Expert: Mary Gordon - 11/9/2008

Question
My mom is 78 now. She has had Alzheimer's for about 18 years.
She did a lot of crossword puzzles and word searches during these years and the doctor feels this has slowed the progression. She is in a private care facility in Red Deer,Ab.
She is sleeping more and more and can't seem to stay awake during the day. When I go at night to watch TV to be with her she stays awake and watches the TV though I doubt understands much. She has also stopped talking, giving answers. Is this sleeping more and more normal and part of the progression? Since she is sleeping so much now would it be just as well for her to be in a smaller private facility
with fewer organized activities? They say when they take her to an activity in the building now she goes right to sleep. She is in a wing with about 50-60 patients, a 12 to 1 ration caregiver to patient. Today I went and they had made her bed right over the peed sheets. The place I am thinking of moving her to has a 1 to 4 ratio, does end of life care, but no organized activities like bingo, entertainment brought in, etc. I am thinking that might not matter so much now. She is also more and more incontinent, especially urine, and has been getting frequent UTI's. Any thoughts?

Answer
Hi Diana, given your mother's very slow and atypical decline, it may be possible that her dementia is from some of the many other causes than Alzheimer's. Alzheimer's is an organic brain syndrome that causes global brain damage - and doing crosswords won't really slow down the process, no matter what the doctor says. It is not a disease of disuse - if that was true, we'd see a population of educated professionals who got dementia at a much lower rate than the rest of us. Its an equal opportunity blight, no matter how much or little you use your brain.

As most dementias progress, the person's diurnal rhythms do get disrupted. I'd ask the caregivers about what is going on at night. If they are having to give her drugs to sleep through the night, or get her to sleep in the first place, they might want to make more of an effort to keep her moving and engaged during the day. Sleeping during the day can often lead to disrupted rest at night.

At my mother in law's specialized Alzheimer's ward in Toronto, they actually banned TVs - just because the residents would zone out or drowse in front of the flickering set, instead of moving around, engaging in activities or even interacting with each other.

The activities she really needs now are probably quite simple - and there are lots that can be designed for dementia patients. Perhaps some walking around the halls, some simple arts and crafts, listening to music, throwing a ball around to get some exercise. Here is a list of very simple things that can be done at home, and can spark some ideas for a facility. http://www.ec-online.net/knowledge/Articles/101things.html

Here are some sample ideas for a facility
http://www.theactivitydirectorsoffice.com/Gina_ActivityIdeasThatWork_Alzheimers....

So, the new place doesn't necessarily need bingo or entertainment, but they should be trying to keep her at least somewhat busy and moving around a bit, and awake during the day, and try to keep her to some sort of routine. My personal take is that the TV can be a real negative, and will contribute to physical deterioration (i.e. her muscles will deteriorate faster, including her balance and coordination, and she will stop walking and even feeding herself sooner than she has to).

I do think its a major concern that they are not dealing with her incontinence appropriately. The wet bed should be changed, and it makes me wonder how well they cleaned her up before dressing her in the morning.  You are also correct that the ratio of caregiver to patient is far low for proper care for someone in mid to later dementia. Her care will be physically more difficult here on in, and the other facility will at least have the staff to begin to cope with looking after her properly - some dementia units actually have even lower patient to caregiver ratios.

Not only will her urinary incontinence become worse, but fecal incontinence will follow.  They need to keep her really clean and make sure she is drinking enough fluids to keep things flushed out. You probably know that UTIs will make a person with dementia seem much worse - much more confused, and out of it than when they have no infection. That alone could be making her sleepy.

Having said all that, as the disease progresses, many people do sleep more and more - but my first suspicion would be that she's being allowed to sleep during the day too much at this stage. I'd also wonder what drugs they have her on - some of them may be making her really dopey. It's worth reviewing them with the doctor to see if she needs them all or if dosages can be cut back on some to see if she wakes up a bit more. Also, I'd ask about the strategy to get on top of the UTIs which may also be contributing to her deteriorated mental state and drowsiness.

Hope this helps.

M.

Below are the most commonly used descriptions of the last two stages (from Dr. Reisberg)

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 orient in 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