Some questions about Lewy Body Dementia — Would you provide some input?

Pam and I are going to have a busy day today out and about. I’m working on part 2 of yesterday’s post but I won’t have time to finish it today.

Meanwhile, I’ve been thinking of something. I would like to ask for as much input as possible from those with Lewy Body Dementia (LBD) as well as from their caregivers and friends. Here are some of the questions I have:

  1. How old are you now?
  2. Are you male or female?
  3. How old were you when you were diagnosed with LBD?
  4. How long did you have signs/symptoms of Lewy Body Dementia or some other type of dementia before you were diagnosed with Lewy Body Dementia?
  5. Although no one can truly predict the prognosis of Lewy Body Dementia, many references indicate that the average length of life time with Lewy Body Dementia after diagnosis is about 7 years. What are your thoughts about this?

 Thanks in advance for you input. I sincerely appreciate it.




13 Responses

  1. I am responding for my husband: I am a 68 year old male who was diagnosed in July 2006 with LBD. Family members began noticing small things in 2003, diagnosed with PD in Feb. 2004.
    My husband is now in a nursing home, communicates & smiles infrequently but we believe he still knows who we are. Ray cannot walk by himself. He is not eating well, has dropped 45 pounds in one year, has pressure sores on his bottom, several anxiety attacks daily. I pray every night that to the Lord that if he cannot help him, to please take him home with his parents and grandparents. Other than his dementia, he is healthy as a horse. I do not think he will pass anytime soon but I know he wouldn’t want to live like this if he had a choice. Thanks, Leona

  2. My Mother is now 76. about 15 years ago she started having some mild cognitive problems and was also becoming fearful of being by herself and somewhat illogical. She was also having some problems walking and sleeping. about 12 years ago she was diagnosed with Parkinsons. It somewhat fit but not totally. She was then diagnosed with possible fibromyalgia (fibro fog). About 2 years ago she started with hallucinations, loss of balance, delusions, walking became much worse, attentions span nonexistant. We had a number of doctors say you’re getting older etc. Her pain management doctor helped my research and then find a neural psychologist to do the testing. He is the only doctor that isn’t telling us there isn’t anything else they can do (she has meds from the nuerologist for Parkinsons and the psychiatrist for LBD) we are weekly losing grouns now. However the deep tissue massage and accupuncture are helping the pain and mobility. He is helping us the best we can be as long as we can be. She has decided when its time no extraordinary means- no feeding tubes etc.
    She lives with me and we will try to keep it that way.
    I don’t know about the 7 years- I think some elderly with more health problems may go quicker- some that are younger or very healthy like my Mother was may be around longer. “only the shadow knows”

  3. Please be aware that the following piece is based on the discussions and observations of the LBD caring spouses. It is in no way based on research or science and is not intended to represent research or science. It is developed to assist newly diagnosed families with a framework to refer to. As one retired spouse has said, “To be forewarned is to be forearmed.”

    The phases have no specific time frame. Due to the fluctuations of the disease, the phases are not linear. Instead, phases tend to “ebb and flow” or subtly appear. Symptoms noted in an early phase may be present for the course of the disease. These symptoms may increase in frequency or severity over time. In addition, patients that are “high-functioning” may also show symptoms of Phase III or IV. By no means will a patient display all the symptoms listed in any specific phase. Therefore, each phase is described with “possible” symptoms.

    Most caregivers are concerned/worried that something is not right. Please note that symptoms from later stages can appear at this early phase. At the end of this phase, dementia is becoming difficult to deny
    · Possible REM sleep disorder; Restless Leg Syndrome; Hallucinations; possible Parkinson’s disease diagnosis, Myoclonus (involuntary jerking)
    · Increased daytime sleep – two+ hours
    · Loss of sense of smell (Anosmia); vision problems; hearing loss; speech problems
    · Impaired physical coordination (ataxia); shuffling gait; slowness of movement; altered posture (called Lewy Lean)
    · Chronic runny nose
    · Impaired comprehension and cognition; inability to learn new tasks; loss of initiative and interests; diminished alertness
    · Short-term memory loss but able to hide (mask) symptoms or engage in show time
    · Mood: Fluctuations; depressed/anxious; paranoia; may accuse spouse of infidelity, aggression
    · Able to engage independently in leisure activities
    · Handwriting is affected; impaired ability to handle financial responsibilities
    · Still may be able to work but driving skills often compromised

    Most caregivers are worried that something is wrong and seek medical attention. May be given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s). Please note that symptoms from later or earlier stages can appear at this phase.
    It is strongly suggested that caregivers consult with an elder law attorney at this phase. At least, have a Power of Attorney and Medical Power of Attorney document on the patient. Family, friends, caregivers may successfully take financial advantage of LO.
    Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.
    · Ambulates/transfers without assistance but increased risk for falls/requires walker; leaning to one side (Lewy Lean); possible fainting; able to perform most ADLs without assistance
    · Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth), occasional episodes of incontinence (one or two a month), constipation
    · Parkinson’s symptoms may be controlled with medication
    · Increased difficulty in:
    Finding words (aphasia); organizing thoughts; reading & comprehension; following TV programs; operating home appliances
    · May be able to administer own medications.
    · Able to follow content of most conversations
    · Able to be left unsupervised for two or more hours
    · Delusions; Capgras Syndrome (seeing or thinking that a person or objects have been replaced by another identical one); may be more depressed; more paranoid and more agitated

    Most caregivers have the correct diagnosis. Caregiver and patient actively grieve. Caregivers need regular planned respite. Caregiver needs require regular preventive health care.
    Caregivers may need home health aide assistance to maintain LO in the home. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety risk. The needs of the patient affect personal finances. Please note that symptoms from later or earlier stages can appear at this phase.
    · Ambulation/transfers are impaired, needs assistance with some portion of movement
    · At risk for falls; increase of Parkinsonism symptoms
    · Increase of autonomic dysfunctions; frequent episodes of incontinence (two+ per week)
    · Needs assistance/supervision with most ADLs; may require DME
    · Speech becomes impaired, projection (volume) may decrease
    · Able to follow content of most simple/brief conversations or simple commands; increased difficulty with expressive language
    · Able to be left unsupervised less than one hour but unable to work or drive
    · Unable to administer medication without supervision
    · Unable to organize or participate in leisure activities
    · Inability to tell time or comprehend time passing
    · Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring; increased confusion; delusions; and increased Capgras Syndrome
    · Severity of symptoms may increase or decrease

    Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care.
    The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services.
    · Needs continuous assistance with ambulation/transfers; high risk for falls; may need electronic lift recliner chair
    · Needs assistance with all ADLs; requires 24-hour supervision
    · Autonomic dysfunctions need regular medical monitoring; incontinent of bladder and bowel
    · Unable to follow content of most simple/brief conversations or commands; speech limited to simple sentences or one-to-three-word responses
    · Parkinson’s symptoms need regular medical monitoring
    · Choking, difficulty swallowing (dysphasia), aspiration, excessive drooling
    · Increased daytime sleeping
    · Hallucinations prevalent but less troublesome

    Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will.
    · Dependent for all ADLs; patient may require hospital bed, Hoyer lift or Mo-lift, suction machine, etc.); and assistance with repositioning
    · High risk for URI, pneumonia, and UTI ; skin breakdown; and may have a fever
    · Difficulty swallowing with possible decision for feeding tube necessary
    · Muscle contractions – hands, legs, arms; lean to either side very pronounced
    · May need nutritional supplements – Ensure/Boost/ Carnation Instant Breakfast
    · Unable to follow simple commands; decreased or no language skills
    · Constant delusions
    · Fluctuations less frequent and more severe
    May you find peace and comfort in knowing you are not alone.
    Jan Colello

    ADL Activities of Daily Living – dressing/bathing/ feeding oneself
    BP Blood Pressure
    CG Caregiver
    DME Durable Medical Equipment–wheel chair, shower chair
    DPOA Durable Power of Attorney
    LBD Lewy Body Dementia
    LO Loved One
    LW Living Will
    MPOA Medical Power of Attorney
    PCP Primary Care Physician
    POA Power of Attorney
    REM Rapid Eye Movement sleep disorder
    URI Upper Respiratory Infection
    UTI Urinary Tract Infection
    WCh Wheelchair

  4. I too am answering for my husband:

    1) He is 71 now.

    2) Male.

    3) Diagnosed w/ LBD at age 69 in 2007.

    4) I knew something was wrong w/ my husband in 2003 when he wasn’t able to get oriented when we were on vacation in Hawaii. In retrospect, he was showing word retrieval difficulty before then– he started calling every holiday Thanksgiving maybe about 2 years before that, but we just thought it was funny @ the time.

    5) In my husband’s case, I think the 7 year prognosis is right on, at least cognitively. I think whatever makes him an individual may be gone by the end of this year. Unfortunately, he’s physically very healthy, so…

  5. My husband,85 next month, was diagnosed with PD in 2002. His symptoms were mild. Since he was also experiencing word loss and memory impairment, after seeking several more opinions, in 2003 we heard the tragic probablity of LBD. I am not convinced that he is not dealing with ALZ as well. We live in a retirement community in an independant condo with private caregiving five days a week. He is quite healthy but refuses to exercise or go to physical therapy. He can no longer read or write. For the most part he is quite content being King of the Hill. I rarely get a decent night’s sleep in that he “talks” or sings while sleeping or has to use the bathroom once or twice a night.

    We have a small foundation, The Carmen Foundation, committed to 21st Century Neurological Research. In addition to contributions to MIND (, the MJ Fox Foundation and the LBDA, we sponsor educational projects and nursing scholarships here in Bend, Oregon where we moved in 2007. It is essential that all families plagued with these diseases give what they can to find antidotes so generations to come will not be faced with living a life without life.
    We are fortunate in that my husband, a Yale graduate and successful Mass. businessman, can afford to live in our private “Eden.” Were he in a facility, he would be long gone…though I often wonder if we are doing him any favors by facilitating his longevity.

    Thank you for the work you are doing to educate people about the inner journey. blessings, Marjorie Carmen/The Carmen Foundation

  6. My mom, 69 years old, was diagnosed in 2006 with Parkinson’s. She was having some tremors and was walking stooped over. The stooping began 3-5 years before that. She was diagnosed 2 months ago with LBD. Looking back, we can see a few things that may have pointed to Dementia (forgetting easily, needing to post notes around her house about things, hoarding stuff), but we just attributed them to her advancing age. She was still working full time and living alone. Her decline came very quickly–still working in August 2008 and not able to care for herself at all by November. Lived with me for 7 weeks–extreme confusion, hatefulness, paranoia, little mobility. In Nursing Home for 1 month–condition has stabilized for now–mobility better. In the process of finding the right meds for severe anxiety.
    I don’t know what to say about the 7 years. My mom is healthy otherwise, so she may live a long time. She would not want to live on this earth if it means only being a shadow of her former self, though.

  7. My husband, Sherman, showed some symptoms about 12-15 years ago (little we knew those were the prelude to LBD!): loss of sense of smell, gradual loss of hearing, gradual runny nose. Before that, he suffered from arrhythmia (atrial fibrillation) since 1989, his only health problem. By 2003 we went to the doctor for some memory problems, nothing too bad, but nevertheless a little worrisome.The Dr. did several tests -vitB12, thyroid, testosterone, etc.-, everything came back normal. Dr sent him for an MRI that showed some atrophy of his frontal lobe (I think), but he said it was minimal. He then sent him to a psychologist, who did a cognitive test for Alzheimer’s, which he passed with flying colors. The therapist did other tests and concluded that he was suffering from a deep-seated depression; that didn’t surprise us because he had had a very difficult childhood plus a very unhappy marriage -his first-, and was the type who bottles up all his frustrations. The doctor started him on Wellbutrin, which did a lot of good. His tendency to fall had started way back, around 1998, together with the REM syndrome. By mid-2004, I got very sick, almost died of a ruptured colon, and had to have major 2 surgeries in 3 months. After the first, Sherman was acting like a zombie, having a difficult time to take care of me and not understanding directions; that lasted for about 2 weeks, and he got better, but never went back to what he was before. To this day I’m convinced that the worry and grief that my illness caused him triggered all the latter symptoms. By 2005 he was in the hands of a neurologist. In 2006, by the advice of his speech therapist, we suggested to his neurologist the possibility of Parkinson’s, and she said “Yes, it could be”, and prescribed Sinemet. He could never take the high dose because of the hallucinations. Finally, by the end of 2007 we heard of a team of research doctors at the University hospital, and they were the ones who diagnosed him with LBD in January 2008. From then on, it was all the way down.
    So, the answers to your questions are:
    1. He would have been 76 thirty-eight days after his death.
    2. Male
    3. 75 when diagnosed (could have been much before had his neurologist been aware of LBD!)
    4. I would say about 10 years before diagnosis.
    5. Had he been diagnosed when the acute symptoms started -about 2005-, just 3 1/2 years of life after that.
    I have to add that he never had any aggresiveness, no terrorizing hallucinations, he never accused me or anybody else of any wrong. He didn’t showed the worse symptoms until almost the end (not able to move, to speak at all, to eat, getting lost, not able to get dressed, incontinency, nothing like that ’till the last month or two).
    I hope this helps.

  8. My husband had a second open heart surgery in 1994. He didn’t recover as quickly as the first bypass surgery in 1980. By 1995 he lost his job because he could no longer do the heavy math. He kept the checkbook in a mess. He was highly agitated. The doctor prescribed Zoloft.

    He had four surgeries on a AVF in 1997. The third surgery resulted in contracting MRSA, He had the fourth surgery to finally remove infected tissue that would not heal. He was sent home with a large excised area that needed to be packed three times a day for several weeks.

    By 1998 I noticed his high agitation when trying to do projects that he wanted to do around the house. I had to avoid him in order to remain calm.

    By 1991 He could not do repairs he had done all his adult life. He finally asked me to help him. I walked on eggshells, but we worked well together, and after that the fussing stopped, and he humbly asked for my help.

    One such case was repairing a leak in the back yard. He found the split pipe. Rather that fixing the split area with one fitting. He cut out about a foot of pipe, and had to get another piece of pipe and two fittings. He made the job much more complicated than it would have been.

    His thinking had begun to take that form in many areas while thinking things out.

    I was kicked and punched during the night, and would wake my husband and ask if he was angry with me. He didn’t know a thing about it, but he eventually moved to the guest room across the hall.He said my caughing kept him awake.

    He never recalled dreaming in all the years we were married, when I would tell him mine and would ask what he dreamed about. Then, He started having vivid dreams,

    One evening he saw a leopard in the hall, and he was not asleep. When I went into his room for a good night kiss, He told me of his beautiful leopard which in subsequent tellings it became a tiger.

    We had a loving talk and I asked him if he throught that was normal. He decided to see a doctor. We were refered to a Neurologist, who prescribed Aricept which helped a great deal. He diagnosed Alzheimer’s. I had given him four pages of notes I had been keeping of my husband’s unusual behavior. This occurred in 2005.

    I joined the Alzheimer’s email list, and told Geri Hall about his dreams and how he thought a group of men were chasing him. When one caught up to him he was fighting him off. She said it sounded like LBD along with other things I had told her. I tried to talk to the arrogant Neurologist which he refused to do. He prescribed Risperdal through his nurse on the phone.

    The Risperdal package has strong warnings about use in heart patients. I worried about it, but minded the Doctor and gave it to him. I was getting up every night wondering if this was the night to call EMS. Since I had lived with his heart trouble so many years, and had studied it a great deal, I knew when his pain was becoming too dangerous or not. It was difficult to watch. He couldn’t take Nitro as his blood pressure dropped dangerously.

    I couldn’t get the Doctor to respond to my calls so I took it upon myself to wean him off that medication. I can truthfully say he nearly died with it.

    His decline has been gradual. He took two naps a day about thirty minutes to an hour in the morning and two hours in the afternoon. I didn’t feel it was too much, as he slept well at night, and was much more pleasant to be around.

    He saw holes in the floor where there were none, and couldn’t find his way to bed. He had many, many hallucinations. Day and night. He saw gorillas in the back yard, and I asked him to tell me what they were doing. Which he did. He thought I was two people. (Capgras)

    I was followed around the house all the time. If I turned around he was there. At first I fussed at him to stay out of the kitchen as I would hurt him. I worked fast and got everything done at the same time.(I learned to do that for my six children).

    Finally I realized he needed me very badly and LBD was causing him to hang onto me. I accepted it.

    His driving was horrible. He was always a loving man, but I couldn’t mention his driving or attitude. His disposition changed in a flash. When he nearly had a wreck, that he saw, he handed me the car keys with no fuss.

    But, horrors upon horrors, I was told every turn, every light, every car on the road. Several times I went home crying. Finally, when he fussed at me to go to that store, which was three lanes over at a red light no less and I was in mid turn. That is when I laid the law down. I am driving and he was not going to help.

    We have been married 38 years and have a beautiful love, We are very caring and kind, but this illness has caused me to have to take hold a couple of times.

    After a few months he became accustomed to my driving and sat back and relaxed. He wasn’t hanging onto the straps or dash board or putting his feet into the floor real hard anymore.

    We had help from a daughter that did many errands for me, and some grocery shopping, and she prepared meals and put them in my freezer. That made caregiving less stressful.

    We installed burglar doors with two way locks on them, as my husband would get out of the car and direct traffic. I was concerned that he would try to direct traffic on the six lane highway next to us. He was good at taking control. He understood the locks and that it was for his safety. I hid all the large knives, and bless his heart, early on he got rid of his guns for my safety.

    When the Neurologist gave the wrong medication I knew I needed to find a better Doctor. I did. One of the best in the field. Jason Schillerstrom Md Geriatric/Psychiatrist in San Antonio, Tx. A wonderful person. Down to earth, and easy to talk to.

    He told me I did right by removing The Risperdal. He prescribed Razadine, along with more Zoloft. My, how I loved that Doctor. He was young enough to be my son, but he knew his business.

    He upped the Zoloft until he reached 200 mg. Also did like wise with Razadine until it reached 24 mg. Don stayed level for quite awhile.

    Finally my husband’s daughter, who is a nurse in a Nursing Home, told us when I thought her daddy needed the nursing home to let her know.

    I had been trying to get meals together when I had cracked my knee and was hobbling around, then decided I needed the nursing home. He was agreeable to going.

    But, oh has it been rough getting adjusted. I have moved to be near him, and do all I can to show my love and support.
    He is now at a point that he understands that is his home.

    The Doctor at this place tried the Excelon patch and it was not good. So my husband is on Zoloft 300 mg. at this writing. He can be brought to my apartment for an afternoon, and will go back. But, it took many months to get to that point.

    I hope I haven’t written too much,

    Love you Dr, David Thomas. You remind me of the Doctor we had in San antonio. Lovable and humble.


  9. Oh mercy I wrote all that and didn’t answer your questions.

    1- My husband is 74 years old

    2- Male

    3- He was 7o when diagnosed with Alzheimer’s on 2005 The doctor had the same four pages of notes I gave to the second Doctor in 2006 who diagnosed LBD

    4- Signs and symptoms, which I didn’t list, started in 1995.
    the signs were significant enough for him to loose his job.

    5- Prognosis? I hope my husband makes it for the seven years after diagnosis in 2006 with LBD. But, I don’t really believe he will.

    Normally a person doesn’t live too many years after incontinence begins, and my husband’s seems to have begun. I don’t think he is fully incontinent yet, but getting close.

  10. I too am the spouse of someone with LBD. I wish you had gotten more answers from people who actually have the disease, but here goes:
    1. and 2. My husband is 83 years old
    3. He was diagnosed in 2001 at age 75.
    4. He began to have noticable memory problems in 1999/2000. He’s a doctor. He was complaining of vision problems and also said he had a tremor. No one could find any of these symptoms. I thought he was being a hyperchondriac! He started with signs of dementia and later, maybe a few months later, the Parkinson’s symptoms became apparent. I held off giving him Sinemet for as long as possible. This was based on the idea of preserving his cognition more then his physical abilities.
    5. Without making any effort to prolong his life (took him off of lipitor and atenolol) my husband seems quite strong physically for his age. We have a full time aide during the day, a man, who helps to exercise and walk my husband for short periods of time. He has had no major illnesses, such as heart disease, pneumonia or cancer to test my resolve to preserve the quality of his life rather then the quantity. But I think the seven year limit was from a time when not as much was known about LBD. And maybe the care was not as clear. Now, most people are getting Aricept or Exelon and Namenda and people seem to be living longer.
    I hope this answers some of the questions of your survey.

  11. My husband is 78 years old. He was a practicing physician until 2003 when he retired. At that time I noticed he was shuffling his feet and having some problems driving (judging distances eg. when parking the car or driving between stone gated pillars to our drive). In 2004 his physician referred him to a neurologist (at my request). The neurologist dx was parkinsonism. After seeing several physicians, and receiving dx of parkinson’s disease, MSA and Shy-Drager, I took him to Mayo Clinic in Rochester, Minnesota. He was given a thorough workup and dx with LBD. This was in November, 2008.The doctor said he was in mid stage of the disease. The neurologist here still thinks he has MSA because of the rate of disease progression.

    My husband is 78, but was down hill skiing until 4 yrs ago. His symptoms began in 2003. Some days he is almost himself, Others he is an invalid. I cannot guess how long he will suffer from this disease.

  12. Thank you for this post. My husband and I are trying to find out what is wrong with his 84 year old mother.

  13. My dad was 78 when diagnosed. Looking back he’s had symptoms for about 10 years. Hallucinations, Restless Leg Syndrome, Eye Sight problems (but he also had macular degeneration so not sure about that one), started to shuffle and night terrors. My mom was very ill for one year (had multiple surgeries) and he was under a great deal of stress. I believe that triggered the disease to move even faster and then he was no longer able to drive which also made him extremely depressed. He needed 24/7 aides in his home for about 3 months after diagnosis and from diagnosis to death was 6 months. Yes, I said 6 months. He had been to neurologists before and they attributed his symptoms to aging so I believe he was diagnosed VERY late in the disease. He progressed so fast – he could talk fine one day and then the very next day he could no longer speak. He died last week at the age of 79. My heart goes out to all the caregivers on this forum and may you find peace. This is a terrible disease to have to watch your loved one so confused and decline from who you know them to be.

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