My mother died at age 94 after approximately 14 yrs. with vascular dementia. Shortly after she passed in 2018, both my sisters, ages 67 and 69 at the time, were diagnosed with dementia, and are both currently progressing with it. My older sister is now in memory care and it has been a wild ride for the last few years. My grief at these losses is great. People who hear about my situation often ask me if I plan to be tested. I always say no, because what would I do with that information if I had it.
Has anyone had multiple family members with dementia and have you been tested? And are you worried? I'm not really worried. What I am is very sad and sometimes angry (not at them).
I like Geaton’s reply about planning- though I think all of us who’ve seen this scenario played out will have done that stuff already.
I am beginning it now—I am seeing signs of cognitive loss in myself, and am beginning this protocol to hopefully stave off what used to be considered inevitable. Mom died last month after several years of full dementia, but looking back I can see all the signs I didn’t recognize many years before mom began testing. So I have seen the damage and heartbreak first hand.
It seems this may not be inevitable anymore! I know this is a bold claim. Dr. Bredesen has the proper credentials, and research from over 10 years of trials with this protocol.Here is a YouTube video, recent, for those who like to listen to info.
https://m.youtube.com/watch?v=DGHcKEFvl5I&pp=ygUIYnJlZGVzZW4%3D
Here is a link to his books on Amazon. “The First Survivors of Alzheimer’s “ is an easy read, and chronicles the recovery of seven patients, in their own words.
https://www.amazon.com/End-Alzheimers-Program-Prevent-Cognitive/dp/0735216215/ref=mp_s_a_1_3?crid=566265X8KBY7&keywords=bredesen&qid=1685543218&sprefix=b%2Caps%2C4203&sr=8-3
https://www.amazon.com/First-Survivors-Alzheimers-Patients-Recovered/dp/0593192427/ref=mp_s_a_1_2?crid=566265X8KBY7&keywords=bredesen&qid=1685543249&sprefix=b%2Caps%2C4203&sr=8-2
Search his name—a huge number of video interviews and articles about his impressive work and results.
Dale E. Bredesen, MD, received his undergraduate degree from Caltech and his medical degree from Duke University. He served as resident and chief resident in neurology at the University of California, San Francisco (UCSF) and as postdoctoral fellow in the laboratory of Nobel Laureate Professor Stanley Prusiner. He was a faculty member at UCLA from 1989 to 1994, and was then recruited by the Burnham Institute to direct the Program on Aging. In 1998, he became the founding president and CEO of the Buck Institute for Research on Aging and adjunct professor at UCSF. In 2013, he returned to the University of California, Los Angeles (UCLA) as director of the Easton Center for Alzheimer’s Disease Research.
The Bredesen Laboratory studies basic mechanisms underlying the neurodegenerative process and the translation of this knowledge into effective therapeutics for Alzheimer’s disease and other neurodegenerative conditions, which has led to the publication of over 200 research papers. He is the principal investigator for the Alzheimer’s Disease Research Center at UCLA. He established the ADDN (Alzheimer’s Drug Development Network) with Dr. Varghese John in 2008, leading to the identification of new classes of therapeutics for Alzheimer’s disease. His group has developed a new approach to the treatment of Alzheimer’s disease, the MEND protocol, and this approach has led to the first description of a reversal of symptoms in patients with mild cognitive impairment (MCI) and early Alzheimer’s disease.
Mom has 3 siblings and 3 out of the 4 got dementia. One great grandparent had it, plus who know who else. All of them were very active, vibrant, non smokers, non drinkers, and barring some middle age ‘spread’, not overweight.
When I look at mom it’s kind of like looking into the dragon’s mouth of dementia, to be honest. I’m definitely afraid of getting it and don’t have anyone I can think of to be an advocate for me. That said at some point before too long I plan to set something up for my own care, whatever is possible. Better to be realistic and set up choices for myself rather than wait until it’s too late, as soooo many of us have seen here!
Thats my two cents, any way. Best to you!
AD, on the other hand, can be inherited. Only about 5% of all AD cases are inherited. There is a specific gene, that, if passed on from a parent, can increase the risk of developing AD. There are also some genes that will essentially guarantee the early onset of AD in those under 60 years old, however, these are rare (the 5%).
You say your mother smoked her whole life and your sisters are either overweight or suffered head injuries. All of these are factors in developing VaD.
So if you choose to get tested, it won’t show if you’re at risk for VaD, but could indicate a higher risk for AD if those certain genes show up in the testing. Remember, dementia is not a disease, nor is it a diagnosis. It refers to symptoms that cause a loss of cognitive functioning that interfere with daily life.
Do they know why your sisters ended up with early onset dementia?
😝 Hahaha, That answer sums it up perfectly. Except, make my drink a gin and tonic!
IMO having Dementia is because of life style...too much alcohol, too many drugs, smoking. Or a tramatic brain injury. My nephew has a neurological problem that will cause Dementia in time. My grandson had brain surgery for Epilepsy and was told he could have Dementia later in life. Heart desease. So many factors.
But I agree with you, why get tested unless you are showing signs.
https://www.alzheimers.org.uk/about-dementia/risk-factors-and-prevention/is-dementia-hereditary
What would you do with this info? You would make sure you have all your legal protections in place (DPoA). You'd create a Advanced Healthcare Directive, a pre-need guardianship assignment, a DNR, a Last Will & Testament. Maybe even a Trust. You'd have a better idea of how to manage your money for this eventuality. You'd make sure you are in close contact wiith your primarry doctor, and eventually have your DPoA go with you to appointments. You'd have a password app and share the main pw with your DPoA so that they can more easiliy manage your affairs (and thus you don't burn this person out). You may even consider transitioning yourself into a facility that you've picked before you think you need it, so that "someone else" doesn't make this decision for you, in a crisis. If you want the maximum control of how the rest of your life is managed, this is what is what I would do. I wish you all the best and peace in your heart to not fret over things that cannot be changed or controlled.
I am still in good shape mentally and physically. Still clear headed and sharp and not experiencing anything concerning. I really do not worry about dementia in my future…until someone else raises the question. Still.
For the record, my mother smoked her whole life bur didn’t drink or eat much. Vascular dementia hit her in her early 80’s. My older sister had a couple of head injuries, and liked her wine. My other sister is overweight but has no other bad habits. Heart disease on our father’s side has made us all conscious of our lifestyle choices.
I hear many people (not you) using language that sounds like blaming. Here’s a thought. Maybe non-stick cookware, processed foods, toxins in our water supply, air pollution or other environmental hazards have played a role in so many more people getting and living with dementia.
I’m with you on that one. My grandfather lived to 101 & was begging God to let him die. He was bedridden but his brain still worked fine.
My mother on the other hand had dementia & lived to almost 99. There is no way that I’d like to live like either of them did especially my mother.
I do worry a bit about dementia. My mom has it and all the relatives that made it to 80 ended up with it as well. My husband and I are doing things to help keep ourselves healthy so we don't get it in the first place or help keep it at bay for as long as possible - eating less sugar and more veggies, eating blueberries and walnuts, using coconut oil, staying active, keeping a decent weight, etc.