Expert: Mary Gordon - 9/22/2004

Question
My mother was diagnosed with early onset dementia about 5 years ago. Since that time she has had a breast lump removed and the operation seemed to accelerate her condition. In Oct 03 she had a fall and broke her hip. She was operated on and a rod was inserted. However, once again, as the result of anaesthetic, her condition accelerated even further. She spent 4 months in care but now my dad is caring for her at home. She knows who he is some days but never knows the rest of us. She can no longer walk,she cannot feed herself and is showered and toileted all by others. When asked a question she rarely answers and just stares through you. She still smiles at the grandchildren and laughs at their antics but doesn't speak many words. Maybe the odd 'yes' or 'no' and even then you wonder if she means it. She has an ulcer on her heel that the doctors say may never heal and has had countless urinary tract infections. Even though we have to feed her (most times a meal takes an hour for her to eat) she eats it all! I have heard talk of 'end stage' alzheimers and I guess my question is ...Is this end stage and if so, how long can we expect her to be with us?  

Answer
Hi Sara

I wish there was a good answer for you. 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.

The most commonly used definition of end stage is as follows:
(from the Reisberg Scale of 7 stages)

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, from your description, she is in the end stage - but she could stay there for a few months or a few years.  

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. 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.

The study found that patients with a high probability of having Alzheimer's disease tended to survive less long, about 3.1 years. However, those people who contracted dementia at a younger age tended to survive longer - and your mother falls into that category.

So, what does this mean for your situation? That there is no way to predict - not exactly what your poor father wants to hear. Although early onset AD can often progress faster than later onset AD, your mother likely is relatively healthy physically compared to an elderly person. So, the end may be years away. My mother in law was 73 at diagnosis and survived about 6 years after that. She lived for 2 years in the end stage, incontinent, unable to talk, walk, feed herself, recognize anyone etc.  

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 your father and other family members about what might come next and what the options might be. If your mother has a major illness such as pneumonia 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. 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.

The question becomes - is it kinder to let the person slip away from something like pneumonia, 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 your family knows your mother, 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.

You might also want to talk to your local Alzheimer's support organizations to connect with others who have gone through the late stages and had to make various hard choices, and also to find out about hospice alternatives as well as respite care options and other resources where you live.

This is a terrible thing for your father - and hospice might be a good alternative. His job is to love her and make sure she is well cared for - to hold her hand as the tide goes out. That doesn't mean he has to take care of her himself. As I know you know, its a 24/7 job, and can take a terrible toll on the caregiver - not what your mother would have wanted, particularly since this may go on for an indefinate time into the future.

Hope this helps - I know how hard this is, and how much you love your parents and want to do the right thing by your mother. If I was a betting woman, I would say on average...perhaps 6 months left (which guess can be wildly out) which is why its likely good to explore the hospice idea - as much for your father's sake as hers.

Mary G.
Toronto