> I imagine a significant number of people diagnosed with dementia likely do not have it.
I don't think it's as dire as you imagine. People don't just randomly drive themselves to nursing homes for no reason. Like you and I, few who are capable and willing to live independently would want to be in one.
By the time you end up in a nursing home, the odds are good that you require significant care and are unable to function independently. If that's true and you're in a nursing home and not a hospital or hospice, it's probably because the thing incapacitating you is mental — dementia.
However, if you do have dementia and end up in a nursing home... it sucks. Our culture and medical systems just aren't equipped to compassionately take care of fragile, dying people, who are confused, have trouble eating, shit themselves, etc. Caring for someone with dementia is brutal, heartbreaking work. Most people wouldn't want that job, and there's not enough money to pay well and compensate, so you get short-staffed or unhappy caregivers.
There are a wide range of conditions (neurological disorders, movement disorders, CSF disorders, sleep disorders, anemia, etc) that aren't dementia, but can look like it at times and will lead to someone being unable to care for themselves. That inability to care for oneself will persist until the conditions are successfully treated.
The problem with a dementia diagnosis in that context is that someone, probably the patient's family, has to go out of their way to show that the patient actually has something else and find a doctor willing to look into it before any other doctors will even consider the idea that they don't have dementia.
And while the patient has a dementia Dx, they will likely be chemically and physically restrained in a custodial care setting, which tends to further impair their functionality and ability to care for themselves, and that reduction in functionality is often taken as further proof that they are demented.
I have had between 10 and 20 physicians and 3 neurologists tell my family over the past two decades that what my grandmother had was Alzheimer's, Lewy body, and Vascular dementia, and that she would only decline. As it turns out, they were all wrong. They weren't just a little wrong, they were all completely wrong. To myself and my family, it was obvious that they were wrong because she would come back home from the Hospital, SNF, Board & Care, or Day Program and function much better than she did in those custodial settings, but they would only see her as mostly non-functional because the way they treated her significantly worsened her conditions. We had to really dig to figure out what was going on, but most people probably don't have the time and energy to do what we did.
There are also many people who do have different forms of dementia, but even in that population I imagine there are many treatable disorders missed that complicate their dementia.
Ultimately, the elderly are the most medically complex population with the least amount of time left to live, and because of that they tend to be given the least amount of care, and what care they are given tends to be of lesser quality. It's understandable from the point of view of triage, but as a society we should acknowledge that.
> If that's true and you're in a nursing home and not a hospital or hospice, it's probably because the thing incapacitating you is mental — dementia.
You can have musculoskeletal issues that prevent you from performing everyday activities. You might also have neurological issues that don't affect thinking or speech (e.g. as a result of stroke). I'm unsure if vision problems acquired at old age can confine one to a nursing home: it's harder to learn to compensate (e.g. because you have worse medium-term memory and poorer senses other than sight).
Medical facilities for the "physically incapable" and medical facilities for "memory care" are VASTLY different.
You don't get admitted to a "memory care" facility easily (multiple doctors and psychiatrists have to sign off) and it's expensive once you do (health care only really pays during immediate medical events).
I do know that there are horrors in nursing homes. I also know from personal experience that there are also good ones. But, it, as always, comes down to money.
In my experience it's relatively easy to get admitted to a "memory care" facility even if someone shouldn't be there. All it takes is a dementia diagnosis and a bunch of doctors who don't care enough to look harder.
I have no clue where you're located, but that simply is totally alien to my experience.
My mother had to have 3 independent assessments before they would authorize permanent admission. And her Alzheimer's was beyond obvious once you knew what to look for.
A friend of mine wound up in a hospital mental health care facility in California, and within 48 hours had a state appointed patient advocate who immediately started forcing the doctors to justify their assessments. The doctors played some games, but at the end of 10 days, he was released as he should have been since whatever the "episode" was had clearly passed.
We're in California as well. The state is pretty good with involuntary holds where someone is being deprived of their rights, but anything that's voluntary doesn't fall under that, even if the patient and/or their family made that decision based on tall tales a physician or physicians spun.
I don't think it's as dire as you imagine. People don't just randomly drive themselves to nursing homes for no reason. Like you and I, few who are capable and willing to live independently would want to be in one.
By the time you end up in a nursing home, the odds are good that you require significant care and are unable to function independently. If that's true and you're in a nursing home and not a hospital or hospice, it's probably because the thing incapacitating you is mental — dementia.
However, if you do have dementia and end up in a nursing home... it sucks. Our culture and medical systems just aren't equipped to compassionately take care of fragile, dying people, who are confused, have trouble eating, shit themselves, etc. Caring for someone with dementia is brutal, heartbreaking work. Most people wouldn't want that job, and there's not enough money to pay well and compensate, so you get short-staffed or unhappy caregivers.