Updated 16 June 2009

Caregiver Comments Submitted in Advance of Live Discussion: Betwixt and Intermixed—Dementia With Lewy Bodies

(Brand names of drugs are in parentheses after generic names.)

See Live Discussion: Betwixt and Intermixed—Dementia With Lewy Bodies

General Questions
Treatment/Drugs
Symptoms and Progression
Hallucinations
Genetics
Recognition/Awareness/Self-Insight
Resources

General Questions

Mom was diagnosed in 2003 with Alzheimer-like dementia. She recently developed symptoms of Parkinson's and drug side effects to escitalopram (Lexapro), lorazepam (Ativan), and olanzapine (Zyprexa). Her hospice nurse thought her symptoms could be DLB. Are these diseases separate entities or a continuum of brain deficits?

Are we getting any closer to confirming diagnosis prior to autopsy?

When my loved one passes away, should I consider allowing an autopsy to aid in research to LBD?

Are there differences in the language and specifically motor speech deficits between AD and LBD?

Is there any correlation between LBD and lifelong attention deficit issues (ADHD)? The cognitive profiles are similar (e.g., executive function problems).

Is LBD being aggressively investigated the way that AD is starting to be? Is your research funded by the Alzheimer's funders? Should there be a movement to distinguish LBD on a fundraising level or is that counterproductive due to the disease overlap?

Does anyone with LBD ever recoup mental capabilities?

My father passed away from DLB, or so we thought. We donated his brain for research and the autopsy came back as having no Lewy bodies. Do LB and Alzheimer’s mimic each other and can you explain the difference?

Are the hallucinations/delusions the main difference between DLB and AD? And can people presenting with delusions otherwise score quite well on standard cognitive testing, like the MMSE?

My husband is 66. He was diagnosed with Alzheimer’s seven years ago. Four years ago after extensive testing, he was diagnosed with DLB with parkinsonian symptoms. He is on memantine (Namenda), carbidopa (Stelevo), selegiline (Zelapar) and the rivastigmine (Exelon) patch. He no longer drives and is having more trouble putting together sentences, dialing a phone, using the remote control, etc. He does mow the grass but misses a lot of it. He is now having much more trouble with grandchildren’s names, etc. Do you think research is getting any closer to reversing his problems?

Treatment/Drugs

Is DLB responding to any meds at this point? If so, which ones should be considered and what side effects are associated with them? Thanks.

Is donepezil (Aricept) the best drug to counter memory loss in DLB? If not, what is?

Does memantine (Namenda) have value for a DLB patient?

What happens to DLB patients who undergo epidural pain treatment? Should I expect side effects, changes in the DLB?

My father had surgery three years ago as a healthy 58-year-old man and ever since hasn’t been the same. Now he's been diagnosed with DLB. Is there a link between DLB and surgery/anesthesia?

Do all patients on DLB meds and Parkinson’s meds experience bad side effects?

It has been suggested to me that quetiapine (Seroquel) is the only medication that should be given to my husband who has DLB when he has “bad behavior.” What is your opinion and suggestion for the best medication for these behavioral problems? They make caregiving much harder.

My mother has had DLB for a year. She has been taking quetiapine (Seroquel), lorazepam (Idalprem) and rivastigmine (Exelon, 9 mg) for the past six months and her hallucinations have disappeared. Are these the correct medications, and will their effect last?

My husband has DLB and a lot of stiffness in his legs, making it almost impossible for him to walk and move around. Right now that is his worst problem. Is there something he can take that will not cause other problems?

My father is on no any other medicine than his Parkinson’s med. I would consider him in the later stages of DLB but was wondering if there is any other treatment available to improve his quality of life.

My husband was diagnosed with Parkinson’s 10 years ago. Five years ago he was diagnosed with DLB. I find that the less Parkinson’s medicine he takes, the better he is. Is this the usual case?

My husband’s hands curl up a lot. Is this from a drug or is it a Parkinson’s symptom?

Could anticholinergic drug use be the cause of DLB? Or antihistamine drug use? Any research on this?

My husband has DLB and was given a drug called trihexyphenidyl (Artane) for drooling. Mentally he reacted badly while on this drug. Please caution others of the dangers of anticholinergics.

Which new antidepressive medications might be safe for persistent depressive symptoms in DLB patients?

Could you please discuss over-the-counter meds that should be avoided? Thanks.

My husband has had a continually running nose and now his eyes seem to constantly pool and tears run down his cheeks. Is this part of a decline in the autonomic nervous system? Is there any temporary relief for the eyes?

Are there any new drugs on the horizon to offset the devastating effects of DLB?

My family has been dealing with my mother's DLB for 18+ months, although now that we have the diagnosis, we know it started much earlier. She is 62 and rapidly declining (she moved through the moderate stage in a mere six months). At what point do you stop the antipsychotic drugs and rivastigmine (Exelon) and just let her go? She seems at times to already be in her own world and is losing her will to fight anymore. I don't want to give up hope, but to watch her suffer is nearly unbearable.

Is there anything that slows the progression? Exercise, drugs, vitamins?

My loved one has so far progressed slowly. We think that’s partly due to nutritional supplements. Do you agree?

I am wondering if there could be a severe vitamin deficiency associated with this disease.

I’ve read about resveratrol stopping the progression. Do you know anything about this? Thank you so much for your diligence and hard work.

From experiences shared by others, I learned that some people with DLB cannot eat fish while taking drugs like rivastigmine (Exelon). We were big fish eaters, and since eliminating fish from my loved one's diet there has been a marked improvement. He has a severe allergy to shellfish. Have you heard of this before?

Other dementia patients can usually take any of the antipsychotic medications. Why not DLB patients? What is different about DLB that prohibits the use of all these medications?

Symptoms and Progression

In what age range does DLB begin?

Are sleep problems and stiff muscles common symptoms? Is there medication that will help?

My 75-year-old father with DLB will eat continuously if we let him; he will stuff food into his mouth even when full, which leads to choking. My mother, his 24/7 caregiver, now has to feed him small portions, remind him to chew and swallow, then allow him another few bites. Is this a common symptom? He has all the other typical symptoms of DLB except hallucinations. His drooling has increased significantly over the past month, as has his "frozen" behavior.

What does the typical progression of DLB look like? Can you please describe the stages of the disease, so I know what to expect as it progresses?

How fast does DLB progress? My wife was diagnosed in March.

How long from diagnosis to the end? Can you give me a research reference on duration of DLB, average or range?

My wife is now diagnosed with DLB after having had PD for 11 years. I need to know what I am in for. Please describe "rapid decline" regarding future months or years.

What is the life expectancy with DLB compared to AD? I heard it is shorter.

My husband has had two quadruple bypass surgeries, the last one in 1994 at age 60. Months after the last surgery he went back to work but the math he had to do for his job was too much for him. He just couldn't do it. He had to give up a job he loved and had been doing for over 30 years. He also made a mess of our checkbook many times. He was most difficult to live with, as opposed to normally being a kind, loving, and gentle man. He had vascular surgery again four times in 1997 and was off-the-wall difficult to handle. He was semi-conscious for days and used his hands to write in the air. He had a nurse with him 24/7 the first few days. He saw cats in the register overhead, etc. It was also after that that he could no longer do things around the house that he had always done. He just couldn't figure out how to do them. He finally asked me to help. I believe he began having DLB in 1994, most definitely since 1997. Is it possible that his dementia could have begun so long ago?

My mother was diagnosed with DLB two years ago when my father's illness became terminal. At first we thought it was just stress. After my father's death she was hospitalized several times, and the last time was medicated because of anxiety to the point of becoming totally unresponsive. She was admitted into a nursing home, slowly weaned from a majority of the meds and "woke up." Since this awakening she has slowly declined. The hospital physician told us that she has had DLB for at least nine years. Is it normal for her come in and out of cognizance where she knows something is wrong but other times is completely in another world?

Could you address sleepiness? My husband is very tired during the day. Are there ways to combat these symptoms of the disease?

Can profound fatigue and weakness be a part of DLB?

We have been battling this disease for five years, with my husband being in hospice for over 19 months. Choking is his biggest problem now. What, if anything, can be done to alleviate this?

My father was diagnosed recently with DLB. He was in and out of different hospitals five times, then ended up in a care facility where he got better. So mom took him home and now he doesn’t remember being sick. He seems fine. How can that be?

Is incontinence part of the DLB or the PD?

My mother has been diagnosed with DLB. Her hallucinations and delusions are the biggest symptom. She has no problem with identifying family members. Will this change?

Hallucinations

Why are there hallucinations in DLB?

Do people with DLB always hallucinate?

The hallucinations create a big behavioral problem in communal living. Can you treat them with pharmacology?

Mom was first diagnosed and treated for AD in 1999, at age 70. Looking back, my siblings and I believe she was experiencing Lewy body symptoms long before that. She was already falling asleep during the day, her depth perception and her judgment skills were regressing. She was paranoid, had bad dreams, and would sleepwalk and end up in strange places in the house at night. She insisted that there were bugs crawling on the floors and countertops and would see little bunnies, puppies, and sometimes small children and strange men in her house. We'd be sitting with her on the couch and she would insist that these creatures or beings were there. Her gait was becoming stiff and unbalanced. Eventually she had more and more trouble walking without falling and as a result always needs assistance when she walks. She has been unable to feed herself for almost five years now.

She requires 24-hour care. We have been fortunate to have two capable and loving caregivers for her for almost three years. I know that if she was in any other situation she would not be doing as well as she is right now. She spends most of her time listening to Raymond Golden Girls, musicals and Gospel music. The last two are the only things that will soothe her when she begins to hallucinate and be afraid. Unfortunately, they don't always work. This mood can last for days or just hours. We have noticed that she has more trouble when the seasons change or when there is a full moon.

At this time she is taking donepezil, memantine, mirtazapine, cozarr, and 5 mg of Lorazepam at night to help her settle down to sleep. It doesn't always work. She has maintained her weight for about two years now, so eating is not a concern. She is incontinent and alternates between diarrhea and constipation, which are treated separately.

She does seem to know us most of the time. She loves to attend church with us on Sundays and even tries to participate in the singing and praying. The amazing part to me is that once in a while she will actually be able to make a comment, joke, or give an appropriate response in a situation. How we get this small piece of our mom back for an instant is beyond me, but it is nice to have her for a brief second since we haven't had her for over 10 years. I am hoping that whoever reads this will be able to give us some guidance in how to help keep our mom from being afraid or in pain. Any suggestions to help us control her terrors would be appreciated.

Do all people with DLB hallucinate? My dad has a recent DLB diagnosis but does not hallucinate, thank goodness. Does this mean his diagnosis is wrong?

What are “full body” visual hallucination in DLB? And what are their various forms?

Are musical hallucinations common to early-stage DLB? What can be done to eliminate or diminish them?

Is Exelon likely to exacerbate hallucinations in DLB patients?

Genetics

Is DLB hereditary?

My husband was recently diagnosed with DLB. His mother and sister both died from Alzheimer disease. Is there a connection?

How strong is the genetic link in DLB and what should our young adult children do with this knowledge?

I have a family pattern of DLB. Can I prevent getting it?

My paternal grandmother had dementia of some sort, and now my father and his brother have both been diagnosed with DLB—all three with no outward evidence of Parkinson’s. Has there been research as to the genetic links?

Recognition/Awareness/Self-Insight

My dad has DLB and Alzheimer’s. The most distressing thing so far as a caregiver is some doctors’ lack of knowledge about DLB and that DLB is different from other types of dementia when prescribing medication. Is this just my sense?

My wife sees a head of a clinical department at an Ivy League medical school for an eye condition. When I told him about her dementia with Lewy bodies, he asked: “What’s that?” Where can I point the doctors so they can catch up on DLB?

I am very much in agreement with the frustrations associated with diagnosis educating physicians! My husband was initially diagnosed with AD, which we treated for six years. Doing more reading, I discovered that he had all the symptoms of DLB. His REM sleep disorder goes back at least 30 years. He also has had no sense of smell for that many years. The Mayo clinic saw him in Scottsdale and agreed with the probable diagnosis of DLB. A well-regarded senior care physician made the statement that "while the universities may be trying to discern one type of dementia from another, they virtually all come down to Alzheimer's." Is that true?

Which websites are the most reputable for the latest DLB medical information?

How do I tactfully suggest that we have DLB, not Parkinson's and Alzheimer’s?

My father was just diagnosed with DLB. It came on suddenly, though looking back we see other signs that we didn't realize at the time are a part of the disease. He doesn't know he has DLB. I don't want to tell him. Should I?

My father has DLB. It wasn't until I went with him to a doctor’s appointment that he got diagnosed (turns out he wasn't telling the whole story to his doctor). What I find most difficult in caring for my father is his thinking he is all right and everyone else has a problem. Patience is a great asset for repeating directions, plans, and whatever comes up. Is there anything else we can do to help him keep focused and slow the disease?

What is the best way to get DLB patients involved in activities to help stimulate them if they do not want to do them?

Resources

How do I find a local neurologist who specializes in DLB?

My wife has progressed to the severe stage and I will need to place her soon. How do I find a qualified care facility in my area that has the staff and training to deal with advanced DLB patients?

Is there a "beginner's book" for the caretaker and the family? We need to read up on what to expect, what we can do. Thanks!

What research agency do I contact if I am willing to participate in a study about early biomarkers of DLB?