AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question Hello Mary,
My 83 year old father has a cognitive disorder, but I have yet to get a real diagnosis as to what it is. I don't think his physician even performed an MMSE. One minute she says Dementia and the next Alzheimer's. My Dad lives in a small rural town and the medical community there is limited in knowledge and proper care. I have tried to find doctors in the Houston, Texas area that specialize in Alzheimer's and related diseases, but I always end up being referred to Psych units and assisted living facilities. I need a diagnosis, not a watering hole to plop my father in. I have been doing a lot of research and have noticed that different treatments options do not react the same on all cognitive disorders. I would like to have a better handle on his problem before I weigh the options. I know there is no way to diagnosis Alzheimer's (beyond an autopsy) but surely there is a more definitive way to get a diagnosis besides a guess and a smile. Please help!!
Answer Hi Gwen.
The term "dementia" is not a diagnosis, as I know you realize. It is a term like "fever". It describes a set of symptoms but not what is causing the symptoms. Essentially, the label means the person has some cognitive impairments that are interfering with normal life - but it could be from anything. A dementia is always caused by some underlying disease or injury - and that is the part you need to know in order to know what to do about the situation.
What you are describing could be the early stages of Alzheimer's (the most likely explanation) but it could be a lot of other things. Alzheimer's is only diagnosed by ruling out everything else it might be. Confusion and memory problems can stem from small strokes (so small the person may not show other signs of stroke), drug interactions or side effects, thyroid problems, pernicious anemia, depression - and a stack of other things. So, the first step is to make sure your father isn't suffering from some other problem that might affect his memory - especially if the "something" might be treatable.
Have you tried contacting Baylor in Houston? They have a Alzheimer's Disease and Memory Disorders Center that seems pretty comprehensive http://www.bcm.edu/neurology/admdc/
A good assessment includes a full physical with assorted blood tests, some psychiatric evaluation to rule out depression, a review of history and medications, a neurological work up, usually including a CAT or other brain scan to rule out strokes, tumors etc. Usually a family doctor will refer the person to a psychiatrist with a geriatric specialty, or to a neurologist with expertise in dementias. The fact he has not done so seems to me to be negligent and irresponsible given that Alzheimers is not only a progressive and incurable neurological disease, but one that is considered to be a terminal illness. It's not like other illnesses.
A good assessment will also check out the extent of your father's deficits. Alzheimer's doesn't just affect memory. Because it affects the entire brain, reasoning, judgement and personality can be affected early in the disease. Things families notice first often include memory lapses, trouble with numbers or time, getting disoriented in familiar places (i.e. getting "turned around" on the way to the store), trouble thinking of words, asking the same question repeatedly, getting upset easily or frustrated, changes in routine (i.e. they sometimes stop participating in things they previously loved), difficulty solving simple problems (i.e. not being able to figure out what to do when something goes wrong).
My mother in law was referred to a psychiatrist with a specialty in geriatric dementias, who happened to work out of a specialized dementia unit at a major hospital. He arranged for the kind of testing you might put a child through if you were trying to evaluate learning disabilities - the person who administered the evaluation was a psychometrist. My husband went with his mother - and the outcome was completely shocking - but at the same time, very useful to us all. The testing revealed very graphically that she was very much more impaired than any of us realized, and on more fronts - even her depth perception was impacted. She could carry on a very good social conversation at the time, and was very charming, so she was able to cover up many of her deficits in day to day interactions. The testing was upsetting to us, but it jolted us out of denial. All of a sudden we found ourselves up close and personal with the full reality of what was happening to her. The other great thing that this doctor did for us was to refer us to a specialized social worker whose area was geriatric dementias. She was amazing in terms of being able to steer us to supports and services. She knew the ins and outs of every program and facility going, and what my mother in could qualify for and when.
Clearly, something is really wrong - and both of you need to know exactly what is causing the symptoms you are seeing so you can figure out what you can do about it - and also make plans for what will happen next. There are medications that can slow down the disease in some people in the early stages, and others that improve mood, reduce anxiety, delusions etc. - but to get the right meds, you need to know what you are treating - and I know you know all that. If your father is living alone, you will have to start making plans for other arrangements shortly, because if he has Alzheimers, it is a one way street down hill, and he will likely need supervision and support in short order. Certainly legal things like powers of attorney, wills etc. need to be in order, and steps taken to consolidate his finances to permit you or someone trusted to manage his affairs when he reaches the point he needs help with them (probably not far from now). I also would get myself in to see a lawyer as soon as possible to consult about estate planning in light of the very convoluted medicare/medicaid rules in the US. I know you will want to protect your father's assets for his care.
