Any way to find out more about my Dad's diagnosis? Is it worth trying?

[marthaNH]

I have been wondering for a while what my father's diagnosis was based on and whether anybody ever did any genetic testing on him. At one point they said Alzheimer's, but the death certificate just said terminal dementia or something else non-specific. By the time that last doctor got him as a patient there was no point in any more tests. He was symptomatic (unable to spell, getting lost, asking his grandchildren what he liked on his hamburger) by the time he was 76 or 77 or so, had no idea who I was by 82, institutionalized right after that. Lived another seven years, better not gone into.

Just wondering if anybody with more knowledge could give me some idea what might be in old charts that might help me piece it together. His first doctor was a close friend who would help me if I knew what to ask him. I think. He's retired now, so who knows what records he still has access to.

With a 3/4 status myself, siblings that don't want to know, and zero dementia on my mother's side (which includes 6 brothers and sisters all in their 70s and 80s) I would really like to know more about what he had. If he was a 4/4, there might be a little comfort in that. I could hope that as a 3/4 I might do a bit better. If he was a 3/3 and the diagnosis was questionable at all, I could find a couple good things in that, too, maybe. At least my sister and brother might have missed the gene entirely. And maybe even there was another source of his trouble altogether, not even genetic. If he was a 3/4, then, hm, I'm about where I am I guess, but inclined to plan for trouble earlier on. He had no diabetes, was not overweight. Only risk factor apparent was his age.

This actually may matter a little bit in a practical way as I have limited wiggle room in my old age financial plan and would like to put my plan together in a way that protects my relatives. I am not into denial. I used to like it but it quit working for me. (Grin.)

Sorry if this is a little bleak-sounding. Thinking about my old man's later years makes me sad. But I am actually doing pretty well and am not in need of comfort, just guidance on the medical records if anybody has any to offer. Oh, as to type of medical people who might have seen him -- there's a possibility he was sent to Duke or Medical College of Virginia at some point for a consult. That would not have been unheard of. That's where he sent his own tough cases. Close by. Otherwise he was treated by internists in private practice. Rural south, yes, but not idiots. I should know more, but he had a tendency to circle the wagons and not share much. Also he remarried and I was far away. Fairly early on he just didn't like struggling to talk on the phone anymore.

Thanks guys. I haven't been very chatty lately but I do drop in and enjoy everybody's company now and then in a quiet kind of way.

[Julie G]

(((Martha))) I know you're not looking for comfort, but as a friend I remember how raw this was for you when we met up last year. It's not even been a year... I can imagine it's still so hard.

Why NOT simply ask his docs for his records? If he was sent to a major medical facility, they could have done ApoE testing and more. You may find some other important clues to help you better protect yourself and plan for the future. I think the biggest risk here is an emotional one. If you feel strong enough; go for it. XO

[Stavia]

Honey I agree with Julie.
Hugs xxx

[SusanJ]

Never hurts to ask, especially if there were specialists involved.

Be prepared for encountering the approach that once a person reaches a certain diagnostic criteria for AD, a doctor might not test further, especially since most doctors feel that there is nothing that can be done.

I do hope you find something useful in your quest.

[RichardS]

I lost my dad to AD 2 1/2 years ago and remember thinking about this issue, as well.

I don't think at this point that tracking down his apoe status is the top priority. If anything, I would want to focus on vascular risk factors like high blood pressure, diagnosed or suspected strokes, transient ischemic attacks (strokes that resolve very quickly), sleep apnea, sudden declines in cognitive functioning (especially if in a stair-step fashion) and so on. I think it would be instructive to seek these out and, especially, to look at the time course to see if they were identified before or in the early stages of the dementing process. What is called "mixed dementia", typically a combination of vascular and Alzheimer's, is actually quite common according to research and, IMHO, under-diagnosed clinically. Given that we have a lot of options for keeping our blood vessels healthy, it might be comforting to discover a vascular component of your father's condition. That was true in my father's case.

As for the death certificate identifying "dementia", my understanding is that it is common to use the dementia label in lieu of Alzheimer's in that it is still accurate and that a lot of clinicians stick with the long-standing opinion that Alzheimer's cannot be definitely diagnosed until autopsy of the brain confirms it.

[marthaNH]

Lots of thanks, Richard, Susan, Stavia, and Julie.

[Tiramisu1984]

Martha, you have inspired my brother and me to have my mom's APOE status tested while she is in hospice, so thank you. We are sure that E4 is on her maternal side (my grandmother and my mom's maternal cousin as well as my mom). This question is whether she is E3/E4 or E4/E4. I think I will also have her cholesterol levels checked too.

Thanks and best wishes in your journey. Chandra

[Nords]

This actually may matter a little bit in a practical way as I have limited wiggle room in my old age financial plan and would like to put my plan together in a way that protects my relatives. I am not into denial. I used to like it but it quit working for me. (Grin.)

First, I think your relatives would prefer that you spend your money on your quality of life. They'd hate to think that you scrimped or even sacrificed your lifestyle just to improve theirs... once you've finished raising them, anyway.

Second, your father's diagnosis might no longer be relevant to your financial plans because it wouldn't change them. Would you do anything financially different if it turned out that you did not inherit his genes?

It's probably better to make a financial plan that both protects your relatives and assumes you'll eventually show symptoms of dementia. That's my plan for my Dad's finances, and that's the plan my spouse and I have for our finances.