Expert: Mary Gordon - 2/23/2011

Question
My mother was diagnosed a year and a half ago and is currently 57 years old. She matches all the symptoms of stage 5 and 6. We have a part time care giver now, but my father is the primary care giver. My question is what an average life expectancy for an alzheimer's patient is when diagnosed so young, and also, what the likelihood of me being diagnosed is.

Thanks!

Answer
Hi Allison, it's often really hard to predict how long a person will survive - and this is especially true for people with early onset-Alzheimer's.

When a person is elderly, they are often frail and have all kinds of complicated health issues. Health problems can be very difficult to deal with in a person who is also cognitively impaired. Many families decide a certain point that putting a loved one through tests, treatments, therapies and procedures that might be scary, bothersome or painful is not worth it - particularly when the dementia itself is a terminal illness, and their lifespan is already so limited. Families often decide the person's comfort and serenity is more important than trying to extend their life by tackling other health problems. For example, if a person is 85 years old, and has dementia, and then develops heart problems, it may just not be worth making the person miserable with medical interventions that could reduce their quality of life even though they may extend the length of their life.

Because your mother is so young, she is not likely to have these kind of serious chronic health concerns. She is more likely to die from end stage dementia - and that can be a slow process in an otherwise healthy person. There is a perception that the disease progresses more quickly when it is early onset, but this is not borne out by research. It may just seem faster because it is so much more devastating to a person in middle age who still has active work and family responsibilities.

In an older person, survival is often 3 years or so following diagnosis because of their overall age and health. For your mother, it could be as long as another 5 or 6 years, or even longer, and many of those years will not be happy ones. Not necessarily what you want to hear.

Even with later onset, they can survive some time - my mother in law lived 7 years dying just before her 80th birthday. The last two years of her life were in a heavy care nursing home, as she was unable to walk, talk, or do anything for herself.

Early onset does sometimes run in families. Many people with early-onset Alzheimer's have a parent or grandparent who also developed Alzheimer's at a younger age. You know your own family and whether this has happened. If you do a family tree and can figure out causes of death for prior generation, you may be able to spot people who weren't diagnosed years back but may have had it. Look for instances where someone might have been institutionalized as "crazy" or who had to stop working early but no one will say why (i.e. in the past, sometimes these things were hidden).

About half of the cases of early-onset Alzheimer's are linked to three genes. These three genes are different from the APOE gene — the gene that can increase your risk of Alzheimer's in general. But you can have the APOE gene and never develop Alzheimer's. Conversely, you can have Alzheimer's and not have the APOE gene. The genetic path of inheritance is much stronger in early-onset Alzheimer's. If you have one of those three genes, it would be very unusual for you not to develop Alzheimer's before age 65. If you think that early onset runs in your family, you may want to get genetic counseling which may include considering whether or not genetic testing makes sense.

Having said all that, quite often early onset can be sporadic - just one of those random things. Many people are not aware that for everyone, irrespective of family history, the odds of getting some kind of cognitive impairment go up with age. If you are lucky enough to live to be 85, even with NO dementia in your background you still have a 50-50 risk of getting some form. The brain is a very delicate thing, and all kinds of chronic illnesses can impact cognition,  as well as the many causes of incurable and progressive dementia.

I'd suggest you see your doctor to get some genetic counseling. It's always better to talk to an expert and deal with facts, rather than torture yourself with fears.

I know it is heartbreaking, and what is happening to your mother  must be so, so devastating to your whole family.  I really feel for you.

Mary