What care does someone who is fairly mobile and healthy apart from significant altzeimers/and need?

[KatyMac]

I dont know where to start

And are there problems with moving into a different county?

This was my grandad, very fit and healthy in body but his mind was gone. When it was averagely bad he needed watching all the time and the house had to be locked to stop him wandering off. If we went out someone would need to go with him to the loo as he couldn't find his way there and back. Needed reminding to eat and drink and wash and dress but he could physically do it but someone had to make sure he actually did. We were fortunate in that he didn't really have aggressive episodes but was quite absent. It is hard to watch and manage. for you.

I'm not quite sure what info your after but this sounds similar to my Mum, her dementia has progressed and she needs someone with her all the time, she needs help with all personal care and is totally incontinent. If it wasn't for dementia she would be perfectly healthy and can walk for miles (if she wants to) it def makes things tricky in some ways.

This was my mum. She needed supervising to get dressed (wear clean clothes, not her pyjamas, put pants on), reminding to wash and supervised in the bath, sending to the toilet and wear incontinence pads/knickers for when she forgot, cleaning up when that went wrong, talking through eating and drinking (she didn't recognise food, didn't recognise thirst and was not great swallowing, couldn't cut food), needed keeping safe as she'd decide she needed to do things (fortunately was a very slow/limited walker so never got too far), wandered in the night, and so on. Basically 24/7 care but being mobile meant she could get into more trouble.

Think of the needs of a toddler- they are physically capable of moving about and getting into mischief but can't prepare food, toileting is hit and miss and they would wander into traffic and/or get lost

My grandad was in a specialist dementia home and the different floors were occupied by different levels of physical ability so ground floor were the most mobile then 2nd floor basically bed bound. Maybe somewhere like that??

Otherwise it sounds like you'd need 24/7 care at home to prevent accidents / wandering.

I think he needs to go into a home

He has been referred for a social services assessment but told them he didn't need one

He lives away and has no support there so I think he'd be better closer to me

I think in many ways if they are mobile with dementia then than in itself can be a problem as they wander. My mum has dementia and not really very mobile. She is classed as moderate at the moment. She has carers come in 3 times a day for 2 hours a day. She needs help with reminding her to eat and drink washing and personal care. She is not incontinent but she needs to be reminded to pull the chain wash hands etc etc. She needs help dressing and undressing it she would likely forget to do so. She needs help turning tv on and off using her chairlift and using the buttons on her riser chair. I would say there is very little she does for herself as she simply cant remember how to do so. If she was more mobile I dont have any doubt she would wander off somewhere and then forget how to get there or where she was going as she did thus when she was more mobile. She needs help with what day it us etc even though she has dementia click in front of her. She needs constant re assurance about things

*clock

He needs a capacity assessment to deem whether he is able to make the decision that he does not require social care input.
Unfortunately, in my experience it can be quite difficult to find the right setting for someone with severe dementia who are still physically well. There are lots of safety aspects to consider such as access to cooking facilities, heating controls, ability to leave a place of safety etc. as they are able to do all of these things to put them at risk. It’s important to allow the feeling of control with subtle coping strategies to prevent harm.
Could you email his GP or speak to the social services department who were meant to be doing the assessment to ask about capacity to decline intervention? It may be worth finding out if there’s an Admiral dementia nurse in his area you can talk to?

Thank you all so much,

@SingingWaffleDoggy, capability assessment that's what we need! Thank you - I remember that from Nana

My DGM was like this. She eventually moved to a care home because they didn’t trust her anymore to stay alone in her home and she felt very insecure about this as well.
Before that my mother and her siblings would bring her dinner every night as she couldn’t be trusted to safely cook on gas anymore and a daily carer would visit to help her shower, get dressed etc.

Remember, today is the best he will ever be. Often, social services will only often intervene when a crisis occurs. This usually only occurs when exhausted family step back.
Think long term. I would try and avoid moving him twice. The scenario you describe sounds like 24/7 care is needed.
When needs outweigh wants it's time to hope a crisis happens sadly.

He seems very plausible over a 10 minute conversation but by the time you have been there 30 mins you can see he is very confused

I made him sign a letter saying I was seeking an assessment for him and one saying I was looking for alternative accommodation nearer to me

Is this the right 'sort' of place

I must add I am not caring for him, I am a telephone contact only his girlfriend has been doing most of the care but she is backing off (they don't live together) as she can't cope

Plus his church is closing during October so now seems a good time

You need to be looking for somewhere with a specialist dementia unit. That place looks lovely, but those gardens aren't secure so someone with dementia can't access them. Even if they don't need to be in a higher care dementia wing to begin with, it secures a longer term placement and means they will have more skills in house.
Mum had a respite stay in a home which didn't look lovely from the outside, but was so set up that she could wander safely round the home, find places to sit all over which had drinks/snacks out, little rooms with activity stuff in, courtyard garden with several doors and raised plant beds with tools left in them - all things that cut down on sustained wandering and gave her stimulation

That sounds amazing! Now how to find one of them

The first question in finding somewhere is alas whether he would be self funding or if he'll need social services to fund a home. The first, you can try the CQC website, search for homes near you with specialist dementia care and then look through them all and do a short list. The second, he needs an assessment, them to agree, and then they will tell you which homes they work with

this all sounds a bit vague and messy.

Do you have power of attorney for him? Does he have a formal diagnosis of Dementia?

If he’s still able to live alone without carers he probably doesn’t need residential care yet. What exactly is he struggling with?

If he is self funding then it’s easier - will he move closer to you? Ask locally for recommendations for dementia-specialist self funded care homes.

If council funded then it could be more complicated. Phone his local council for advice and an assessment to start with.

I have health and welfare poa
He is self funding
He is not eating properly, his clothes and home are not properly cared for, he is being taken advantage of by local shops (it equipment is bought disappears and is replace with older versions) He is distressed and unhappy

His church is closing and his girlfriend moving several hundreds miles away so he no longer has a carer

Not sure what else I can do

Formal diagnosis of alzeimers

Plus asd

If he needs supervision then he needs supervision, whether he's getting it now or not. The assessment is about identifying his needs, whether they are met or unmet. You don't know what care he needs but there are people whose job it is to identify that and they will think about things that you haven't considered.

In your situation I'd call social services again, explain that you don't think he is acting in his best interests in refusing an assessment, say that you have concerns about capacity and explain all your other concerns, especially that his local support networks are falling away and that he's at risk. Mention the PoA.

This is a hard thing to do and you don't have to do it on your own. He may not need residential care, this is where the specialist advice comes in. Social services can organise same-day home services which would give you some thinking time and they are used to dealing with fiercly independant people who don't want their help. What does he say he wants to happen - other than everything going back the way that it was which isn't going to be happening.

Does he get attendance allowance? It's not means tested and if he does need residential care he would keep it as a self funder.

No benefits are another area I have realised I need to look at - I'll speak to the Dementia hub about that

I work as a carer in the community mainly woth dementia patients. Quite a few of them live on there 9wn with family close by who do the shopping. The average visit set up is 4 visits per day. 1 45/1hour in the morning to help wash/dress and have breakfast. 1 30/45min visit at lunch and at tea time to give a meal help to go to the bathroom etc. Then 30/45mins at bedtime to get them washed into pjs and into bed. The majority also wear incontinence pads just incase as well. So it may be worth getting an assessment and see if you could get something like this in place. It does only work if the person woth dementia patient is not a "wanderer". If he is prone to take himself out and about then it is not safe for him to left alone for long periods of time.

Maybe - I live about 100 miles away so no-one will be close by once his church closes and his girlfriend leaves