Dementia - The Quiet Crisis


I am a full time carer for my mother. The fight I've had with the social care system has been a hard slog to say the least. The elderly and people with dementia seem to be a forgotten race, no one really cares. I know for sure these agencies don't listen. The government are talking about doing researches to find early signs, that's good don't get me wrong, but what about people who already have it. They need a lot of help and support. Some of these dementia sufferers voted these politicians and councillors in and now they can't get the time of day from any of them. As for the care givers we are under valued. Yes they may be our mothers, fathers or family members, but does that mean we the carers don't have a life. We still got bills to pay, we still have desires we want to forfill, we have dreams like everyone else. But because of the red tapes we get next to nothing. You can't really work and as for trying to further your education if you do part time study you can get funding for the tuition only, full time students get tuition and maintenance payment but if you do full time studying you can't receive any carers allowance or income support, which means you can't get your eyes tested or have help with dental care to name but a few. Why should we be penalized because we care. When you get home from college or university you don't stop being a carer. We and the sufferers know what dementia truly is. Why do the government never talk to us to get a better understanding and change all these ridiculous rules they have to make life just that much more better if they really want to help, and stop acting for the cameras or making it look like they are concerned or interested. Seriously something needs to change. We need a change for the better. I want to start that change, are you with me?

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My theory is that as the number of elderly increase dramatically with the aging of the baby boomers and likewise the number of people with dementia increases , change will ultimately be forced in how our society deals with this. Only a small percentage of people have the assets to pay for care till the end. Only a certain percentage (no idea what it is) have relatives willing to halt their own lives to be full time caregivers. And the rest become the financial responsibility of the government. I think in time the financial pressure is what will force the changes we hope to see in scientific research and caregiving support. I suspect it will have to get even worse than it is now though before this finally happens.

The population is more aware of Alz than they used to be. When I was growing up I didn't know any old people with dementia. Now I don't know if anyone doesn't know someone who has it. Maybe it's because we're living longer, or maybe it's something else. I've been listening to experts such as Dr. Perlmutter who think it's a diet thing. I don't have any real opinions, but I do appreciate the people who are thinking of ways to prevent Alz.

Something that bothers me as a caregiver is when I read things that are supposed to help the caregiver, it is mainly geared to how we can better help our loved one. I get tired just reading it, because I know I don't have enough time or the will to do all the things that are discussed. I do what I can, then feel guilty for what I can't (or don't want to) do. Each of us can only carry a certain number of straws on our back. We can get outside help, but there are so many domestic and income barriers. Getting rid of some of the barriers to assistance would be a good starting place, but I don't know how the states would afford to do it. And there is always the resistance of our elders to bringing help in. This last thing may be the biggest barrier for someone whose family is not helping.

When Ronald Regan admitted publically that he had Alzheimer's then disappeared from the public for good there was a good discussion and debate going on about dementia and Alzheimer's and what drugs can we find to slow the progression but then the debates faded away, other issues came to the forefront and dementia and Alzheimer's took a back seat. I don't know if it's forgotten as much as people just don't care. If they don't have to deal with it personally who cares? This is not my point of view, just an opinion. I'm sure there are people working on a cure but they still haven't found a cure for cancer yet so I don't expect a cure for Alzheimer's any time soon. And as for Regan, he died from Alzheimer's and we can all imagine what his life was like in those final years, months, and days and what his wife's life was like as well. I'm sure Regan had every possible treatment known to man yet he still succumbed to the Alzheimer's.

And I have to agree with assandache7 above. If my brain is turning to mush I certainly don't want to be taking half a dozen other medications to keep my body functioning but this is often the case. I've seen it many, many times. Someone completely out of the mind with Alzheimer's, can't speak, doesn't recognize their family, can't feed themselves but let's not forget to give them their blood pressure pill!!! God forbid their blood pressure is too high!

I agree with Capt that dementia has always been apparent in the elderly but they were considered crazy. Now we have more information about dementia and care centers with compassionate professionals to help the elders.

My complaint is that the medical field is researching and inventing drugs to keep you alive for ever, while your brain is turning to mush...Who wants to live forever when you don't even know yourself? Not me!!!

case ;
i appreciated the help of hospice in our home in my mothers last months but the s**t would hit the fan if they crossed the line between helping and imposing their expectations in our home..
proportion is complicated..

after reading your post im a little more apprehensive about the usa adopting more socialist policies. absolutely no offense intended but you seem to be waiting for assistance / guidance / instructions . i could see that attitude being problematic in the usa because were the well armed citizens who expect nothing from the government but to get the h*ll back down the driveway and leave us alone.
ok. having made those statements i admit that both are extremes intended to provoke thought. i agree with you. more public awareness would make life better for senior citizens and carers. gorbachev said it best a few years ago. the way forward will require a sensible mix of capitalism and socialism.
i think dementia has always been apparent in the aged, were just beginning to understand the cause and final result. all of the organs are diseased and compromised in the elderly. the brain is no exception.

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