Why isn't Alzheimer's mentioned more?

Jeff H

So, here we all are. Why isn't Alzheimer's and dementia talked about more in our society? It's crippling and life-altering to us caregivers and our loved ones. My DW has it. Her mother has it. Her grandmother had it. My dad had it. My uncle had hit. My brother-in-law's brother has it and my 1st cousins wife has it.

It's an epidemic and you don't hear anything about Alzheimer's or dementia in the media. Maybe because it's associated with getting old? Well, my DW is only 66 years old!

I'm sad and mad.
Sorry, just venting tonight.

trottingalong

I agree with you. I often wonder the same. I also wonder why the medical field isn’t more knowledgeable about the disease also. It also seems as though younger people are getting it. We are truly left out here to fend for ourselves

persevere

Agree. Just as they are chasing down autism they ought to be doing the same with dementia. It is an epidemic. History is going to show that the increase in preservatives, medications, plastics, etc are causing this increase.

jehjeh

I have had the same thought for years. I have been the most disappointed in the Healthcare system. Too many doctors and others in the field don't know how to deal with an alzheimers patient. I spent almost as much time in hospitals and skilled nursing facilities (rehab) as my DH did (and it was a lot over 10+ years) because caregivers often didn't recognize his limitations. They just added to his anxiety and fear so I stayed with him as much as possible.

Too many people have no clue about the reality of the disease or the role of the caregiver.

Too few resources are available. I would have been lost without this website. This seems to be the only place anyone is talking about it. I learned to navigate this journey from others on this site. I'm so grateful to each of you. I hope one day it will be easier for patients and caregivers to find the help they need.

Rick4407

I have come to terms in my mind with this question. The answer I came up with was it's several factors. My DW died in April of 2023. I spent 7 years after diagnosis both caring for her and studying anything I could fined on the subject. The answer I came up with is a combination of:

1. Science has very little understanding of the brain. How are memories from 30-40 years ago remembered clearly by the brain. I believe brain cells are very different from other cells in the body and those capabilities are not understood at all.
2. Culturally our society is focused on youth, looking young and staying young. So limited resources are spent.
3. In years gone by it was broadly labeled as senility, "Grandma's a little senile." So it was just dismissed.
4. As people live longer there is more degradation of all of the body that becomes evident. Bone joints can be replaced, stints put in arteries, but not much can be done for our brains that are so little understood.
5. My DW family had dementia for at least 3 generations I am aware of, but only in the women. The men had all died in their 50's before it would have been evident.
6. I suspect there is also an element of fear. Will I get it? Not talking about it keeps it away.

Current research is focused on the connecting materials in the brain. Literally my DW's last seconds convinced me that the memories are still there, just inaccessible. Her last few seconds she seemed to be clear…

harshedbuzz

@Jeff H

Along with Rick's excellent points—

Stigma and fear are associated with the condition. Few things are as upsetting as the thought of losing one's memories and capacity.

There is a misconception that even a significant degree of cognitive decline is normal with aging.

This is a group of diseases that strike older people, typically at a time when they have largely completed the working phase of their lives in terms of their contributions to society in the form of employment and raising the next generation.

Related to the above, while the lifetime risk of developing dementia after age 55 is 45% overall. But of those afflicted, more than a quarter of these people will be Black and more than half women groups who have historically been marginalized.

https://www.nih.gov/news-events/nih-research-matters/risk-future-burden-dementia-united-states

At this point in time, there is no cure. Newer "breakthrough" treatments are limited to those with Alzheimer's and are expensive and time consuming for the offer of several extra months in an earlier stage of the disease.

Dementia isn't always recognized by PCPs and getting in to see a dementia specialist can take nearly a year. Many families don't follow through on getting a diagnosis, which further skews the prevalence of the condition. Families, too, often miss the symptoms of dementia that aren't memory-related like the losses associated with executive function, social filter and empathy.

The folks who would normally be leading the charge for research and support around this group of conditions is too busy doing the heavy lifting of 24/7 caregiving to have much bandwidth left over for advocacy.

HB

H1235

The quick test the pcp did in the office was an absolute joke. I had to insist on a referral to a neurologist. The neurologist told us right away she needs to stop driving and should not live alone. If things were that bad, how is it the pcp could have no clue? Couldn’t they come up with a better test for the pcp than what is currently being used? Shouldn’t family observations be considered? Instead they brush it off as old age. We were very lucky with our neurologist. She told us she shouldn’t drive and should not live alone. She also recommended we see a lawyer asap. Too many neurologists stay out of family decisions (maybe for legal reasons) and leave family to flounder and figure these things out for themselves. These changes would not be major medical breakthroughs, just common sense. Maybe part of the problem with diagnosis is that people with dementia don’t believe there is anything wrong. Doctors and government are so concerned about their rights that patients go undiagnosed and untreated.

harshedbuzz

https://alzconnected.org/discussion/comment/264415#Comment_264415

Exactly.

I had some concerns about my mom and while her PCP did take our concerns seriously and did order bloodwork/imaging. He did an abbreviated version of the MoCA (like 3 questions) which she passed. Mom's Lyme Disease test came back positive, she was treated and improved somewhat but he still encouraged me to escalate to the memory center where the waitlist is 12+ months.

Mom was contacted by the research arm of the memory center to participate in study developing an improved test for use by PCPs. I was there when she did their screening on Zoom. It was pretty much a MMSE/MoCA type test plus some physical tasks and walking. Mom blew off the serial subtraction by 7s using a joke and yet we were still told she shows no concern at this time. I mean "uses humor to avoid answering questions" is literally from the DBAT Stage 3 checklist.

Maru

I am struck with how "with it" all these remarks are, yet, I am sure that I am not the only pretty old senior here. I don't think senility is the norm for the aged but that there are root causes…diet, alcohol abuse and all the other things listed above plus some we haven't even thought of. Even the genetic component doesn't explain it as many who have the "bad gene" still don't develop Alzheimers.

H. Buzz made a very acute observation. The caretakers are really the ones who know how awful, awful, awful dementia is. Even loving family members who see Dad or Mom once a week don't really know. The one who are the most affected and should be out there advocating for research, more and better Memory Care Centers, free home help are the very ones who are have no energy left except for caretaking.

And, then there is this…dementia, Alzheimers and all the other types, are largely a disease of the elderly, the disposable.

sandwichone123

I think another major reason it's not talked about is that it's so expensive. That's a major reason it's not covered by Medicare. If the wider society had to pay for all the care currently provided as unpaid labor it would seriously upend our economic system.

Sunfish47

https://hms.harvard.edu/news/could-lithium-explain-treat-alzheimers-disease

Hope you can see this link to the recent Harvard study news. My daughter got some Lithium Orotate for me. It’s a very low dose, inexpensive. I’m 76 and still all here mentally and trying to stay that way. My DH is stage 5 Alzheimer’s and started showing symptoms about age 78-79.

Sunfish47

https://www.pbs.org/newshour/science/4-things-to-know-about-a-new-study-on-lithium-and-alzheimers-disease

Another article on Harvard study.

BPS

We were lucky if you can call any of this luck. I printed out a SAGE (Self Administered Gerocognitive Examination test) off the internet and had my wife take it. Then I took that to her PCP and he didn't know about it but he took the time to look at it and from that he knew there was a problem and referred her to a neurologist pretty early in her disease. That was 10 years ago now. I don't think a lot of PCP would take the time to look at it.

H1235

Mom is currently in stage 4 /5 and in a nursing home. There is a care plan meeting next month and they have invited her to the meeting. Anosognosia is a huge part of dementia at this stage. How is it a care facility could be so out of touch to invite a person who thinks she doesn’t need care to a meeting to discuss her care needs. Everyone here knows you don’t point out the symptoms and limitations of a person with dementia to them. How can a care facility not know this?