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Dementia and Alzheimer's

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Original poster

Early onset Alzheimer's

16 replies

Melabells · 19/02/2021 10:05

Hi everyone. So after a year of testing it has been confirmed yesterday my dad 64 has early onset Alzheimer's. I'm not shocked as dr had told us before Christmas it would be a type of dementia we just wanted the scan to pin point which type. My sister and I are his carers as he has been unable to drive for the last 6 months and we help him with shopping , keeping his house from getting too cluttered. He doesn't do much at all we tried punt by numbers, sketch books as he used to love art but they lie untouched. We encouraged him to listen to music as he used to love jazz but he declines. He is able to heat up food in microwave but is starting to forget to eat so we got him a talking clock to try and help with that but he doesn't like it and think it's someone spying on him. I guess I'm just looking for other people with stories to share of their experiences with early onset Alzheimer's. I know it's so different for everyone but we are feeling lost. Sorry for long post!

OP posts:
BunnyRuddington · 19/02/2021 12:23

No experience of early onset but if he's forgetting to eat, could you look at getting carers for him?

Has he got a cleaner to help out with the house too?

Did he give you or your DSis POA before his diagnosis?

There are lots of other MNers with much more experience who can talk you through assessments for care plans and applying for attendance allowance.

Hopefully someone with more experience will be along soon Flowers

Original poster
Melabells · 19/02/2021 12:58

POs is in place and I have a carer support worker helping with the attendance allowance. Next thing we have to do is start looking for a carer to check in on him but I don't even know where to start. I wish I had a crystal ball so I could look into the future .

OP posts:
BunnyRuddington · 19/02/2021 13:13

Does he have a Social Worker Mela?

I found DMIL useful although I did have to phone him almost daily.

Original poster
Melabells · 19/02/2021 22:22

No social worker but he had a CPN and an occupational therapist who is trying to get him a bit more active .

OP posts:
BunnyRuddington · 19/02/2021 22:41

I've had very little experience, just DMIL and that wasn't early onset but I'd say that your DF definitely needs a SW.

Kitkat151 · 19/02/2021 22:42

See if you’ve got a local branch of admiral nurses, they are dementia specialist community nurses ( like Macmillan nurses are cancer specialist nurses)

wintertime6 · 19/02/2021 22:54

Really sorry to hear about your dad. My good friend's mum took early onset dementia and they bought her a bungalow a few doors down from my friend and she managed there ok for a few years. But as time went on, it became more worrying for her daughter, there were incidents of her putting a hob ring on and leaving it on, going out for walks late at night etc. It all became pretty stressful and they moved her into a home a couple of years ago (she's early 70's now). I think that was a very difficult decision for the family but there was a great sense of relief after she moved in there as it removed a lot of the worry. She had carers in her own home before that.

When she lived by herself she went to a day centre where they did things like dancing to old style music which really lifted her, I think it took her back to her younger days. Obviously things are different now with COVID unfortunately.

That's probably not very helpful at all, but just wanted to share a bit of how things have worked out for them.

Firststariseetonight · 19/02/2021 23:27

Maybe contact alzheimers society for help and information.

Original poster
Melabells · 19/02/2021 23:43

@BunnyRuddington that's great info thanks I will start that process next week and get in touch with h social work .

OP posts:
BunnyRuddington · 21/02/2021 07:54

that's great info thanks I will start that process next week and get in touch with h social work.

Absolutely no problemThanks

VanellopeVonSchweetz99 · 24/02/2021 02:07

Hi OP, really sorry to hear this. My MIL was at a similar stage this time 1.5 years ago. We had just gotten PO in place after she got scammed and increasingly forgetful. She had a lovely cleaner come twice a week who also helped with laundry and took her shopping. The had some apathy and very forgetful but basically fine, happy in herself, took meds, made cups of tea, took the bin out etc. Then we discovered microwaving meals for herself wasn't working any more, she burnt some soup and eggs and forgot to drink water. Made herself very ill with dehydration, think very poorly toddler with tummy upset. DH went to help her (1,5 h drive) and the 12 hours he spent with her changed him forever. She ended up in hospital (elder ward) for 2 weeks and we got private carer in once a day, plus Meals on Wheels. Meals on Wheels were fantastic for a few months, then she didn't fancy the food any more (ie didn't remember to eat it so it was cold and horrible). She also started to not being able to get out of bed in the morning or to go to the loo (physically she could but mentally she had lost that skill). Then we shifted to carers coming in three times a day. That's about a year ago now. Until she has more complex needs she will stay in her house. She doesn't seem upset or anxious but she is withdrawing more and more and is incontinent. It's very sad. If I had one advice it's enjoy every moment with your dad, it's a train that doesn't go backwards and he will never be as well again as he is right now. x

picknmix1984 · 24/02/2021 02:20

I do know about the types as I teach this subject. Early onset in under 65s tends to be fronto temporal dementia ( tends to be) . A scan can pick up atrophy in the fronto temporal lobes if so. If it is there are some distinct differences to Alzheimer's- language is affected more, they may start to lack empathy or sympathy etc Basically depending upon which lobe or lobes affected.

Feelings of persecution- tend to be associated with Lewy body dementia- has he any symptoms of Parkinson's?

However we are all different people and because of that our symptoms vary.

Original poster
Melabells · 24/02/2021 08:03

@VanellopeVonSchweetz99 yes we are trying to make the most of our time together hopefully when weather improves I can encourage him to come out with us more.
@picknmix1984 we were told his SPECT scan showed it was early onset Alzheimer's. no signs of Parkinson's but he definitely has very little empathy or sympathy these days.

OP posts:
picknmix1984 · 24/02/2021 08:18

@Melabells early onset dementia is not a type. It may help you to understand his behaviour more if you can pin them down to telling you this.

picknmix1984 · 24/02/2021 08:20

@Melabells sorry I'm half asleep you said Alzheimer's. His frontal lobe may be affected hence the sympathy empathy symptom but it's rarer for early onset to be Alzheimer's

Dexy1957 · 25/07/2021 23:26

My Sil has had early onset from the age of 45, she had a son who was six at the time.

She is 60 nowAnd has been in a home for the last four years, it is all so very sad she was such a brilliant very respected nurse and you can't believe how it happens. Her son has just got a first in biomedical sciences and wants to investigate dementia after looking after her all this time, Let's hope there is a breakthrough soon

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