Expert: Mary Gordon - 12/24/2007

Question
Hi Mary,

My mother was diagnosed with end stage lewy body dementia on October 2005 after she started exhibiting the Parkinson's side of the disease. Several years prior to that, she exhibited the AD side.

My siblings and I are trying to plan for her ongoing care. Would you tell me what end stage lewy body dementia looks like? It's a question that we are afraid to ask.

Thanks so much.

Answer
Hi Kate,  - this must be a tough thing to deal with during the festive season.

Everything I've ever read about Lewy Body says it ends up in the same place as the other progressive dementias. The disease is a relentless slide downhill, and the dementia becomes global and severe. Eventually the person becomes profoundly demented and immobile. This is no different than the end stage of Alzheimer's where the person loses all speech, can no longer walk, sleeps all the time, doesn't know anyone or where they are, are incontinent, and have to be carefully hand fed.  It will sound cruel, but the lucky ones usually succumb to pneumonia or intercurrent illness (i.e. some other health problem carries them off, in part because the dementia makes it difficult to diagnose or treat other problems - or the family decides it is kinder NOT to try, other than keeping the person out of pain). As I know you suspect, the loss of muscular control leads to problems with chewing and swallowing, and issues getting enough calories and nutrition into them. They get weaker and thinner and more and more susceptible to respiratory infections etc. With Lewy Body, the average person lives seven years from diagnosis, but many live longer.

I know this is horrible to contemplate. She eventually will be bedridden, and not even be able to sit up or hold up her head without being propped. My mother in law survived two years in the end stage of AD. She was robustly healthy other than her Alzheimer's. What finally happened is that we elected palliative care when she stopped eating no matter how much she was coaxed. She didn't seem to know what food was, or feel hungry. At that point, she was totally helpless, and oblivious to what was around her - so no quality of life at all. She had left a living will and we already had DNR orders on her, but they did ask us if we wanted tubes etc. when she stopped eating and drinking. We just decided that as long as she was comfortable and not in any pain or suffering, enough was enough - we kept trying to feed her by hand, but we did not allow IVs or tubes. It is not a decision we made lightly, and we feel strongly we made the right call for  her. Hospice workers were wonderful (your mother may qualify when she reaches the point a doctor feels that death may occur in the next six months).

It's brutal - I can't tell you it isn't. I do think though it is hardest on the loved ones, as the brain damage mercifully seems to keep the person from realizing what has happened to them. They don't seem to feel things or be aware of problems the way a normal person would. It will be hard on you, no matter how you approach it. Making life and death decisions for someone we love is gut wrenching. You and your sibs are doing the right thing to talk through how you will deal with what may lie ahead. Palliative care is often the right choice, since the goal is to have the best possible quality of life, the most serene, gentle, peaceful environment, no pain, no distress, no running around and poking and prodding.

Hope this helps. Below my signature I have printed a description of the last two stages of AD, which resemble the end stages of all of the progressive dementias.

Mary G.

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of
action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control.
The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently
present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost