Living with dementia and memory problems

Yes, well I do get, you know, some attendance allowance, which you can get because I need care, and there are people who don’t know that; I’m surprised the number of people who don’t know that it’s available; and you have to claim it, you know, you’re not offered these things [laughs] so you have to be willing to accept and it’s why not, you know, I’ve worked all my life [laughs] and paid for it and it, it’s there for those that, that want it. So, people should be willing to accept what they need.

I Keep thinking “how, how would you know?” It’s just one of those things.

You’re often not told, and there are allowances, I mean, even if you live by yourself in a flat, you know, you get reduction on your council tax, for example. A lot of people don’t know that even.

No

So, particularly if they’re, you know, getting elderly and they are confused and so on. And often if you are elderly, you can get help with other things, you know, with your electricity or your gas and all that kind of thing and – but we have someone from the Citizens’ Advice Bureau that comes once a month, I think, that people can talk to.

Again, from that course that I did with Age UK I discovered you could have attendance allowance, I discovered that if you have attendance allowance and you have a memory problem you can actually get twenty-five percent off your council tax, you know, all that type of stuff you have to find out, and it may say, may, may sound trivial but, you know, when you need carers or when you need support later on then that money is going to be quite useful.

It’s a very interesting thing about labels; when I got the diagnosis for Lewy Body dementia, the letter went back to the mental health, mental health team, memory clinic, and then the consultant wanted to see me. So, we saw the consultant, I then had a follow-up with the psychologist who gave me this wonderful booklet about all the I’m going to say benefits that you can get; most of it was wrong. But one of the things he said was, “You, you get, you get an allowance for your council tax.” Oh of course you don’t.

Oh. 

No, you don’t. A lot of things in this world, you know, that, that; I, well the thing I’ve, I’ve learnt is, is that a label can be a key to certain things, it can also be a key that doesn’t turn, so it doesn’t allow the door to be opened, sometimes it’s a key that does allow the door to be opened, or sometimes it’s not even a key in as much as I can’t get a disabled railcard because I don’t get PIPs.

Right, OK.

So [sighs] so, and that’s, you know, I’m not talking about me personally but if someone, you know; so, in terms of actually people needing support services some organisations have set their barrier, threshold at certain criteria.

Yes. So, do you get attendance allowance?

No, because I am, I’m, I am; can you not tell? I’m only twenty-six. You only get attendance allowance when you’re state pension age.