Expert: Mary Gordon - 8/8/2009

Question
QUESTION: Hi,
 My 72 yr.old husband displayed some cognitive impairment that I asked him to mention to his doc. Occasional memory lapse and diffculty with new technology mainly. MMSE score 26. Well-educated man with a Ph.D. CT scan shows some brain shrinkage. Neurologist suggests MCI on the way to Alzheimer's.
  However, husband has severe hearing loss and even with an aid he needs things repeated slowly. English is his second-language. Thus, when the test asks what an acorn is, for example, he says nut--he never knew the name of this object in the first place. Same with a pelican. He never knew that word. He said it was a bird. Same with some of the task questions. He never saw a worker with a sawhorse, for example, and probably wouldn't know what the picture was. He was asked to name as many words starting with F as possible. He couldn't get very far. I don't think he would have done much better twenty years ago. His English recall vocabulary is imited though his recognition vocabulary is large. Could these factors be a test bias that might cloud the picture?
 He has been a moderate drinker for years. There is no Alzheimer's in his family or extended family going back generations. Do I need to be careful in accepting this diagnosis, joining clinical trials, or anmnouncing it to the world? Thanks so much.

ANSWER: Gail, if I were you, I might not tell friends unless impairment is becoming obvious and they need to alter their expectations of him.

Generally, for an educated man of his age, 26 is not a terrible score - it's a borderline finding, particularly since English is his second language and he is hard of hearing. It is not the only cognitive test available, and I would ask for a more comprehensive assessment. When my mother in law was diagnosed, they sent her to a psychometrist for a comprehensive battery of cognitive testing, very similar to what they would put a child through when looking for learning disabilities. That gives you a much clearer picture of exactly how impaired a person is, and in what areas (since not all areas are affected at the same rate. I think this will give you more comfort in what the doctor suspects. Certainly the brain shrinkage is a worrisome indicator, and you would not have mentioned your suspicions to the doctor unless the alarm bells were going off in your gut.

Keep in mind that for all of us, no matter what our family history, risk of dementia from some cause goes up with age. If you are lucky enough to live to be 85, your odds are 50-50. My mother in law had no Alzheimer's in her family either - but both she and one sister developed it in their 70's. There are also many, many causes of dementia. The brain is a very delicate thing, so it isn't surprising it is vunerable to damage over time and with all the health issues that can develop with age.

I would ask to be referred to a specialist in dementia if possible. Sometimes this is a neurologist with a specialty, sometimes a geriatrician, sometimes a psychiatrist with a dementia specialty. You need someone  very knowledgeable and the family doctor may not cut it. You can get him to review what tests have been done for a second opinion. You need someone who is up on the latest research, who can advise you on any behaviors and problems that may develop.

For your own protection, I would assume that he has a progressive dementia, and plan accordingly. If you have not already done so, I would see a lawyer with a speciality in estate planning. If you are in the US, this is particularly crucial, since preplanning can save you thousands of dollars should he someday need expensive care. You need to have his legal affairs in order, and understand all the insurance rules applicable to your location, from any private policies you may have, and the medicaid or medicare rules where you live (they vary from place to place). You need a lawyer to tell you what needs doing to protect your own future - i.e. to preserve as much as possible for your own senior years, in case his care is hugely expensive and draining on resources.

I would also ask about getting him on combination therapy as soon as possible. Now is the time when he has the most function to preserve, so now is the time you really . Ask your doctor about Namenda in combination with Aricept.  Here is an article on this approach http://www.sciencedaily.com/releases/2008/09/080922122510.htm

Hope this helps.

Mary G.

---------- FOLLOW-UP ----------

QUESTION: Mary,
 Thanks so much. He saw the family doctor and then a neurologist looked at the scan and did his own test--a bit longer than the MMSE but not more than say 15 or 20 minutes. The family doctor(an internist) said very mild and didn't want to go as far as the AD diagnosis. The neurologist was more certain and said MCI and probably AD. Would you suggest going further as far as doctors are concerned? What do you think about joining a clinical trial at some point even if there is litle change in his condition?  Gail

Answer
Hi Gail - it doesn't sound too positive. I know this is heartbreaking, but it does sound like a reasonably thorough job was done in assessing him.   Unlike most areas in life, when you are faced with a probable dementia diagnosis, it pays to be a pessimist. I'd be inclined to believe the neurologist. Neurologists won't apply the "probable Alzheimer's" label lightly.  

Doctors like the internist may try to spare your feelings by not saying the "A" word, but in the big picture that may do you and your family no favors if it means a delay in tackling necessary preparations and plans.  

I say that not to be unkind, but because you should plan for worst case for your own health, sanity and self protection. Even if the idea of him becoming impaired is unthinkable, get your legal affairs in order. Do your planning and research right now so you are ready for anything. Figure out what the supports and services are where you live, what you might be eligible for, where you could get help. Find out what there is around you in terms of dementia care, whether it's help at home, adult daycare, respite care, or longer term care.

If you make no plans and preparations, you can easily end up in crisis - and there is nothing worse than being in a very stressful situation and not having any idea where to turn for assistance. You also want to be able to make choices based on what you think is best for your husband and your family situation. You want to be "in the drivers seat" and you both want to preserve your independence. That requires some research and pre-planning. And then, if his impairment plateaus for a time, or progresses very slowly, you can be pleasantly surprised and relieved you don't need to activate any of the plans in your back pocket just yet.  Assume that right now is as good as it's going to be, and that it will get more and more challenging.

Clinical trials are a wonderful thing - but they are really not for the benefit of anyone with the illness right now. If you join a trial, you have to realize that you are contributing to future treatments and knowledge - which is a wonderful and noble thing.

Almost all trials use double blind approach. Neither you or the research assistants will know if your husband is getting the experimental treatment, or if he is just getting sugar pills.  They do this so the research assistants can be very objective about cognitive and behavioral changes in the person (i.e. not overly optimistic or pessimistic because they know which treatment group the person is in). They don't want any bias to creep into the results.

Right now, the best shot out there is combination therapy, and if it were my loved one, I wouldn't skip that proven option for a research study. The combination therapy does not stop Alzheimer's from progressing, but it can slow it down considerably in many people. Usually participating in a study means the person can't be taking other therapies.

I'd also look at this time as a window of opportunity. I know when you are in distress, it is hard to see an early diagnosis as a gift. However, knowing what is likely to come, not only can you plan well, but you can take advantage of this time when he is still very much himself and able to do so many things. Seize the day. If you and your husband have things you have always wanted to do, such as a special trip or project, now might be a good time. Are there lifestyle changes you want to consider, to simplify your lives, or make things more convenient - or even to move closer to family?  Today is what you've got, and tomorrow is uncertain.

If you are very interested in the state of the science of MCI and  early Alzheimer's, here is a book you may be interested in.
http://metapsychology.mentalhelp.net/poc/view_doc.php?type=book&id=5007
It is not inexpensive (in hardcover, from Amazon, its about 65$).

A book that I have found very useful in coping as a caregiver, and in understanding many of the challenges and issues that go with any form of cognitive impairment is this one
http://www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias/dp/0801885094/ref=
The fourth edition is the most up to date one. This book is absolutely terrific and very, very helpful.

Hope this helps - and that I haven't made your burden heavier. I know this is devastating. Taking some action will relieve at least some of the apprehension and stress because at least then you won't be worrying about what you might need to do - you will be as ready as you can be. Then at least you can relax a little  and concentrate on your real job - which loving your husband, and looking out for him, no matter what comes next.

I'm thinking of you.

Mary G.