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Vasculitis and Vascular Dementia running in families?
ninalu
Posted: Saturday, November 20, 2021 6:22 AM
Joined: 12/22/2018
Posts: 154


Hi All,

I'm the daughter of a parent with Alzheimer's (my mom.) My mother's sister - my aunt - also had Alzheimer's and passed from complications due to AD.
Recently I learned that I may have vasculitis; it's not clear yet and we're still doing testing. 

My question for the group is about Vascular Dementia and if we know anything about its tendency to run in families and be mistaken as AD? My mom and her sister were diagnosed in their 7th decade. If I'm headed down that path too, is there anything I can do now (in my 5th decade) to help myself?  

My mom's dementia diagnosis was given well after the symptoms had progressed. Are we getting better at proactively diagnosing dementias? Can doctors see dementia coming, perhaps in familial disease? I wonder if my mom's AD may in fact be VD and might it change her treatment? She's late stage (6+)

Any tips on this situation would be appreciated. I do not have a neurologist 'on staff.' In college they thought I had Multiple Sclerosis due to a variety of symptoms. That dx was retracted. No one has mentioned to me that I may be headed for dementia and it's only me who now has some labwork that puts me at high risk of vasculitis and I worry. I would imagine that other child caregivers worry about having dementia themselves. Just wondering if there's anything I can / should do, other than trying to live life as fully as possible. 


M1
Posted: Saturday, November 20, 2021 6:39 AM
Joined: 8/22/2020
Posts: 1713


Ninalu, it's a reasonable question, but I'm not aware of any known connection between vasculitis--which is typically thought to be an autoimmune disease--and either Alzheimer's or vascular dementia.  Vascular dementia, as currently understood, is thought to be related to a general tendency to atherosclerosis, or hardening of the arteries; which is a different process that vasculitis.  I can see why you would be concerned though, and I think you're right that the best thing you can do is take as good care of yourself now as you know how.
harshedbuzz
Posted: Saturday, November 20, 2021 7:20 AM
Joined: 3/6/2017
Posts: 3125


ninalu-

I think anyone who has lived through dementia in a parent worries about their own family history and it's impact on their own future health. I worry. I worry a lot.

My dad and one of his nephews had Wernicke-Korsakoff's- an alcohol-related dementia- and I worry about my own risks as there is a genetic predisposition. My sister likely had it in the months before she died from complications of AIDS. Thank G-d I was unaware of its existence when I had extreme morning sickness or there would have been no living with me. Wine and craft beer are things I really enjoy and something around which my social life it built, so I am careful to enjoy as one might dessert a couple times a week as a treat rather than a nightly ritual.

At least 2 of my mom's sisters had VD. I try to manage my risks around that. I have never smoked. I manage my BP religiously, watch my cholesterol and workout for at least 40 minutes most days. I also worry that I had an aunt and a grandmother who died from supranuclear palsy with parkinsonian-like dementia. 

I've known 2 people with vasculitis. My MIL had Wegener's Granulomatosis and died at 87 with her cognition and memory perfectly preserved; her body just wore out. My own mother has had an extreme presentation of a different vasculitis- Temporal Arteriitis which began about 15 years ago and was relapsing until about the time my dad died 3 years ago. Cognitively, at 83, she is just fine living mostly independently aside from driving which is related to vision loss from a bout of arteriitis, mild AMD and having blown out an optic nerve. LOL, I obsess over the AMD, too. Two of my maternal aunts and my lone surviving blue-eyed cousin have it. 

If your lab work is suggestive of vasculitis, it might be a good idea to consult with a good rheumatologist for further discussion. If anxiety around dementia is impacting you day-to-day, finding a therapist to learn strategies to live more comfortably with it is a good idea. 

HB
ninalu
Posted: Saturday, November 20, 2021 11:04 AM
Joined: 12/22/2018
Posts: 154


M1 and HarshedBuzz, 
Thank you for your kind and reassuring replies.

I worry (perhaps excessively) when a health thing comes up, even though I take very good care of myself. Some in my family have died too young and others lived with (or without) chronic illness for many good, long years. 

I'll learn more about the underlying medical piece. I can see that I made an assumption that vasculitis = vascular; that it was part of the same process / progression.

/|\
Iris L.
Posted: Saturday, November 20, 2021 9:51 PM
Joined: 12/15/2011
Posts: 17587


M1 wrote:
Ninalu, it's a reasonable question, but I'm not aware of any known connection between vasculitis--which is typically thought to be an autoimmune disease--and either Alzheimer's or vascular dementia.  Vascular dementia, as currently understood, is thought to be related to a general tendency to atherosclerosis, or hardening of the arteries; which is a different process that vasculitis.  

 

 

 

With my diagnosis of cognitive impairment not otherwise specified, my cognitive changes have been attributed to systemic lupus, although I also contend with sleep apnea and hypertension and antiphospholipid syndrome which can mimic multiple sclerosis. 

 

People with lupus are known to have memory loss and cognitive changes.  Also those with MS.

 

When I first joined many members posted scientific explanations of the link between cognitive changes and autoimmune disease.  I don't think about all of that now, except for this.  Try to ameliorate cardiovascular changes as much as you can.  Keep your brain well oxygenated and with a good blood supply.  Monitor your blood pressure.  Avoid brain trauma.  Follow Best Practices. This is all I can add now. 

 

Iris


ninalu
Posted: Sunday, November 21, 2021 5:57 AM
Joined: 12/22/2018
Posts: 154


Thank you Iris. I take that to heart and appreciate your advice. 

Your message reminded me that we do our best. We don't control outcomes, but we do our best. <3


Jo C.
Posted: Sunday, November 21, 2021 7:26 AM
Joined: 12/9/2011
Posts: 12161


Hello ninalu, you have been given some good input.  As M1 said, "vasculitis" is an autoimmune condition and not a dementia.  There are different types of vasculitis; one of our adult sons developed anca vasculitis. It happened out of the blue with no prior medical history and he is an extremely healthy person in great physical shape who has always been very health conscious in diet and exercise.  His annual physicals showed no health problems and his cholesterol and other lab values were excellent; he had no history of infections and had been on no medications presently or in the past.  It simply just happened.

When a diagnosis of vascultis is made, then one is best served by being followed by a specialist for that condition and it is important to keep that professional connection. That specialist is usually a Rheumatologist.  If various areas of the body are affected, there of course would be additional specialists for that particular problem that would be included as part of the healthcare team.

As for having a family with a history of dementia, we are told the best approach we can have is to follow, "best practices," which is to follow a good diet such as the Mediterranean Diet and to get a good exercise regime which can be as simple as walking; and of course no smoking, and moderation in alcohol, keeping up to date with vaccinations, manage health conditions such as high blood pressure, diabetes and high cholesterol; stay brain active by solving crossword puzzles, reading, starting new hobbies; and staying socially connected.  

Let us know how you are doing, we will be thinking of you.

J.


ninalu
Posted: Sunday, November 21, 2021 5:15 PM
Joined: 12/22/2018
Posts: 154


Thank you, Jo C! I will post back on how things go. I appreciate your reply.
 
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