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.

Now I Have 2 Types of Dementia

No, I’m not bragging. I had my 6-month visit with the neurologist on Friday down in Pittsburgh. Even though it was only 20 degrees, it was a nice 2-hr sunny drive. On the way back, we stopped at Pam’s sister’s for a late lunch.

It was quite an interesting visit. Since I was the last patient for the morning, he was more relaxed than usual. And, of course, friendly, as usual. He spent more time than usual discussing and explaining about dementia.

Since I’ve been feeling quite well recently (I told him about the bad 6-8 week spell I had in August), I’ve found myself going into denial again. Thinking that I have been misdiagnosed and that I really don’t have any type of dementia and that its all psychological.

He once again showed me the results of the SPECT scan which I had a little over 1 year ago. He reviewed it and explained it to me. I’ve looked all over the web for SPECT scan pictures. I was not able to find one that looked exactly like mine. But I did find some which show relatively normal and abnormal results.

 

Spect Normal Spect Abnormal

                             Relatively Normal                          Abnormal

On SPECT scans, the colors which are pink, red, orange, yellow are the normal areas. Those which are blue and green are abnormal. The above scans are taken from a different cross section from mine, so they do not represent the same pathology as mine. I posted these just to show the contrast in colors.  

Very baffling to me. How can I be functioning at a relatively high level and have such highly abnormal scans? The majority of my pics were green and blue with a scattering of red, orange and yellow, consistent with frontotemporal dementia (FTD) and Lewy Body Dementia (LBD). He explained to me that individuals with FTD are highly intelligent with a high cognitive reserve which allow them to function in a relatively normal way and not always noticed by others as having anything wrong. He also said that I have the "slow" type which will allow me to go much further in life before becoming totally impaired. (Funny. I’ve never seen myself as all that intelligent. I was what I was and just took it for granted.)

He’s very pleased with the Aricept—Namenda combination and doesn’t want to change the dosages or combination. He also smiled and said that if I wanted to I could now go out and work.

"You’ll never be able to go back and function as a physician, but you could get a factory job or any other type of job which doesn’t involve the complexities of thinking required by a physician."

Now then. I couldn’t believe what I was hearing. Able to work again? That has to be some kind of a miracle, I told myself! But I’ll gladly accept it.

Needless to say, my mind has been racing with all kinds of things I’d like to do vs. what I could actually do given our residential location and driving conditions.

I did check online with the CA disability retirement plan which says that I can work as long as the salary + retirement benefits don’t exceed the amount which I made when I worked full time. Another unbelievable moment. I’m actually going to call them and discuss it on the telephone to make sure I’m not just seeing things.

Needless to say, I am excited. I’ve already started to look online for local job possibilities.

I just wish Pam could feel better and get the same kind of good news from her Docs as well. She’s been done with the pain, dizziness and trouble moving her arm and shoulder. She sees the "brain" neurosurgeon this Friday in Pittsburgh. Then we’ll also follow through with seeing the orthopedic surgeon, the physiatrist and physical therapy.

Some sad news though. I just spoke with a dear family-like friend whose husband suffers from Alzheimer’s Disease. He has now progressed to the point where he literally doesn’t know what "up" and "down" are. She’s finally worn down to the point of anxiety and depression. I gave her some recommendations to take to her PCP which I hope will help. Gil has the same neurologist that I do. He feels that Gil will need to be placed in a facility by this summer. Dorie doesn’t feel that they’ll be able to make it that long. I feel very sad about it. Life is just not fair.

Enough rambling for today. Going to watch some football…

 

Warmly………David

My response to: Anyone have experience with Psychiatrists being used for LBD patient?

I received this email this morning from LBDcaregivers@yahoogroups.com. My response follows this copy of the email.

Anyone have experience with Psychiatrists being used for LBD patient   Posted by: "drh488" Wed Nov 18, 2009 3:17 pm (PST)

Today we had a Psychiatric nurse visit Mom. By the time she left, she had my mother so emotionally upset that she is ready to go back to a nursing home and die. She brought up things to my mother that happened 30 years ago and hasn’t been discussed in 20 years. Our battle with the outside caregivers has turned into a social worker telling us that WE have become Lewy body dementia. Our extreme efforts to make people understand the disease has taken the place of taking care our mother. Our mother does best when she has structured days. Up at 6, breakfast at 8, regis at 9, lunch at noon….etc. Anything out of that structure causes problems with her. This company sends occ. therapy, phys therapy, and a nurse. We have explained time and time again that our Mom needs structure. To no avail we wont here from them for 3-4 days then they call saying "We are on our way". Next thing you know, 3 people in one day unexpected. My sister is so frustrated. Psych nurse told my Mom that she has LBD, what it is and everything. Brought up old memories of my sister dying, my dad dying. Then she leaves with my mom all upset and my sister to deal with it. Psych nurse wont be back for 2 weeks. I’m calling my Mom’s neurologist tomorrow to see if she should be talking to this psycho nurse…no pun intended….It seems to me that it is more destructive than constructive.  Interested if anyone has had similar experiences Thank You

I felt appalled as I read this post. It goes to show that not all educated individuals use good old fashioned common sense. Even a small child realizes something isn’t right when they see someone being hurt and being in distress.

As an aside, I should mention that dementia is not only a neurological diagnosis but is also an official psychiatric diagnosis.

Unfortunately, in spite of being taught to first DO NO HARM to a patient, medical professionals don’t always have good common sense either. One doesn’t always learn certain things from medical, psychology and nursing books.

Having said this, there is not excuse for someone to get someone upset like this. Psychiatrists, psychologists and psychiatric nurses are taught that certain mental health diagnoses should not be treated with traditional psychotherapy such as schizophrenia and dementia. These disorders are treated with supportive psychotherapy, not with insight-oriented psychotherapy as described in the email.

What good does it do to dredge up the past with someone who has dementia? How can it be helpful? I certainly don’t know. However, if an individual unsolicitedly brings up past memories, that is fine. They can be dealt with in a supportive way whether positive or negative. And reminding someone of past positive memories can be therapeutic as well. But to stir up past memories in any of us against our will is certainly cruel in my opinion.

So, yes, this behavior is undoubtedly more destructive than constructive. Definitely confront the involved providers and request them to discontinue this type of communication and involvement. If it doesn’t stop, go to the next level, etc. If it continues, and if it is possible, go somewhere else! If it smells like a duck, quacks like a duck and walks like a duck then it is a duck………….

This makes me wonder. How many of all caregivers, professional and non-professional unwittingly aggravate and/or cause some of the argumentativeness, irritability and combativeness seen in the dementia population?

I’d be interested to hear of others’ thoughts and opinions.

Warmly………….David

Lewy Body Dementia Association TV Channel on You Tube

This is the YouTube location for The Lewy Body Dementia Association.

You’ll find excerpted lectures, and information pertaining to Lewy Body Dementia (LBD) including new trends, difficulties in diagnosing and behavioral challenges associated with LBD.

Please feel free to subscribe to this channel.

Warmly…………….David

61, Lewy Body Disease and the 10 Commandments

I’ve just discovered this website. Very nice. This link is for Lewy Body Dementia but it can be used for other info as well.

And thanks to my best man, Ed, for sending me this email. It’s a nice abbreviated form for those of us with dementia! Wink

Ten Commandments

Some people have trouble with all those ‘shall’s’ and ‘shall not’s’ in the Ten Commandments.. Folks just aren’t used to talking in those terms. So, in middle Tennessee they translated the ‘King James’ into ‘ Jackson County ‘
language…..no joke (posted on the wall at Cross Trails Church in Gainesboro , TN ).


(1) Just one God
(2) Put nothin’ before God
(3) Watch yer mouth
(4) Git yourself to Sunday meetin’
(5) Honor yer Ma & Pa
(6) No killin’
(7) No foolin’ around with another fellow’s gal
(8) Don’t take what ain’t yers
(9) No tellin’ tales or gossipin’
(10) Don’t be hankerin’ for yer buddy’s stuff


Sshhh. Today is my 61st — Birthday Cake

Warmly……….David

Got thirst?

I got thirsty today from working outside (not good). We trimmed, pruned, cut grass and mulched some leaves. Wow! What a great byline for the national nightly news! Applause But it was a lot of fun. Yea, Pam and I are both aching now…………where’s that aspirin??

The last week or so has been much better. In fact, it feels like I did all summer long. I’ve never been able to achieve my baseline since becoming ill but nonetheless I’m OK with that. This LBD truly is cunning, baffling and powerful! One day they will have an answer to all the mysteriousness of the symptomatic fluctuations of Lewy Body Dementia.

So back to being thirsty. I remembered blogging about dehydration last fall. Particularly with regard to the elderly. And in the winter……not just summer (whenever we think of dehydration the most). So I thought I’d cheat and repost it again since winter is right around the corner. Hope it is helpful to someone.

Signs and Symptoms of Winter Dehydration in the Elderly and 8 Ways to Avoid Them

It’s Winter! Dehydrated? How could I be? Dehydration can occur anytime of the year. We think of summer time as being a time to avoid the sun as well as heat stroke and heat exhaustion. Here are some tips to keep you and your elderly loved ones well hydrated this winter. And to better health!

Dehydration can kill. It is crucial for anyone to stay properly hydrated but it is even more important for seniors who have other comorbidities as well as dementia like diseases. One of the reasons that the dehydration threat is higher for seniors is because of thinner skin that comes with aging. The thinner skin makes a person more prone to losing fluid. Another issue that makes seniors more open to fluid loss is their medications, some medicines can cause you to become easily dehydrated.

A wide array of medical issues can lead to dehydration. Considering that our bodies are made up of 50% to 65% water, this element is critical to virtually all our physical functions. Every organ and system of the body depends on water, so a shortage of fluid can naturally lead to serious health consequences. Dehydration is one of the most frequent causes of hospitalization among people over the age of 65. Worse, at least one study has found that about one-half of those hospitalized for dehydration died within a year of admission. Older people are at greatest risk for dehydration because the mechanism that normally triggers thirst becomes less sensitive with age. In addition, as we age, a lower percentage of our body weight is water, so dehydration can occur more rapidly. Those elderly individuals most vulnerable to dehydration live alone, especially when they are ill. In addition to fluid lost from fever from flu, or diarrhea from a stomach virus, sickness usually interferes with normal eating and drinking patterns.   We lose water in many ways.

  1. Breathing results in humidified air leaving the body
  2. Diarrhea is the most common reason a person loses excess water. A significant amount of water can be lost with each bowel movement. Worldwide, dehydration from diarrhea accounts for many of the deaths in children.
  3. Vomiting can also be a cause of fluid loss; as well, it makes it difficult to replace water by drinking it.
  4. The body can lose significant amounts of water when it tries to cool itself by sweating. Whether the body is hot because of the environment (for example, working in a warm environment), intense exercising in a hot environment, or because a fever is present due to an infection, the body loses a significant amount of water in the form of sweat to cool itself. Depending upon weather conditions, a brisk walk will generate up to 16 ounces of sweat (a pound of water).
  5. In people with diabetes, elevated blood sugar levels cause sugar to spill into the urine and water then follows. Significant dehydration can occur. For this reason, frequent urination and excessive thirst are among the symptoms of diabetes.
  6. Burn victims become dehydrated because water seeps into the damaged skin. Other inflammatory diseases of the skin are also associated with fluid loss.
  7. The inability to drink adequately is the other potential cause of dehydration. Whether it is the lack of availability of water or the lack of strength to drink adequate amounts, this, coupled with routine or extraordinary water losses, can compound the degree of dehydration.
  8. One common side effect of many medicines is increased frequency of urination. You need to compensate for these additional lost fluids by drinking more than usual. Medications that often cause this problem are diuretics, blood pressure drugs, antihistamines and psychiatric drugs.
  9. The aging process can diminish our natural sense of thirst, but if you also suffer from incontinence, you may be reluctant to drink fluids throughout the day. Sipping often in small amounts is essential to avoid becoming dehydrated.

The body’s initial signs and symptoms of dehydration are:

  • Thirst
  • Decreased urine output. The urine will become concentrated and more yellow in color.
  • Fatigue
  • Headache
  • Dry nasal passages
  • Dry, cracked lips dry mouth the eyes stop making tears sweating may stop muscle cramps nausea and vomiting lightheadedness (especially when standing). weakness will occur as the brain and other body organs receive less blood.
  • Coma and organ failure will occur if the dehydration remains untreated.
  • Irritability & confusion in the elderly should also be heeded immediately.

Here are some easy remedies and ways to prevent dehydration:

  1. As is often the case in medicine, prevention is the important first step in the treatment of dehydration.
  2. Fluid replacement is the treatment for dehydration. This can include: water, juice, soups and clear broths, Popsicles, Jell-O, ice cream, milk, puddings, decaffeinated beverages, Kool-Aid, nutritional drink supplements (Ensure, Boost, Sustacal, Resource and instant breakfast drinks), and replacement fluids that may contain electrolytes (Pedialyte, Gatorade, Powerade, etc.)
  3. Reduce or eliminate dehydrating beverages such as coffee, tea and soft drinks (unless decaffeinated). But even decaffeinated drinks can contribute to dehydration. Beware of alcohol intake too. Alcoholic beverages increase risk of dehydration because the body requires additional water to metabolize alcohol and it also acts as a diuretic.
  4. If you drink the unhealthy beverages, you need to add even more water to you daily total. The dehydration caused by those drinks must be compensated for by increasing the water.
  5. Eat lots of fruits and vegetables. Most have a high water content.
  6. Drink water all day long in small amounts. It is not good to suddenly gulp down 64 ounces of water. You can fill a 24-32 ounce tumbler in the morning, refill it by late morning and refill again for the afternoon. Consume that by 5 PM. Most people need to start limiting fluids 1-3 hours before bedtime.
  7. Individuals with vomiting and diarrhea can try to alter their diet and use medications to control symptoms to minimize water loss. Acetaminophen or ibuprofen may be used to control fever.
  8. If an individual becomes confused or lethargic; if there is persistent, uncontrolled fever, vomiting, or diarrhea; or if there are any other specific concerns, then medical care should be accessed. Call 911 for any patient with altered mental status – confusion, lethargy, or coma.

Remember that the lack of a sense of thirst is not a reliable indicator of the need for water. You need water long before you feel thirsty.

Warmly………….David

Donna says, “I really hope that I am helping and not hurting him”

COMMENT from Donna on the “I’m forgetting to eat” post.

Submitted on 2009/10/12 at 12:54pm

David,
I thank you for sharing!  I was researching DLB for information for my siblings when I came across your posting.  We lost our mother a year ago.  She had Alzheimers, but breast cancer is what took her Sept 2008.  Before she passed, our father was diagnosed with Lewy Body.  Since then, my husband and I have moved in with dad, so he wouldn’t be alone at night.  We all live realatively close to dad (all but one of 5 within 7 miles).  My husband and I both work full time, he is retired from the military and now teaches, I am in the Air National Guard working full time.
I see the fog that my dad is in, and it kills me that he is alone for the better part of the day.  I have done some research to educate me on what my dad is experiencing.  I am hoping that my siblings will step up to the plate and spend some time with dad, understand what he is going thru to help him.  When my dad halucinates, at night, I always anounce myself before I go into his room, and then I ask him to ask the people to leave, he usually says they are gone, only once has he said they are right there, when I say it is time to leave so we can go back to sleep.  Then I reasure dad that I have check the house and all the doors are locked and we are the only ones left in the house. I really hope that I am helping and not hurting him. Yesterday was the Race for the Cure, which my husband and I participated in.  Before we got back to dads house, he called and stated that he couldn’t find mother, but that she was there 5 minutes ago.  It really hurt for me to tell him that she has
been gone for over a year.
I have rambled enough.  Thank you for your explaniation of the fog that I have seen my father in.  God Bless you and keep you safe, I have added you to my prayer list as well.
Donna K

Hi Donna…………….I am sorry about your father. If it were me, I think I’d want you to do the same thing. Simple reassurance is a marvelous treatment! Even if the hallucinations persist when you go into the room, I would suggest that you don’t argue. Sometimes simple distracting comments help. Thumbs-up

Warmly…..David

NPH and Dementia

I’m glad many have enjoyed the pics of the flowers and afghans.

I came across some information this morning on normal pressure hydrocephalus. It reminded me of my neurology rotations. Although it is fairly rare, I was able to see several cases of it. And, yes, it truly did manifest itself as dementia in all of the 5 cases which I saw. And it was one of the questions on my medical licensing exam. Fortunately I won’t forget the symptoms after seeing them in real life. But I feel badly that many physicians frequently misdiagnose this disorder. Hopefully, the Dr. will order a consultation from a neurologist to appropriately diagnose it.

Normal pressure hydrocephalus (NPH) is an abnormal increase of cerebrospinal fluid (CSF) in the brain’s ventricles, or cavities. It occurs if the normal flow of CSF throughout the brain and spinal cord is blocked in some way. This causes the ventricles to enlarge, putting pressure on the brain. Normal pressure hydrocephalus can occur in people of any age, but it is most common in the elderly population. It may result from a subarachnoid hemorrhage, head trauma, infection, tumor, or complications of surgery. However, many people develop NPH even when none of these factors are present. In these cases the cause of the disorder is unknown.

Symptoms of NPH include progressive mental impairment and dementia, problems with walking, and impaired bladder control leading to urinary frequency and/or incontinence. The person also may have a general slowing of movements or may complain that his or her feet feel "stuck." Because these symptoms are similar to those of other disorders such as Alzheimer’s disease, Parkinson’s disease, and Creutzfeldt-Jakob disease, the disorder is often misdiagnosed. Many cases go unrecognized and are never properly treated.

 

Raquel says …"But I had never seen that entrelac type. How do you knit it as not to show the yarn overlapping on the wrong side? Can you tell me the secret?"

Some people like the texture of the overlap on the wrong side. However, if you want to eliminate it, when picking up the stitches on each rectangle just pick up only the outer loop—not both loops. Or, don’t slip each stitch on every row. There are some other technique variations which can make the front and the back of entrelac lay flat.

 

Imogene says…1. "David, a warm hello this morning! I love your Afghans. I would certainly ask you to make one for me if I felt it wasn’t too much. But, everyone else would ask for one also, and so, that would be too much." 2. "The Androderm Patch sounds like a winner to me. I have often thought my husband was low in testosterone. I am going to ask his Doctor if he can try the patch. How long did you use it before you saw results?"

The patch releases testosterone into the blood system immediately. However, it make take some time for it to actually see visible results.

You bring up a good topic about making projects for people. Pam and I have made handmade projects over the years as gifts, etc. Later, we’d find that the projects made of wool were tossed in a corner or had not been laundered correctly resulting in severe shrinkage. Some afghans made of good material were discovered on the floor for the pets, etc. We’ve also discovered that it’s difficult to phathom the cost of handmade items. And rightly so. Just walk into Walmart, Kohl’s, Sears, etc. The mass produced sweaters, throws, hats, socks are quite cheap. The yarn can get pricey especially if you make sweaters and scarves with yarn other than the brands which are sold in Walmart. Some handmade scarves are worth $75.00-$100.00 just in the yarn alone. Not to mention the time and work involved it making them. We’ve learned to use only the Red Heart and similar brands to use for regular afghans, kid’s blankets, sweaters and whatnot. They can easily be laundered and last for years even if they end up being a pet’s blanket. We’ve also tailored down our gifts using expensive yarns to only friends and family members who really appreciate the work involved and are willing to properly care for them.

The yarns used for the afghans I posted here cost almost $35.00 for each one and they were inexpensive yarns. I see some of their equivalents going for $50.00+ on Ebay. Actually I’m going to put these 2 scarves up for sale…….probably on Ebay or to someone with the best offer………I can always make more if I need something for a gift.

Warmly……….David

Reply to Laura Fisher, M.D.

Dear Dr.         Have you tried the coconut oil Dr. Mary Newport has described as a miracle treatment for her husband? Do you take fish oil (three or more caps per day)? Do you take testosterone replacement (skin gel)? Do you take selegiline or rasagiline? What if any vitamins and other supplements do you take? It is not completely clear to me how you were diagnosed. Was it based on an MRI coupled with some behavioral and subjective changes?
My father died in his eighties of combined LBD and Alzheimer’s disease and I am trying not to follow his example.
Sincerely,
Laura Fisher

Hi Dr. Fisher……………No, I have not tried the coconut oil. I need to study more about it. I am on Aricept 10-mg daily, Namenda 10-mg twice daily, 9 capsules of double strength fish oil, testosterone replacement therapy along with trazodone (for sleep). I take multivitamins, calcium and magnesium supplements along with vitamin D and B-complex daily. When I think about it, I take a vitamin E capsule as well. I’ve not gone overboard with all that’s recommended out there. Ah, yes. I do like my coffee in the morning and the good old home made iced tea!

I am now on a steady plateau with the above combination and am permitted to drive as long as I have a co-pilot with me. I’ve noticed the biggest difference since adding the Namenda to my regimen. I do find I slip backwards if I don’t use the testosterone replacement therapy. I’d love to be able to practice medicine again but have not totally come back to my base level. I still have enough deficits to keep me from totally functioning normally. I do well with regular activities of daily living as long as there is little pressure. Hobbies, crafts, gardening, TV, etc. Short term memory and immediate recall are still some problems for me as well as word finding difficulties.

I was diagnosed at the University of California, San Francisco’s Memory Clinic after being hospitalized for the entire evaluation. I following an LBD expert neurologist in Pittsburgh, PA. Pet scans of the brain have also shown the pathological changes as well.

I’ve never specifically been treated for my Parkinsonian symptoms. Azilect would certainly be something to discuss with my neurologist. During my last visit, he did mention starting an anti-Parkinsonian agent but I would like to hold off on that as long as possible.

Hope this helps……

Warmly………….David

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