Question about genetic risk and prevention

kvhs · December 2024

Hi, all. Sorry that we're all here because of this horrific disease. I have quite a bit of dementia and alzheimer's in my family, I'm trying to understand my genetic risk and any preventative measures I can take.

In my family both of my maternal uncles, one of my mom's first cousins, my mom's grandmother, and my mom's aunt and uncle all have had some type of dementia, mostly alzheimer's. Two of those people (of the six) had early onset, around age 62. One way I think about this is my mom's father had two siblings; my grandfather has two out of three kids who had dementia, his brother who had it has one of his three children who have had it, and his sister also had it, her two kids seem okay for now. And his mother had it (my grandfather died of cancer).

My mom died when I was 12 from a brain tumor and I've never met my biological father, so I can't really say if I have an increased risk from an immediate relative. According to 23 and me I do have a slightly increased risk of late-onset alzheimer's, I have the e4 gene.

I know that with my family history and my 23 and me result I have quite a risk, but I'm wondering how much of a risk (if that's even possible to know) and what I can do to try to prevent the onset or at least delay it.

Yes, I am also going to speak to a medical professional about this but I wanted to know how other people have dealt with this dilemma. Thanks a million.

SusanB-dil · December 2024

Hi kvhs - I think a lot of us on here, who are the kids, know that we MAY have an increased risk.

Personally, I try not to think of it very much. My grandmother had early-onset, and had 3 daughters, one of course, being my mother. Mom has later-onset, but the other two sisters, not. Her older sister died of pneumonia at 87. DH mother has later-onset, but same situation, her other two sisters do not.

So - all I can do is eat healthy, stay active (yeah, I do need more exercise), and not dwell on 'maybe'. (also never smoked)

SDianeL · December 2024

there is so much they don’t know about the disease. I asked my husband’s Neurologist if there was anything we could do to slow the progression and she said no. I would look at any medications including over the counter. Benadryl for example has been studied. I would ask the Neurologist about other tests and perhaps find a memory clinic where they do research. They may have more current info and drug trials. Meanwhile take care of yourself the best you can.

Carl46 · December 2024

50 years ago, an old man whose wife had dementia advised me to live my life as best I could while I was young, because a happy old age was not guaranteed. I did my best to follow that advice. Now that I am old man whose wife has dementia, I am glad we didn't wait for "golden years" to enjoy life.

Work hard, play hard, eat your veggies. Don't worry any more than you can help.

harshedbuzz · December 2024

@kvhs

I suspect any adult child or sibling caregiver shares your concerns to some degree in a way that purely spousal caregivers might not. I would imagine it feels even more urgent for those who have children as well envisioning the burden of your care falling on them.

That said, it can be difficult to work up a family pedigree with only a single side and using observational data that may not or may not be accurate. Until recently, Alz was only definitively diagnosed at autopsy; given the similarities in symptoms an Alz-reported death might have been vascular dementia or alcohol-related dementia.

Given your concerns, perhaps a genetic counselor would be a useful next step.

HB

fmb · December 2024

https://alzconnected.org/discussion/comment/232191#Comment_232191

Couldn't have said it better myself.

@kvhs I have had similar concerns. I am 64 years old. Both parents and both grandfathers with ALZ, An aunt and three cousins with Lewy Body, the cousins were all early onset. Two uncles with Parkinson's. This is spread over both sides of the family. I no longer worry about it because there is nothing I can do about any possible genetic risk.

I am also concerned about the cognitive difficulties I have seen in myself since I became DH's caregiver. Part of it is seeing ALZ everywhere since I have become much more educated on all of the subtle signs and symptoms of early ALZ. In my case, I think my cognitive problems stem from caregiver stress and grief/depression.

I read somewhere in this forum that only about 10% of dementia cases are genetic. I can't find the quote; perhaps someone else will have more information. Having said that, the best practices recommendations are basically the same for dementia prevention as they are for other diseases of aging: Mediterranean diet, exercise, mental stimulation, a lifestyle of moderation (alcohol, overeating, etc.). Good advice for all of us.

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