Expert: Mary Gordon - 12/29/2004

Question
Mary,
I am responsible for an aunt with alzheimer's. This is the end of the 10th year of nursing home care. She is 89. She is now bedridden, or sits in a wheel chair. Sleeping more and more. Some weight loss. Does not communicate - except the word yes. Does not recognize anyone. This is the third long term care facility and probably the worst. Am thinking of moving her again. This time out of town - so maybe my visits will have more impact. I don't know. I am so tired of this and the long term care is not good. Help.
Pam

Answer
Hi Pam

My heart breaks for you - I've been there/done that - my mother-in-law died from end stage Alzheimers and I do remember the hard road.

AD is now considered a fatal illness, as you know. In the past, survival rates after the onset of dementia were thought to be from 5 to 9.3 years - so she's already beaten the "average". A study was published in 2001 in the New England Journal of Medicine produced some new results. Data came from the Canadian Study of Health and Aging. They tried to calculate the exact onset of dementia in 821 people over 65 years old randomly selected from 10,263 volunteers included in the Canadian study. The actual age of onset was calculated using proven clinical methods. Then these patients were followed to determine how long they survived after onset of dementia. After a careful statistical analysis it was determined that the estimated average survival rate for all the subjects was 3.3 years, much lower than previous studies had shown. This actually doesn't surprise me at all, given that having AD makes diagnosing and treating many illnesses very difficult - and many families just decide NOT to try and deal with other health issues.

I know what you are going through - just when you think it can't get worse, it does, and family members ask themselves how much longer can this go on. Just below this I've pasted the descriptions used for the last two stages of AD (developed by Dr. Reisberg, and the most commonly used set of "stage" definitions).


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., paatients 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   

So, just from your description, I would say she's in the end stage now (at least 7c), and the end is likely not far away, irrespective of the facility - no matter how well cared for she is, when they get to this point, they become very vunerable to an endless array of life threatening health problems - which raise some serious questions on not just HOW to treat them, but WHETHER to treat them at all.

I don't know if there is a way to prepare. I think when it comes to AD, the lucky ones who are those who are carried away by other illnesses - because the natural end of AD is pretty brutal on everyone, as I'm sure you have an inkling of. One thing you could do is to talk to the facility and about what might come next and what the options might be - there is very little they can do for her now, and the merciful thing is that she is likely mostly oblivious to her surroundings.

If your aunt has a major illness such as pneumonia, other infections or cancer, do you want her treated other than comfort measures (i.e. pain killers). If she had a heart attack or other sudden emergency, do you want them to try to recuscitate her - or let God and nature take their course? Did she have a living will expressing her wishes? I ask because these are things to consider, even if they seem callous.

It is very common in later AD for the person to develop serious problems with eating - they can have big problems chewing and swallowing even soft foods (their muscular coordination goes), or, like my mother in law, they completely loose interest in food (not sure if they have no appetite or just have no idea what food is). They can even start to refuse to eat (they don't seem to know what food is anymore, or feel hunger). This means you have to think about artificial feeding or IVs - or letting nature take its course, which is a very hard thing for most families. Incidentally, you might be interested in these articles on feeding tubes
http://www.aafp.org/afp/20020415/1605.html
http://www.pennhealth.com/homecare/phys_update/2004_spring.html
They may seem like a tempting solution to eating problems, but they don't appear to stop  suffering or really improve the person's condition.

I understand your frustration if she is not getting the quality of care you would wish - but no matter how she is cared for, it is extremely likely the end is very close.

The question becomes - is it kinder to let the person slip away from something like pneumonia or other infection, or aggressively treat them and keep them going (which can involve suffering in itself) and then bring them back to their steadily declining existence where they have no quality of life. There are a lot of moral and religious issues involved for many families - and only you know your aunt, what her wishes were, and also what she has left in terms of awareness and quality of life.

We were fortunate in that my mother in law had written out a living will so we knew what she wanted (no artificial or invasive means to keep her alive, no resuscitation etc.), and we had the support of the doctor, the care facility and our religious counsel, so we were personally at peace with doing what might seem a terrible thing to some people (and something that can create wars within families when there are disagreements about what the right thing to do is). We kept her very comfortable but allowed no tubes, no pills, no heroic measures. Her very gentle and peaceful end came about 6 weeks after she essentially stopped eating, no matter what we did to try and encourage her. We feel very strongly that palliative care was the right choice. You should investigate whether or not your aunt qualifies for any palliative programs that might keep her comfortable.

I hope this helps. I know how very painful the entire subject is - and how much you love your aunt and want to do the best for her.

Mary G.