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.

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.

Playing Catch Up

I don’t believe that I haven’t blogged for almost 1 week. And a busy week it has been.

We had super good weather on Friday and Saturday. Temps went into the high 60s and up to 70 on Saturday.    I raked the entire front lawn to get rid of all the winter debris and then fertilized it. I’m ashamed to admit it, but it took me the entire day to get it done. Seemed like I was taking a break every 10-15 minutes. I told Pam that if I were paid by the hour, I would have been fired. We got a good laugh out of it though. Together, we did some pruning of the bushes and shrubs. By Friday night I realized that I had over done it. I was so fatigued and weak that Pam had to help me walk into the bedroom, not to mention I was in some kind of dazed stupor. It’s taken the last 2 days just to recuperate from all the muscle aches and pains. Yesterday was rather bizarre. I tried watching some TV to relax and had marked difficulty following the characters and the story theme. It seems that every couple of minutes, there were 5-10 second gaps of memory. I kept trying to pay more attention. But within a minute or so, I lost something and couldn’t figure out what was happening. It just occurred. Very difficult to explain. Also, very frustrating. If one doesn’t get the gist of a movie or program at the beginning, then naturally the rest of the story gets tainted. And that drives me into total frustration. I can understand how many people with dementia experience troubles and can’t clearly explain what is happening to their family and friends.

Today I can walk almost normally.    We went to the Doc’s office for the weekly allergy injection. We also stopped at a medical supply store to pick up a TENS unit for Pam. Her pain Dr. ordered it to go along with all the pain meds she takes. Am hoping it’ll help a lot. She gets some relief after I massage her but very little.

Very windy with rain today.    Pam’s brother, Doug, was going to bring dirt today to make landscape mounds on the street side of the house and in the back yard. But, thanks to the rain, he’ll have to hold off. No muddy soup yet. After he brings it, then more planting and transplanting followed by a good mulching.

Norma commented on 2009/04/17 at 11:16am

Hi David,

Can you please tell me if you are still having trouble with chocking on your own saliva. (I just read a past post of yours.) My Mom, who is unable to tell me what is bothering her, started something new a few weeks ago. She starts coughing and choking a little when she awakens from sleep. It usually happens in the evening and at night. Thanks very much. I hope you are feeling well. Best, Norma

A very good question, Norma. Yes, I do still have problems with choking on my saliva, during eating and also when drinking fluids. Mine tends to happen both day and night. Seems like there is no rhyme nor reason to it. Drinking fluids most of the time is no problem. At other times, it seems as though the water, soda, etc. just wants to go down elsewhere. The same with food. Especially dryer foods like hamburger, etc. It is involuntary and totally out of my control. Very annoying to say the least. I remember reading somewhere that the deposits of the Lewy Body proteins affect the autonomic nervous system which in turn affects the swallowing mechanism in our bodies.

Many times the choking and coughing awakens me out of a good sleep during the nighttime. I totally understand what your Mom is going through.

I hope this helps.

Warmly………David

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Your Ideas Regarding a Brain Gift

I’ve added Dementia for 2 to my Blogroll.

Stephanie Grabreck wrote this controversial article on brain donors for research.

Brain tissue —More donors are urgently needed

More people need to donate their brains to medical research if cures for diseases like dementia are to be found, UK scientists say.

They say research is being hampered by a gross shortage of brains and are urging healthy people as well as those with brain disorders to become donors.

Brain research has proved essential for finding new treatments – such as dopamine for Parkinson’s disease.

Brain investigator Dr Payam Rezaie called the current situation “dire”.

He said thousands more brains were needed to look for the cause and treatments for conditions like autism and Alzheimer’s disease.

Most drugs already developed for brain-related diseases have relied on research using human brains

Dr Rezaie, from the Neuropathology Research Laboratory at the Open University, said: “For autism, we only have maybe 15 or 20 brains that have been donated that we can do our research on. That is drastically awful.

“We would need at least 100 cases to get meaningful data. But that is just one example. A lot of research is being hindered by this restriction.”

Short supply — Professor James Ironside, of the Human Tissue Authority, which regulates the donation process, said as well as a shortage of diseased brains to study, there was a bigger problem of getting hold of healthy donor brains for comparison.

He said this was down to poor awareness rather than people being squeamish.

BRAIN BANK BREAKTHROUGHS

• Discovery of L-dopa treatment for Parkinson’s disease
• Discovery of amyloid deposition in Alzheimer’s disease
• Discovery of Lewy bodies in dementia
• Discovery of variant Creutzfeldt-Jakob Disease
• Discovery of the role of glutamate in Schizophrenia

He helped set up a brain bank in Scotland to collect normal “control” brains from people who had died unexpectedly and needed an autopsy by law to establish the cause of death.

“We were surprised and pleased that over 90% of the relatives approached in this way gave consent.” He said more needed to be done to raise public awareness.

Dr Kieran Breen, of the Parkinson’s Disease Society, said over 90% of the brains in their bank at Imperial College London were from patients, with the remaining 10% of “healthy” brains donated by friends or relatives of patients.

“It is a question of awareness rather than anything else.”

But he said scandals like Alder Hey – where organs were kept without consent – have put some off donating their organs to medical research.

“There is also confusion. Some people are under the impression that if they sign up for a donor card that will include donating their brain for research. But it won’t.

Dr Lorna Wing, a retired expert who studied autism and helped change thinking about the condition as a spectrum disease rather than a single disorder, consented to donating the brain of her daughter, who had autism, after she died unexpectedly aged 49. “My husband and I still mourn her loss. One consolation for us is that we donated her brain and are donating ours in our wills.”

“Donor cards are about donating organs for transplant, not for medical science.”

He said anyone interested in becoming a donor should contact one of the 15-20 brain banks dotted around the UK.

The Medical Research Council is setting up a network to coordinate the existing brain banks from one central location. It is hoped this will make it simpler for those wanting to donate and for researchers to pool information and resources.

Dr Marie Janson, of the Alzheimer’s Research Trust, said: “Donated brains can be an immense help in the fight against dementia and are likely to become more important in the future.

“Most drugs already developed for brain-related diseases have relied on research using human brains.

“Unfortunately dementia research is still severely underfunded, and – if new treatments are not found – the number of people with dementia in the UK could increase from 700,000 to 1.5 million within a generation.”

Comment? Opinions? Questions?  Click here.

Oh yes. I’ve added a foreign language widget on the right side of the page. I’m finding there are more bilingual readers than I imagine.

Warmly………David Thomas

A Serious Comment along with some Dementia Humor

I noticed this in the comment section. It’s from Hope Stewart in Petaluma, CA. I am deeply touched by Hope’s courage and strength for reaching out for help and advice. I, alone, feel that I would be doing her a disservice by trying to answer this. Yes, I know all the textbook things to say. However, I think she needs some real practical advice and suggestions from other caregivers at this crucial time in her life…………to all my readers. Please read her comment seriously and then contribute your thoughts and advice at the bottom of this post where it either says, “NO COMMENTS” or “3 COMMENTS“, etc. Click on that button and go to the end of all the comments and post some pearls of wisdom in the REPLY box. On behalf of Hope, I’m thanking you in advance.

Well, I want to test your resolve and see if you will respond to my email.I have e mailed you privately in the past and now ask for your advise on how to accept this disease. My husband Gordon is in an Altzeimer’s study at UC Davis and was diagonsed with Lewy Bodies 5 years ago. His evaluation yesterday gave me sad news. He has deteriated greatly in the past year. (poor executive skills, cognitive skills, no adl’s. They told me that usually a persons rate of deteriation is a predicter of what is to come. They said his is in the moderate/severe stages of Lewy Bodies. I’ve been going along with acceptance of “what is”. but now I’m sad and crying and scared. Any words of advise from you, a psychiatrist?

So glad your new year is starting off with good news.

Best, Hope Stewart

To the best of my knowledge, no one chose the correct answer from this block puzzle the other day. If anyone did, they didn’t make a comment on it.

One of the best ways to deal with the painful reality of dementia is to use some humor. If anyone gets angry with me, that’s OK. I did horribly worse when I took my first neuropsychological test! I can laugh at myself even though it is sad.

Three older men are undergoing a memory test at the doctor’s office.

The Doctor asks “What is three times three?”

The first man answers “274.”

The second man answers “Tuesday.”

The third man answers “Nine.”

The doctor pleasantly surprised at the third man’s
correct response, inquires “Great! How did you get that
answer?”

“Simple. Just subtract 274 from Tuesday.”

Someone wanted me to post a picture of me after my comment yesterday about trying to visualize people. If you look under the comment sections of some of the posts, there should be a small picture of me when I’ve made a comment.

Warmly………….David Thomas