Expert: Mary Gordon - 8/3/2007

Question
Dear Mary, My Nan is 86, we have noticed that she has become very "forgetful" over the last year.  It seems mainly her short term memory and when we are having conversation she will repeat herself over and over.  other than this she seemed fine in all other areas. However,  over just the last two months her condition has deteriorated dramatically. My nan now thinks that her husband is her father and calls doesn't seem to remember the man she married.  She can remain like this for days at a time and then she seems to "snap out of it" again, an then the cycle continues.  My Grandad got a referral from his GP to see a specialist for suspected dementia.  However, he can not get her in to see one for approx 3 months (even the private system is giving him the run around).  My concern is that he is her primary care giver and they live by themselves and without a diagnosis they will not be able to get any help!  I am worried that my nn my deteriorate even more in the meantime an I am worried about my her safety and  also about my grandad (he is so upset that she doesn't remember him when she seem to remember everyone else).  Do you have any advice for us and about getting help and do you have any ideas about what kind of dementia this is and if delayed treatment will affect my nans condition.  Also once diagnosed will medication help my nan remember my Grandad??????? Thank-you!

Answer
Hi Danielle

There are many health issues that can affect cognition in the elderly. Some are reversible, some can be slowed down, and since families need to do planning and be ready for what can happen, it is important to get a diagnosis. The who most common types are Alzheimer's disease and "multi-infarct" or vascular dementia, caused by mini-strokes. I should warn you, what's going on with her does sound like one of the progressive, incurable dementias like Alzheimer's or multi-infarct. It is also possible to have more than once cause of dementia going at the same time.

Can the family doctor not assist? She could try a course of Aricept or better yet, the combination of namenda and donezpezil to see if that helps, while she waits for her appointment with the specialist. Lay siege to the specialists office looking for a cancellation (call them and bug them) You need answers.

Be ready though for the news not to be good - it is very likely that this is something that will continue to progress.

The normal deal is to start with the family doctor to do a full physical and order basic tests to rule out various health or dietary issues like thyroid and anemia (the B12 deficiency kind called pernicious anemia). A family doctor can also order a brain scan to look for strokes and tumors. If you have to wait for the specialist, see if the family doctor can use the time to get as much ready to go in to see the specialist with. Your grandfather should also write out something about her medical history, all her medications, dates of surgery, and details of her symptoms. He's going to be asked a LOT of detailed questions, and may not remember everything they need to know.

On the legal front, prior to an actual diagnosis, it is very important that someone in the family ensure that your grandmother's affairs are in order because as you can appreciate, if she has a dementia, which seems very likely, her ability to sign legal papers will be gone very soon. Someone in the family must have a valid power of attorney for her for both financial and health matters, even if your grandfather is in good shape, just in case something happens to him. Her will should also be up to date. If you are in the US, it is also absolutely worth seeing an attorney about the medicaid rules, to protect your grandparents assets. The average family who consults a lawyer about estate planning saves 60K, which is important when your grandmother may need nursing home care, and your grandfather will need funds remaining to help with his own future needs.

Another first step for the family is to purchase a good general book on dementia. A useful title is the 36 Hour Day by Mace and Rabin, published by Warner (and available in inexpensive paperback - if you only get one book, this is the one that will help you all the most in terms of understanding what she does and how to react.

Below my signature I have pasted the stages of Alzheimer's - not all causes of dementia follow the same path exactly, but its fairly typical of most progressive dementias. Fluctuations from day to day and week to week are normal. Medication may help her hold ground, but be prepared for her to continue to slip. Your grandfather will NOT be able to do this alone, and incontinence is part of the progression, so he won't be able to manage. Start planning now for your alternative, whether that means moving them close to other family, into a family members home, or into an assisted living seniors complex where help is available. Looking after a person with a dementia is like looking after a baby - its 24/7 and relentless. They can't be left alone for a minute.

Hope this helps. I know this is upsetting, but when you know what you are dealing with, it will be easier to make good plans. A good assessment from the specialist will also cover her deficits. I would not be surprised if she was much more impaired than is obvious in a social interaction. In order to have realistic expectations of her abilities, you need to know where she is impaired. These dementias don't just impact memory, but judgement, reasoning, emotional control, muscular coordination, ability to recognize people, places and things, ability to speak, depth perception etc. etc. Brain damage is irreversible. The medications can help what is left function better for a time, but they do not reverse the damage, and they cannot prevent the progress of the illness.

I'm so sorry you are all going through this. See if you can't help get that appointment moved up.

Mary

Stages of Alzheimer's

In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of Alzheimer's disease. Even today, years later, when experts refer to a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's scale of seven stages.

Adapted from Reisberg, B., Ferris, S.H., Leon, J.J.