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Dementia & Alzheimer's
gingerface40 · 23/06/2021 17:47
Wondering if anyone can help me, my mam is 73 and has just been referred to the memory clinic, does anyone know what happens here ? I work In Mental health but it this area I have no background in.
She has really bad short term memory to the point she will be unable to go anywhere alone.
Has anyone had any experience? And what type of treatments there are? I
Vaguely remember my Grandad being on Aricept
CarrieMoonbeams · 26/06/2021 15:37
I just mentioned it in a round about way, but she started crying, then said that I just want to get her put in to a Home, and then said that she hates me .
Well, tbf, I know she hates me anyway, but she's not actually said it for a few years. Oh well. I'll get my brother to mention it again in a couple of months, he's Golden Child, so he'll probably have more success. I'll pass this info on to him.
SinisterBumFacedCat · 26/06/2021 15:49
My DM has been referred to the memory clinic but due to COVID they are no longer doing appointments at the actual clinic, so far it has been over the phone and home visits. The problem I have is they won’t diagnose without an MRI, and she has now missed 2 appointments due to “loosing” the letter. I have actually managed to obtain the details of the next scan (she has gone on holiday) so I can try to rearrange it and sort transport etc. Without a diagnosis I am fucked, I need her to agree to POA, even if it’s not me. I am equally over relied on and not trusted, everyone else though is so very wonderful.
TDogsInHats · 26/06/2021 16:03
My dear old mum has mixed dementia ( Alzheimer's and vascular)
She was diagnosed several years ago.
I took her to the memory clinic, after a referral by her GP. It was a separate area of our local hospital.
Mum had already had blood tests, urine test and a head scan was arranged after the first memory clinic appt.
During the second appt (after the scan) I was asked all sorts of things about mum, unfortunately in front of her. She took my frankness really badly. I mean, who wouldn't? You don't normally talk about all the things going wrong with someone.
Mum became very nasty to me and suspicious of my motives.
Personality change is a marker in some dementias.
Luckily after a couple of years of being on the receiving end of mum's cruel digs, she reverted to being really sweet and loving again.
It is such a horrible disease, mum has always been a brilliant mum apart from that one or two year lapse.
Frankley · 26/06/2021 16:05
I had a relative who was referred to the memory clinic. He did not want to go, said he would be asked tricky questions. His partner said as there is no cure anyway he didn't need to go if he really didn't want to and he understood about not getting
a diagnosis. It saved a lot of traipsing about, especially as he had mobility problems. . He lived 5 years more, didn't get too bad but slept a lot. It never mattered with the GP that he hadn't got diagnosed. I would like know how much the treatments work and if it would have been beneficial or not if he had gone.
gonow · 26/06/2021 20:48
Mum handed all the financial stuff over to me about fifteen years ago. She was fine then but getting old and just couldn't be bothered any more. We got all her bills done on line by DD and I've got POA. It was about the only helpful thing she ever sorted, her carer is a private carer who we found through word of mouth and has been a godsend
RunnerDown · 26/06/2021 20:57
Is that the kind of place you're all talking about?
Can anyone point me in the right direction please? My mum is very skilled at masking her problems with hearing, eyesight and memory, and she talks very convincingly about times when she helped me at my work, times when she helped my brother with certain things etc - none of which happened, but unless you were there, you wouldn't know that it's not true. Her brain is certainly working in mysterious ways!
If you are near Glasgow there are lots of clinics that assess memory. They come under mental health services- specifically called old age psychiatry. If you google your local mental health service it should tell you where the dept for old age psychiatry is based .You do need the GP to refer you.
You can self refer to the Glasgow memory clinic and they will carry out the same tests and make a diagnosis. They are funded by money from drug trials and so you can get access to trials of new treatment. They don’t do all the support part or sign posting to other services .
Alzheimer’s Scotlandhave a great website with lots of info
moonbedazzled · 26/06/2021 21:10
I wonder if I could ask a question to those who have been to the memory clinic?
My mum, 85, has undiagnosed dementia. She's quite open with the family about it, although she doesn't tell friends. But her dementia has progressed and is now at the moderate stage so of course everyone knows but says nothing. She recently had to go into hospital (not dementia related) and on her discharge letter it advised she be sent to the memory clinic.
We have POA and she receives the lower band Attendance Allowance. Other than that she has no right to any free assistance.
My questions are:
- Would it be true that the only thing the memory clinic could do is provide medicine? And did the medicine help? She hates taking tablets and will only take them if we stand over her!! We go 4 or 5 days a week so some days she won't take any tablets.
- Did Social Services automatically get involved after your attendance?
- Were there any positive results from them attending?
Thanks for your help. It's such a tangled up disease and although there pages about it on the web, the actual concrete information they give is very limited.
moonbedazzled · 26/06/2021 21:16
I actually thought she was just depressed at the start and she was really quiet and like
She's gave up.
My mam doesn't like me much anymore as she said I showed her up at the doctors.
Don't worry. There's every chance that soon she'll have forgotten she's even been there!! Sorry, I shouldn't joke because it's an awful disease. It's stressful and exhausting - for me. Mum, on the other hand, has had a personality change and is just the loveliest person to deal with. And she's the happiest I've ever known her.
CarrieMoonbeams · 26/06/2021 21:29
Thanks Runner. I'm on the "salt and sauce" side of the country, rather than the "salt and vinegar" (now I'm REALLY hoping you're Scottish, otherwise you'll be totally bewildered!). I would have taken her to Glasgow if needs be, but I'll see if she can be persuaded to go to her GP first. It'll be my brother who'll deal with it now (or not) because she reacted so badly to my gentle suggestion this morning.
I'll tell him about the Alzheimers Scotland website too, thanks for that info.
It's such a difficult stage. I know she's struggling, but she's incredibly skilled at bluffing her way through so very few people realise how bad she is.
It's not a personality change for her to say that she hates me though, she's said it on and off since I was a child. Anyway, that's by the by.
Best of luck to everyone on this thread, and thanks for sharing your info and guidance.
whereiwanttobe · 26/06/2021 21:52
The memory clinic gave me a lot of contact numbers for help - but I could easily have googled them myself. The medicines weren't suitable for mum, so that was of no use.
Social services have not got involved at all. We seem to have been discharged and left to get on with it. The memory clinic don't seem interested once they've given their diagnosis. Perhaps it would be different if she was taking medication.
And the most useful part of the diagnosis is that it's opened doors to attendance allowance, a blue badge and funded home adaptations because in mum's case her mobility is now severely impaired by her 'Alzheimer's shuffle'.
Frankley · 26/06/2021 22:36
My relative got Attendance Allowance and Blue parking badge without having a diagnosis. Also got free hand rails put in bathroom when someone came to his house after an unrelated to dementia short spell in hospital. He would have been given other stuff then if he had needed it. Carers would have had to be obtained privately as they had more than is it £26,000, in savings. Later on when he again had a short spell in hospital unrelated to dementia, his partner asked his GP if it mattered that he had not been diagnosed properly at a memory clinic the GP said it didn't matter as hospital would just go on how he was at that time anyway. I don't think it made any difference that he hadn't been properly diagnosed, unless medication would have made a difference .
TheDaydreamBelievers · 27/06/2021 00:48
Sorry to jump on here - I have a close relative with mid stage dementia (the stage where they try to mask everything and think you are colluding to imprison them, sadly!) and have also worked professionally in a related field. The main benefit of a dementia diagnosis in Scotland is the 1 year support from a dementia specialist nurse after diagnosis. As PPs have said, nhs memory clinics are accessed through GP. If your loved one wont agree to talk to GP, remember you can call to tell the GP your concerns, they just cant tell you anything. Our GP then called our relative in for a "review appt" to probe themselves. Lastly, I'd definitely recommend someone getting financial and welfare power of attorney. Becomes invaluable down the line x
Geamhradh · 27/06/2021 09:36
I think the problem is, with help available, that it differs from region to region. My Mum was in the Midlands and the help we received was excellent.
From regular reviews of medication, which as the illness progressed were tweaked, to referrals to a sort of "club" for want of a better word, where she went once a week for about a year, to help with adaptations for the house (safe key box outside for example, because while she was still living alone you can imagine how many times she lost her keys or just went off without them.
Then there was a period of about 6 months when she had a weekly home visit from a team (I can't remember the exact name- attached however to social services)
The GP said to us (and was right) that while the local authorities see that there are family members to do the grunt work, they'll let that happen. Because, obviously, of funding cuts.
I'm in a different country, but had another relative nearby who kept an eye.
It's not an easy journey, and it's still not easy for me to think it- but the best thing for all of us was when she finally went into residential care. Because initially (and this is the fucker about it all) you have this slightly ditzy person getting a bit forgetful, but still going abroad, driving, doing the accounts etc. And you think you can handle it. Then comes the aggression, the hallucinations, the utter conviction that the dead are still alive (to the point of going to their house at 4am and banging on the door) etc etc.
Sorry for the gloom and doom scenario, but I think if I'd known then more of what I know now, it would have been easier to deal with.
Btw, there's a long running chat thread in Elderly Parents with the word "cockroach" in the thread title. A mine of practical information and handholding for those who need it. Lifesaver for me back then.
gonow · 27/06/2021 12:46
I'm guessing a lot of this depends on how old the person is when the dementia starts. My mum has only really shown any signs for the past year and at nearly 93 and unable to do much more than sleep in front of the tv anyway it hasn't been too much of an issue compared to someone who was for example in their seventies.
DinosaurDiana · 27/06/2021 12:47
That's what I was worried about, as she probably won't go 🤣😂
My MIL refused to go on the day of the appointment so someone came to the house another day.
She was made to have carers as they have to see her taking the medication.
ancientgran · 27/06/2021 12:56
My aunty was the same, was never aware of the diagnosis for more than an hour or two. We skirted around the issue as much as possible but when we had no choice but to mention the diagnosis she was devastated every time. Strangely though she never forgot the memory clinic, she hated them, blamed them for everything. When she wasn't blaming me that is.
Oh yes, I remember the blaming from my aunt. The cousins who did nothing were wonderful, I did everything I could and she openly told the social worker in front of me that she wanted to hurt and upset me. She sat and smirked and I had a cry.
It is so hard, we are far on now. At nearly 70 I panic everytime I forget something, it has made me paranoid.
ancientgran · 27/06/2021 13:19
DinosaurDiana I'm nearly 200 miles from aunt and social services and GP were hopeless. I was being admitted to hospital one day when GP surgery rang demanding I sort out this that and the other. I explained I couldn't do anything as in hospital for 4 days. When I got home 4 days later they phoned within 30 minutes to tell me I needed to sort it out.
She had to pay for carers due to money in the bank, I told social worker I was renouncing POA and they could deal with it. They blackmailed me and said if I gave up they would change the company providing the carers to one that was 20p an hour cheaper. I said it didn't matter as they weren't paying but they said that was policy so I kept going as the idea of her getting used to new carers was too hard.
The police kept phoning me demanding that I stop her calling them, they must have known from the number I wasn't local.
I can honestly say there was no official body that gave me any help at all. In the end we paid for a private social worker who sorted out a suitable home and he got her there, God bless him because I don't know what we'd have done if it had gone on much longer. The local authority social worker told me if I couldn't get her physically into a home the only alternative was they'd send "the men in white coats" can you imagine them terrifying and manhandling a woman with advanced dementia. The private social worker did it with charm and kindness.
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