Expert: Mary Gordon - 5/24/2011

Question
Mary,

My mom, 83, has been twice to her PCP. Though I'm glad I've made some initial progress with at least realizing something was wrong and getting her to the doctor, I have some concerns that her PCP isn't guiding her toward the best treatment. So far, my mom has had some blood work, a B-12 shot, and multiple samples of Namenda. I keep hearing about how well it works with Aricept but no mention of that yet. Do you think her PCP is waiting to see how well my mom responds to Namenda first? Also, no mention of a neuro. assessment yet. It just doesn't seem to make sense giving meds without an assessment first, but I'm sure though her PCP has enough reason to believe she is in the early stages and perhaps it wouldn't cause any harm even if she didn't need it. I guess I'm going to have to take more of a lead in my mom's treatment. My parents live in a small town in north Georgia and I just don't want to cause unnecessary traveling because of her arthritis.  I've heard that once a neuro. assessment is done that her PCP can pretty much take up the lead again.

Answer
Hi Jeff, I would ask for a referral to a neurogist with a dementia specialty right away. There is no purpose to a delay. You need firm answers including a prognosis (which will depend on the diagnosis). You also need an expert who can answer family questions and provide the most current advice on recommended treatments.

There is no point to try out medications until you have a proper assessment and diagnosis. There are many causes of progressive dementia, and it is quite possible to have more than one happening at once. A proper neurological screening will give you more information on what is going on and what you can do about it.  

Incidentally, at this stage, your mother has the most to preserve in terms of cognition and quality of life, so if ever there was a time to throw whatever modern medicine has to offer at her illness, this is it (i.e. if it were my relative and it was confirmed this was Alzheimer's, I would want combination therapy ASAP).

Unfortunately, as you observe, you will probably have to step up and take a lead. Your mother will not necessarily tell the doctor everything she should, much less recall everything she is told - and she may be lacking self insight (i.e. she may not even be aware of her own symptoms that are obvious to others). She may also be in denial, and incapable of initiating all the actions that must be taken - and the same may be true for your poor father. There are a lot of things to think about, now that you all have a very strong indication she has something serious in terms of progressive dementia.

You will want to ensure that your parents have valid powers of attorney in place for both personal care and financial decisions naming you or other family members as their substitute. Are their wills up to date? Do you have signed permissions to speak directly to their doctors about what may be going on? The latter is VERY helpful. Since you don't know exactly what she's got, I would take this window of opportunity to get your parents affairs in order as much as you can, as your mother may not be legally able to sign documents shortly.

Do you know where all their assets are? Do you know about their insurance and pensions? Are things set up to make them understandable and managable if/when you have to step in?

Since you are in the US, I would very strongly urge you to get your parents to an attorney who specializes in estate planning and medicaid planning. As you know, dementia care can be extremely, extremely expensive, and the laws around medicaid and medicare are convoluted and vary from state to state. You can preserve a lot of your parents assets for their benefit and care IF you get a good understanding of look back periods etc. where they live, and get expert advice on planning.
This is not something to try and figure out on your own. It's a minefield.
http://www.georgiahealth.us/medicaid-planning
http://www.caregeorgia.org/list18_georgia_elder_law_attorneys_lawyers_medicaid_a...

I would also start to think seriously about the future in terms of where they live. If your mother has Alzheimer's, this will progress relentlessly. Can your father cope with the emotional, psychological and physical burden ? Do they live close to services and family or friends who can assist? What programs and supports might there be available to them where they are? Is it time to start thinking about a move?

When you do have a diagnosis, you can go back to the PCP but with a proviso. How current is his knowledge? How proactive is he? How insightful is he? Is he a good listener and easy to talk to? If your mother develops emotional issues and behavioral problems (very common, even in early stages), can he adequately assist and deal with them? Does he know a lot about dementias? Can he provide your father with the support and advice he will need?

This will be much less stress for everyone in the family if it is actively dealt with, so you know exactly what is going on, know what to expect may happen next, and have made some good plans for the future supported by expert advice. This may sound alarmist, but you are likely looking over the edge of the cliff, and active steps now will save you a lot of grief later. Much better to plan for worst case, and then be pleasantly surprised when you can let your contingency plans sit for longer than expected, than to be complacent and be plunged into crisis because you haven't anticipated issues.

Hope this helps.

Mary  
Hope this helps.