher levels of cognitive functioning than sedentary people. It is thought that physically active people have a ‘cognitive reserve’ that is used when other areas of the brain are damaged.

An exercise routine may decrease the severity of symptoms of dementia as well as lead to increased mobility and independence. An exercise routine for the elderly should be composed of four components:

  1. Aerobic exercise
  2. Strength training
  3. Balance training
  4. Flexibility exercises

All training programs should be entered into gradually and only after checking with his/her physician.

An aerobic training program, improves cardiovascular health as well as brain health. It is associated with decreased risk of stroke and the related dementia. Physical activity may also decrease the beta-amyloid proteins leading to decreased amyloid plaque and decreased disruption between neurons. For maximum health benefit, 30-minutes of aerobic activity should be performed most days of the week. This need not be intense and the participant should be able to talk throughout. The 30-minutes can be split into smaller, 10-minutes segments if that is more desirable. When beginning a training program, you can start with intervals as short as 5-minutes and progress.

Strength training programs combat the loss of muscle mass associated with aging. It can improve independence, mobility, and balance. Daily tasks (e.g. getting out of bed, getting out of chairs, climbing stairs) become easier with increased strength. Ideally, 10-15 repetitions of 8-10 exercises should be performed 2 or 3 times per week. The resistance should be great enough that each set of repetitions is difficult to complete. Resistance may be applied with bands or tubing, light weights, or even cans of food. If the sets are completed easily, the resistance should be increased.

Balance exercises can be performed almost anywhere. Balance is position specific so both standing balance and sitting balance should be targeted. With improved standing balance, there is decreased risk of falls and fractures. Standing on one-leg, with or without assistance, will help improve standing balance. Sitting balance can be improved by sitting on a chair, couch, or balance ball, with the lower back straight, and lifting an arm or a leg into a different position. Also, chair stands can be included. The more unstable the sitting surface is, the more difficult the exercise will be. More advanced exercises such as backwards walking and leaning can be gradually added into the program.

Flexibility exercises are best performed with the aid of a personal trainer, training partner, or care giver. Flexibility exercises can improve back pain and shoulder pain and increase range of motion.

There are certainly challenges in starting and keeping a patient in an exercise program. However, older adults are among the most willing to begin exercise programs as they are more aware of health issues. With dementia patients, there may be additional challenges as the disease progresses. However, there are many techniques that may help combat challenges that arise. The improvement in functioning and quality of life should make the challenges worthwhile.

Published research related to this topic:
American College of Sports Medicine Position Stand. Exercise and Physical Activity for Older Adults.
Mazzeo, R., Cavanaugh, P., Evans, W. et al.
Med. Sci. Sports Exerc. 1998: 30(6): 992-1008.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9624662&query_hl=25

Exercise and activity level in Alzheimer’s disease : A potential treatment focus.
Teri L., McCurry, S., Buchner, D., et al. J.
Rehab. Research and Development. 1998: 35(4): 411-419
http://www.vard.org/jour/98/35/4/teri.pdf

 

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Hearing Loss Linked to Cognitive Decline, Impairment

Medscape News
Jan 23, 2013

written by Pauline Anderson

Older adults with hearing loss have a rate of cognitive decline that is up to 40% faster than the rate in those with normal hearing, according to results of a new study. Those with hearing loss also appear to have a greater risk for cognitive impairment.

“I would argue going forward for next 30 or 40 years that from a public health perspective, there’s nothing more important than cognitive decline and dementia as the population ages,” said lead author Frank R. Lin, MD, PhD, assistant professor, otolaryngology, geriatrics, and epidemiology, Johns Hopkins University, Baltimore, Maryland.

“So from a big picture point of view, identifying factors that are associated with cognitive decline and dementia are important, in particular those factors that are potentially modifiable.”

Although the study did not find a significant association between hearing aid use and rate of cognitive decline, Dr. Lin is convinced that addressing hearing loss could have an impact greater than just improving quality of life.

The study was published online January 21 in JAMA Internal Medicine, formerly known as Archives of Internal Medicine.

Help protect yourself and Medicare from fraud and identity theft

Report Fraud

To help protect yourself and Medicare from fraud and identity theft you should report it.Whenever you get a payment notice from Medicare review it for errors. The notice shows what Medicare was billed for, what Medicare paid, and what (if anything) you owe. Make sure Medicare was not billed for health care services, medical supplies, or equipment you did not get.

Before you contact your health care provider, Medicare, or the Inspector General’s hotline, carefully review the facts, and have the following ready:

  • The provider’s name and any identifying number you may have.
  • The service or item information you are questioning.
  • The date the service or item was supposedly given or delivered.
  • The payment amount approved and paid by Medicare.
  • The date on your Medicare Summary Notice.
  • Your name and Medicare number (as listed on your Medicare card).
  • The reason you think Medicare should not have paid.
  • Any other information you have showing why Medicare should not have paid.

Report Errors

HHS Office of Inspector General

Phone

1-800-HHS-TIPS (1-800-447-8477)

TTY: 1-800-377-4950

Internet

Report Fraud Online

Senior Medicare Patrol Program

Email

hhstips@oig.hhs.gov

Mail

HHS Tips Hotline
PO Box 23489
Washington, DC 20026-3489

Centers for Medicare and Medicaid

Phone

1-800-Medicare

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Beneficiary Contact Center
PO Box 39
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UPDATE on Dementia with Lewy Bodies

  

 

©Family Caregiver Alliance

  

Fact Sheet : Dementia with Lewy Bodies

  

 

Definition

Dementia with Lewy Bodies (DLB) is a progressive degenerative disease or syndrome of the brain. It shares symptoms—and sometimes overlaps—with several diseases, especially Alzheimer’s and Parkinson’s.

People who develop DLB have behavioral and memory symptoms of dementia like those of Alzheimer’s Disease and, to varying extents, the physical, motor system symptoms seen in Parkinson’s Disease. However, the mental symptoms of a person with DLB might fluctuate frequently, motor symptoms are milder than for Parkinson’s, and DLB patients usually have vivid visual hallucinations.

 

Facts

Dementia with Lewy Body (DLB) is also called “Lewy Body Dementia” (LBD), “Diffuse Lewy Body Disease”, “Lewy Body Disease”, “Cortical Lewy Body Disease”, “Lewy Body Variant of Alzheimer’s Disease” or “Parkinson’s Disease Dementia.” It is the second most common dementia, accounting for 20% of those with dementia (Alzheimer’s Disease is first). Dementia is a gradual, progressive decline in mental ability (cognition) that affects memory, thinking processes, behavior and physical activity. In addition to these mental symptoms, persons with DLB experience physical symptoms of parkinsonism, including mild tremor, muscle stiffness and movement problems. Strong visual hallucinations also occur.

DLB is named after smooth round protein lumps (alpha-synuclein) called Lewy bodies, that are found in the nerve cells of the affected parts of the brain. These “abnormal protein structures” were first described in 1912 by Frederich Heinrich Lewy, M.D., a contemporary of Alois Alzheimer who first identified the more common form of dementia that bears his name.

Lewy bodies are found throughout the outer layer of the brain (the cerebral cortex) and deep inside the midbrain and brainstem. They are often found in those diagnosed with Alzheimer’s, Parkinson’s, Down syndrome and other disorders.

The cause of DLB is unknown and no specific risk factors are identified. Cases have appeared among families but there does not seem to be a strong tendency for inheriting the disease. Genetic research may reveal more information about causes and risk in the future. It usually occurs in older adults between 50-85 years old and slightly more men than women have the disease.

 

Symptoms

Initial symptoms of DLB usually are similar to those of Alzheimer’s or Vascular Dementia and are cognitive in nature, such as acute confusion, loss of memory, and poor judgment. Other patients may first show the neuromuscular symptoms of parkinsonism—loss of spontaneous movement, rigidity (muscles feel stiff and resist movement), and shuffling gait, while still others may have visual hallucinations as the first symptom. Patients may also suffer from delusions or depression.

Key symptoms are:

  • Problems with recent memory such as forgetting recent events.
  • Brief episodes of unexplained confusion and other behavioral or cognitive problems. The individual may become disoriented to the time or location where he or she is, have trouble with speech, have difficulty finding words or following a conversation, experience visuospatial difficulty (for example, finding one’s way), and have problems in thinking such as inattention, mental inflexibility, indecisiveness, lack of judgment, lack of initiative and loss of insight.
  • Fluctuation in the occurrence of cognitive symptoms from moment to moment, hour to hour, day to day or week to week. For example, the person may converse normally one day and be mute and unable to speak the next day. There are also fluctuations in attention, alertness and wakefulness.
  • Well defined, vivid, recurrent visual hallucinations. These hallucinations are well formed and detailed. In DLB’s early stage, the person may even acknowledge and describe the hallucinations. They are generally benign and patients are not scared by them. Hallucinations may also be auditory (hearing sounds), olfactory (smelling or tasting something) or tactile (feeling or touching something that is not there).
  • Movement problems of parkinsonism, sometimes referred to as “extrapyramidal” signs. These symptoms often seem to start spontaneously and may include flexed posture, shuffling gait, muscle jerks or twitches, reduced arm swing, loss of dexterity, limb stiffness, a tendency to fall, balance problems, bradykinesia (slowness of movement), tremor, shakiness, and lack of facial expression.
  • Rapid Eye Movement Sleep Behavior Disorder. This is characterized by vivid dreaming, talking in one’s sleep, and excessive movement while asleep, including occasionally hitting a bed partner. The result may be excessive daytime drowsiness and this symptom may appear years before DLB is diagnosed. About 50% of patients have this symptom.

Movement and motor problems occur in later stages for 70% of persons with DLB. But for 30% of DLB patients, and more commonly those that are older, Parkinson’s symptoms occur first, before dementia symptoms. In these individuals, cognitive decline tends to start with depression or mild forgetfulness.

 

Testing and Diagnosis

Dementia with Lewy bodies is difficult to diagnose. Not only does it resemble other dementias, it overlaps with Alzheimer’s, Parkinson’s and other disorders which may result in it being difficult to rule out or exclude. Because no single test exists to diagnose DLB, a variety of medical, neurological and neuropsychological tests are used to pinpoint it and its possible overlap with other illnesses. A definitive diagnosis can only be made by an autopsy at death. There are no medications currently approved to specifically treat DLB.

Although Lewy bodies are found in brains of patients with other diseases, and because testing will involve several approaches, it is useful to understand what happens to the brain of a person with DLB. Three significant changes or pathological features are seen in brains afflicted by DLB:

  • The brain’s cerebral cortex (outer layers of the brain) degenerates or shrinks. This can affect reasoning and complex thinking, understanding personality, movement, speech and language, sensory input and visual perceptions of space. Degeneration also occurs in the limbic cortex at the center of the brain, which plays a major role in emotions and behavior. Lewy bodies form throughout these degenerating cortical areas.
  • Nerve cells die in the midbrain, especially in an area that also degenerates in Parkinson’s disease, the substantia nigra, located in the brainstem. These cells are involved in making the neurotransmitter (brain messenger) dopamine. Lewy bodies are found in the nerve cells that remain. The midbrain is involved in memory formation and learning, attention, and psychomotor (muscular movement) skills.
  • Lesions called Lewy neuritis that affect nerve cell function are found in DLB brains, especially in the hippocampus, an area of the brain essential for forming new memories.

None of the symptoms of Dementia with Lewy Bodies is specific only to DLB. To address this problem, an international group of researchers and clinicians developed a set of diagnostic criteria in 1995, called the Consensus Guidelines that can reliably point to DLB:

Must be present:

  • Progressive cognitive decline (decrease in thinking ability) that interferes with normal social or occupational activities. Memory problems do not necessarily occur in the early period but will occur as DLB progresses. Attention, language, understanding and reasoning, ability to do arithmetic, logical thinking and perceptions of space and time will be impaired.

Two of the following are present (one also indicates possibility of DLB):

  • Fluctuating cognition and mental problems, vary during the day, especially attention and alertness.
  • Visual hallucinations, detailed and well-formed visions occur and recur.
  • Parkinsonism: motor related and movement problems appear.

A DLB diagnosis is even more likely if the patient also experiences repeated falls, fainting, brief loss of consciousness, delusions, or is sensitive to neuroleptic medications that are given to control hallucinations and other psychiatric symptoms.

Finally, the timing of symptoms is a reliable clue: if both mental and motor symptoms appear within one year of each other, DLB is more likely the cause. Signs of stroke or vascular dementia usually negate the likelihood of DLB.

Testing is usually done to rule out other possible causes of dementia. Brain imaging (CT scan or MR imaging) can detect brain shrinkage and help rule out stroke, fluid on the brain (normal pressure hydrocephalus), or subdural hematoma. Blood and other tests might show vitamin B 12 deficiency, thyroid problems, syphilis, HIV, or vascular disease. Depression is also a common cause of dementia-like symptoms. Additional tests can include an electroencephalogram (EEG) or spinal tap. Scans using SPECT or PET technology have shown promise in detecting differences between DLB and Alzheimer’s disease.

 

Alzheimer’s and Parkinson’s: Differences and Overlap with DLB

DLB’s similarity to Alzheimer’s and Parkinson’s diseases and the fact that Lewy bodies are often found in the brains of patients with these diseases means that clinicians must pay close attention to the factors that distinguish DLB:

  • Memory and other cognitive problems occur in both DLB and Alzheimer’s. However, in DLB they fluctuate frequently.
  • DLB patients experience more depression than do Alzheimer’s patients.
  • Hallucinations are experienced by Alzheimer’s patients in late stages, and by Parkinson’s patients who take medications to improve movement and tremor. In DLB, hallucinations occur in early stages, and they are frequent, vivid and detailed.
  • Neuroleptic drugs (sometimes called psychotropic drugs) prescribed to lessen the so-called psychiatric symptoms of dementia, such as hallucinations, agitation or restlessness will induce Parkinson’s in some DLB patients.
  • Life expectancy is slightly shorter for DLB than for Alzheimer’s patients.
  • At autopsy the brains of DLB patients have senile plaques, a hallmark of Alzheimer’s. Another Alzheimer’s feature, neurofibrillary tangles, are absent or found in fewer numbers and are concentrated in the neocortex. Other Alzheimer’s features—regional neuronal loss, spongiform change and synapse loss, neurochemical abnormalities and neurotransmitter deficits—are also seen. However, DLB-afflicted brains are less damaged than are Alzheimer’s brains.
  • In DLB movement problems are spontaneous; the symptoms begin suddenly.
  • Tremor is less pronounced in DLB than in Parkinson’s. Also, DLB patients respond less dramatically to drugs such as Levodopa that are used to treat Parkinson’s. Nerve cell loss in the subtantia nigra is not as severe in DLB. Both DLB and Parkinson’s patients may sometimes experience fainting and wide alterations in blood pressure. Some Parkinson’s patients develop dementia in later stages. Dementia is usually the presenting symptom in DLB.
  • Parkinson’s patients lose the neurotransmitter dopamine; Alzheimer’s patients lose the neurotransmitter acetylcholine. DLB patients lose both.
  • In DLB, Alzheimer-like and Parkinson-like symptoms appear within one year of each other.

Despite these differences, a diagnosis of Dementia with Lewy Bodies does not preclude a positive diagnosis of Alzheimer’s, Parkinson’s or other diseases common in older age.

 

Duration and Treatment

With an average lifespan after onset of 5 to 7 years, the progress of Dementia with Lewy Bodies is relentless; however, the rate of decline varies with each person. DLB does not follow a pattern of stages as is seen in some other dementias. Death usually occurs from pneumonia or other illness. There is neither cure nor specific treatment to arrest the course of the disease.

Caution must be used in treating a person with DLB. Medications must be monitored closely for proper balance because some patients are adversely affected by some drugs. Neuroleptic (tranquilizing) anti-psychotic medications such as haloperidol (Haldol) or thioridazine (Mellaril), as well as benzodiazepines (Valium, Ativan) and anti-histamines can cause extreme adverse reactions in DLB patients. Side effects include motor related symptoms, catatonia (non-responsiveness), loss of cognitive function and/or development of muscle rigidity. These medications are sometimes used in Alzheimer’s patients to help with hallucinations and behavioral symptoms, but should not be used in patients with DLB. Levodopa may be given to treat the parkinsonism, however, it may increase the hallucinations of DLB patients and aggravate other symptoms, such as cognitive functioning. It is less effective in treating tremor in DLB patients than in Parkinson’s patients. Aricept or other cholinesterase inhibitors are given to treat the hallucinations. Some anti-depressants have shown positive results, while others are counter indicated.

When considering surgery, families should meet with the anesthesiologist to discuss possible side effects of anesthesia, as DLB patients are prone to delusions and a decline in motor functioning after anesthesia.

 

Caregiving and DLB

DLB patients can live at home with frequent reassessment and careful monitoring and supervision. Caregivers must watch the patient closely because of the tendency for them to fall or lose consciousness. Particular care should be taken when a patient is standing up from a chair or getting out of bed, as blood pressure can drop, causing the patient to lose his or her balance. Dementia prevents patients from learning new actions that might help them overcome movement problems, such as learning to use a walker. They may need more assistance some days than others, and can be reassured by a caregiver’s help in turning attention away from the hallucinations.

Caregivers must learn to navigate both skills in dealing with cognitive, behavioral and motor disabilities. Attending support groups and learning skills in how to communicate with someone with dementia as well as learning skills in helping someone with a motor disorder will reduce caregiver stress and frustration.

Caregivers can turn to a California Caregiver Resource Center for assistance and to a qualified diagnostic center for initial diagnosis and follow up. In other states, resources can be found through local and state offices on aging and health such as your Area Agency on Aging or the Alzheimer’s Association in your area.

 

Credits and References

Lewy Body Dementia Association. P.O. Box 451429. Atlanta, GA 31145. (404) 422-5434. www.lbda.org

Riding the Roller Coaster with Lewy Body Dementia by Helen Whitworth, available at lbd@whitworth2.com, or (480) 981-1117.

LewyNet, The University of Nottingham, Division of Pathology, University Park, Nottingham, England NG7 2RD. Telephone +44 115 9515151. Web site: http://www.ccc.nottingham.ac.uk/~mpzjlowe/lewy/lewyhome.html.

“Dementia with Lewy Bodies: A Distinct Non-Alzheimer Dementia Syndrome?” by Paul G. Ince, Elaine K. Perry, and Chris M. Morris, Brain Pathology, April, 1998. (Available with extensive bibliographies at LewyNet web site.)

“Similarities to Alzheimer’s and Parkinson’s Make Lewy Body Dementia Difficult to Recognize and Challenging to Treat,” John Douglas French Center for Alzheimer’s Disease Journal, 1998/1999.

Parkinson’s Disease UPDATE, a monthly newsletter, Medical Publishing Company, P. O. Box 450, Huntingdon Valley, PA 19006. Issue #10, 2000.

“Dementia with Lewy Bodies” by Ian G. McKeith, M.D., FRCPsych., High Notes, News from the John Douglas French Alzheimer’s Foundation, Fall, 1996.

“Consensus guidelines for the clinical and pathological diagnosis of dementia with Lewy bodies (DLB): report of the consortium on DLB International Workshop,” by I. G. McKeith, D. Galasko, K. Kosaka, E. K. Perry, et al, 1996. Neurology, 47:1113-24.

Dementia with Lewy Bodies by Robert H. Perry, Ian G. McKeith, and Elaine K. Perry (editors), Forward by Jeffrey L. Cummings, 1996. Cambridge University Press, Cambridge.

 

Other References

Ala, T. A., Yang, K. H., Sung, J. H., Frey, W. H., 1997. Hallucinations and signs of parkinsonism help distinguish patients with dementia and cortical Lewy bodies from patients with Alzheimer’s disease at presentation: a clinicopathological study. Journal of Neurology, Neurosurgery and Psychiatry, 62:16-21.

Dickson, D. W., Ruan, D., Crystal, H., Mark, M. H., et al, 1991. Hippocampal degeneration differentiates diffuse Lewy body disease (DLBD) from Alzheimer’s disease. Neurology, 41:1402-9.

Galasko, D., Katzman, R., Salmon, D. P., Hansen, L., 1996. Clinical features and neuropathological findings in Lewy body dementias. Brain Cognition, 31:166-75.

Graham, C., Ballard, C., Saad, K., 1997. Variables which distinguish patients fulfilling clinical criteria for dementia with Lewy bodies from those with dementia, Alzheimer’s disease. International Journal of Geriatric Psychiatry, 12:314-8.

Hansen, L. A., Samuel, W. 1997. Criteria for Alzheimer’s disease and the nosology of dementia with Lewy bodies. Neurology, 48:126-32.

Ince, P., Irving, D., MacArther, F., Perry, R.H., 1991. Quantitative neuropathology of the hippocampus: comparison of senile dementia of Alzheimer type, senile dementia of Lewy body type, Parkinson’s disease and non-demented elderly control patients. J Neurol Sci, 106:142-52.

Ince, P. G., McArthur, F. K., Bjertness, E., Torvik, A., et al, 1995. Neuropathological diagnoses in elderly patients in Oslo: Alzheimer’s disease, Lewy body disease and vascular lesions. Dementia, 6:162-8.

Klatka, L. A., Louis, E. D., Schiffer, R. B., 1996. Psychiatric features in diffuse Lewy body disease: a clinicopathological study using Alzheimer’s disease and Parkinson’s disease. Neurology, 47:1148-52.

Kosaka, K., Iseki, E., Odawara, T., et al, 1996. Cerebral type of Lewy body disease. Neuropathology, 16:32-5.

Louis, E. D., Klatka, L. A., Lui, Y., Fahn, S., 1997. Comparison of extrapyramidal features in 31 pathologically confirmed cases of diffuse Lewy body disease and 34 pathologically confirmed cases of Parkinson’s disease. Neurology, 48:376-80.

McKeith, I. G., Fairbairn, A., Perry, R. H., Thompson, P., Perry, E. K., 1992. Neuroleptic sensitivity in patients with senile dementia of Lewy body type. British Medical Journal, 305:673-8.

Mega, M. S., Masterman, D. L., Benson, D. F., Vinters, H. V., et al, 1996. Dementia with Lewy bodies: reliability and validity of clinical and pathological criteria. Neurology, 47:1403-9.

Perry, E. K., Haroutunian, V., Davis, K. L., Levy, R., et al, 1994. Neocortical cholinergic activities differentiate Lewy body dementia from classical Alzheimer’s disease. Neuroreport, 5:747-9.

Salmon, D. P., Glasko, D., Hansen, L. A., Masliah, E. et al, 1996. Neuropsychological deficits associated with diffuse Lewy body disease. Brain Cognition, 31:148-65.

Samuel, W., Alford, M., Hofstter, C. R., Hansen, L., 1997. Dementia with Lewy bodies versus pure Alzheimer’s disease: differences in cognition, neuropathology, cholinergic dysfunction, and synaptic density. Journal of Neuropathology and Experimental Neurology, 56:499-508.

 

Resources

Family Caregiver Alliance
180 Montgomery Street, Suite 900
San Francisco, CA 94104
(415) 434-3388 or
(800) 445-8106
(415) 434-3408 (Fax)
E-mail: info@caregiver.org
Web Site: www.caregiver.org
Family Care Navigator: http://caregiver.org/caregiver/jsp/fcn_content_node.jsp?nodeid=2083

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues; provides assistance in the development of public and private programs for caregivers; publishes timely reports, newsletters and fact sheets; and assists caregivers nationwide in locating resources in their communities.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, ALS, head injury, Parkinson’s and other debilitating health conditions that occurs most often in adults.

 

Reviewed by William Jagust, MD and prepared by Family Caregiver Alliance. February 2001. Updated June, 2010. Funded by the Alameda County Area Agency on Aging and the California Department of Mental Health. ©2010 All rights reserved.

 

Drug overuse threatens nursing home residents. Routine prescribing of powerful medications occurs too often, our investigation finds

Last reviewed: December 2010


More than five years after the Food and Drug Administration warned that drugs routinely prescribed to nursing-home residents posed serious threats, including an increased risk of death, inappropriate use remains high, according to a recent analysis by the American Society of Health-System Pharmacists (ASHP). The project is part of a CRH Best Buy Drugs ongoing investigation of medication prescribed “off-label.”

The drugs in question, atypical antipsychotics, are approved by the FDA to treat bipolar disorder and schizophrenia. But they’re frequently used off-label to control agitation, aggression, hallucinations, and other behavioral symptoms in elderly patients with Alzheimer’s disease or other forms of dementia. There are no FDA-approved drugs to treat these behavioral symptoms, but doctors can legally prescribe any drug for any reason they deem appropriate.

But those medications—such as aripiprazole (Abilify); olanzapine (Zyprexa); quetiapine (Seroquel); and risperidone (Risperdal and generic)—pose substantial risks, especially to older people, that include diabetes, movement disorders (some permanent), pneumonia, stroke, weight gain, and even sudden cardiac death.

“There is limited evidence for the efficacy of these medications and evidence of significant safety risks,” says E. Ray Dorsey, M.D., an associate professor of neurology at the Johns Hopkins University School of Medicine. “In addition, many of the people receiving them have limited capacity to weigh the risks and benefits of taking them.”

According to FDA estimates, the rate of death among elderly dementia patients with behavioral problems who received antipsychotics was about 4.5 percent over the course of a typical 10-week controlled trial, compared with about 2.6 percent for a placebo group. This prompted the FDA to require black-box warnings—the strongest type—to be added to the labeling of atypical antipsychotic medications in 2005. The FDA broadened the warning in 2008 to include the labels on “typical” or older antipsychotics, including chlorpromazine (only available as a generic now) and haloperidol (Haldol and generic).

What measures should you try first?

In a study published in the 2010 Archives of Internal Medicine, researchers found that the use of antipsychotics often began during a patient’s first week in a nursing home. That suggests that behavioral interventions—the treatment of choice—are used minimally, if at all.

“The patient is scared and upset in a strange environment, and the caregiver may lack training in how to respond,” explains Kenneth Brubaker, M.D., a geriatrician and board member of the American Medical Directors Association (AMDA), a group of health professionals who work in nursing homes and assisted living facilities.

“I would advocate that a family member be present as much as possible during the adjustment period, because that’s the patient’s only contact with reality,” says Brubaker. “Having frequent phone conversations between patient and family help, as do looking through family photo albums together or compiling a DVD of the patient’s life story to remind them of the past.”

Frontline caregivers—who deal directly with residents with dementia-related behavioral problems—often have limited skills in using such approaches, Brubaker says. At those nursing homes, according to Brubaker, agitated new residents are likely to be quieted with antipsychotic drugs in lieu of family photos.

This off-label drug use report is made possible through a collaboration between Consumer Reports Best Buy Drugs and the American Society of Health-System Pharmacists. This is the18th and 19th in a series based on professional reports prepared by ASHP.

These materials were made possible by a grant from the state Attorney General Consumer and Prescriber Education Grant Program, which is funded by a multistate settlement of consumer fraud claims regarding the marketing of the prescription drug Neurontin (gabapentin).

http://www.consumerreports.org/health/best-buy-drugs/atypical-antipsychotics/the-basics/index.htm?EXTKEY=NB0CNT0H

NEW REPORT HIGHLIGHTS DELAYED DIAGNOSIS AND CAREGIVER BURDEN IN LEWY BODY DEMENTIAS

NEW REPORT HIGHLIGHTS DELAYED DIAGNOSIS AND CAREGIVER BURDEN IN LEWY BODY DEMENTIAS

ATLANTA, GEORGIA, USA, July 12, 2010 – Nearly 80% of people with Lewy body dementias (LBD) received a diagnosis for a different cognitive, movement or psychiatric disorder before ultimately learning they had LBD, according to the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias, released today.

This new report reveals people with LBD and their caregivers face barriers to obtaining an early LBD diagnosis. Caregivers rate specialists and general practitioners as inadequate in discussing disease progression. Additionally, caregivers experience moderate to severe emotional burden, and most experience a sense of isolation because so few people know about LBD.

LBD is the second-most common form of degenerative dementia in the elderly, affecting an estimated 1.3 million people in the United States. Symptoms include dementia, unpredictable variations in cognition, attention or alertness; hallucinations, Parkinson’s-like symptoms, a sleep disorder characterized by physically acting out vivid nightmares and dreams, and a potentially life-threatening sensitivity to certain medications.
“LBD is a family disease, affecting not just the person with LBD but also the caregiver,” said Angela Herron, President of LBDA’s Board of Directors. “This report underscores the challenges presented by a disease that affects cognition, movement, behavior, sleep and mood. Despite the fact that LBD is a common form of dementia many doctors and other medical professionals are unfamiliar with LBD, compounding the burden even further.”

Importance of Early Diagnosis and Physician Awareness of LBD

Half of people seeking a diagnosis saw 3 or more doctors for 10 visits over the course of a year before they were diagnosed with LBD, and diagnosis required more than two years from the onset of symptoms for 31% of cases.

Although prognosis varies among individuals, LBD is often a more rapidly progressive disease than Alzheimer’s disease, and early diagnosis provides families an opportunity to plan for expected decline in cognition, function and behavior. Given the evidence that suggests treatment with cholinesterase inhibitors may benefit patients with LBD more than those with Alzheimer’s disease, barriers to diagnosis have a negative impact on both the patients’ and caregivers’ quality of life. Especially important, early diagnosis of LBD provides physicians with an opportunity to minimize exposure to medications that may aggravate symptoms, such as antipsychotic medications. Nearly 60% of people with LBD may experience severe, potentially irreversible reactions to antipsychotic medications, and in rare cases, a life threatening condition called neuroleptic malignant syndrome may also occur.

LBD Progression Not Adequately Addressed

While neurologists made most LBD diagnoses, caregivers most often relied on primary care physicians for ongoing follow-up care and reported difficulties coordinating treatment of LBD symptoms between primary care physicians and specialists, as medication for one LBD symptom may worsen another being treated by a different physician. Caregivers rated over 40% of both generalists and specialists as inadequate in telling families what to expect in the future, and more than half of physicians as inadequate in suggesting telling the family where to find more information on LBD or community-based resources.
“The lack of information on disease progression is a serious challenge to LBD families,” stated Herron. “It’s essential that families plan in advance for the relentless progression of LBD, and not having answers on what that decline will look like or how fast it may occur, adds significant stress to an already difficult situation.”

Caregiver Burden is Physical and Emotional

Caregivers reported moderate to severe levels of disability in the person with LBD and over 90% had taken over instrumental activities of daily living, like preparing meals, managing medications, transportation, finances and appointments. Over 60% of caregivers indicated the person with LBD could not perform basic activities of daily living, such as dressing or bathing.

People with LBD had high rates of behavioral problems and mood changes and two-thirds of caregivers reported a crisis in the past year that required a hospital emergency room, emergency medical services, psychiatric care, or law enforcement.

LBD caregivers face a number of challenges: social, medical, functional and financial. LBD caregivers feel isolated and often have to respond to crises, but may not be receiving adequate support from family, friends or healthcare providers. These features have the potential to lead to adverse outcomes for the caregiver “burnout” including stress, depression and poor health.
“Poorer caregiver outcomes directly lead to increases in patient institutionalization and declines in quality of life, stated Dr. James E. Galvin, a member of LBDA’s Scientific Advisory Council and Professor of Neurology and Psychiatry at New York University. “This may be particularly important in LBD where patients are at an increased risk of institutionalization and mortality.”

The findings are based on data collected by the Lewy Body Dementia Association (LBDA) in an online survey of 962 LBD caregivers. Designed by Steven H. Zarit, PhD, an expert on caregiver burden in dementia and Professor of Human Development at Penn State University, the survey was conducted over a 6-month period. Dr. Galvin analyzed the survey data, which was published in the July, 2010 issue of Parkinsonism & Related Disorders and the April-June, 2010 issue of Alzheimer Disease & Associated Disorders.

The full text of the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias can be viewed by visiting http://www.lbda.org.

The Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA’s Scientific Advisory Council is comprised of leading experts from the United States, Canada, the United Kingdom, and Japan in research and clinical management of Lewy body dementias. To learn more about LBDA, visit www.lbda.org.

Frontotemporal Dementia strikes in the prime of life

Here is an excellent review of FTD.

Frontotemporal Dementia strikes in the prime of life.

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