What type of accommodation for dad with (probable) dementia?

[Persipan]

So after his recent shenanigans getting very confused and having to be reported as a missing person, and his subsequent brain scan revealing evident issues (he's not had a clear diagnosis yet but it was strongly suggested that he has either frontotemporal or vascular dementia), my 74yo dad is now suggesting he might like to move down to live closer to me.

This is, on the face of it, fairly sensible - he's coming to understand that he most likely won't be able to drive again, and wants to be able to still see my son regularly. (And presumably me as well, but I'm not kidding myself that I'm the main draw!) However, he doesn't seem to be particularly thinking ahead to how he may decline going forward, and I suspect I'm going to need to steer him quite heavily towards appropriate options and things to consider. This would be easier if I knew what those were!

He thinks he would like to live in Small City where I work, rather than Small Town where I live, because it has better transport links there. (It does, although I somewhat doubt he'll be using them all that much.)

He can currently manage stairs so in his mind he wants 'a house' but his mobility is already not brilliant. He can't really look after his garden. He has to use the bathroom with a walk-in shower and sit on a stool while in there. And so on.

I am conscious that moving (if indeed it ever happens) could be quite disorienting and I'm keen to encourage him, if he wants to do it, towards something that's likely to work well for him for as long as possible.

Any thoughts from those who have navigated similar?

Leave it until he needs/agrees to residential care.

Somewhere he can remain once his condition sadly worsens, so somewhere with lockable doors, door alarms, 24 hour care.

I used to work in care and we had a lot of people who would move in in the early stages of dementia and a few months later we weren't able to safely manage them and had to fight SS to find them somewhere more suitable.

Agree previous posters . He sounds like sheltered accommodation flats won’t be suitable ( at least not for very long) I’d start looking at care homes near you so you’re prepared in advance .

While what @AnnaMagnani says is eminently sensible, I'd be minded to move him to a local to your city to a residential option which has a warden, if he was at all willing to look.
A lot will depend on what funds he has (and do consider applying for Attendance Allowance and Council Tax rebate if you havent already).
Ideally a two bed space with walk-in shower and balcony/lift would be what I'd look for. (Two beds so you can stay over or a carer can.)
Walk to a supermarket and near bus stop /train station to preserve his independence...
My DPs came a cropper as no nearby public transport and no downstairs shower option.
Also consider renting this space rather than purchasing.
Round where I am you can rent this for circa £800/ month. This might be a half way house to care home.

Both my mil, mother and father went into sheltered type accommodation at least a decade to fifteen years before they needed any kind of help at all. Then it was great because there were managers, panic strings, suitable bathrooms and no stairs. They still had cars and independence. Were familiar with the area.

Unfortunately it's too late for your father now. I'd leave him where he is. Organise whatever care he needs until he feels ready for a residential home or you have to make the decision for him.

We very nearly did this with our LO with VD They changed their mind and stayed in their home. A few months later I realized that it would actually have been a mistake to go into a semi independent flat. Everyone is different but the decline in cognition meant that we would have had to move them into care/ have a care plan within months. I agree though definitely rent if this is the chosen option. Sorry to hear about your father OP.

My mum lived at home with dementia for 10 years with support from family and physical adaptations and then carers coming in for the last 2, so I don’t agree that it’s not worth moving nearer to family unless it’s into residential care. She did live in a bungalow, though.

That's an incredibly slow decline for dementia, and really unusual. I suspect that your experience won't be useful to other posters who have parents with dementia.

What are the average life expectancy figures for the most common types of dementia?The average life expectancy figures for the most common types of dementia are as follows:

• Alzheimer’s disease – around eight to 10 years. Life expectancy is less if the person is diagnosed in their 80s or 90s. A few people with Alzheimer’s live for longer, sometimes for 15 or even 20 years.
• Vascular dementia – around five years. This is lower than the average for Alzheimer’s mostly because someone with vascular dementia is more likely to die from a stroke or heart attack than from the dementia itself.
• Dementia with Lewy bodies– about six years. This is slightly less than the average for Alzheimer’s disease. The physical symptoms of DLB increase a person’s risk of falls and infections.
• Frontotemporal dementia – about six to eight years. If a person has FTD mixed with motor neurone disease – a movement disorder, their dementia tends to progress much quicker. Life expectancy for people who have both conditions is on average about two to three years after diagnosis.

Unfortunately the OP's dad may not have a diagnosis but is a significant way through his disease process:
Can't drive
Can't manage his garden
Needs a walk-in shower with stool
Despite this wants to live somewhere with 'transport links' and unable to assess that he is already unable to use them

Ah, sorry, OP, but it is just downhill/
If you keep him at home, then carers can start to visit once or twice a day in time, then three to four visits, and then when your dad is no longer safe without 24/7 care and support, it will be time for him to move into a home, or have a live in carer. If you are going to move him, do it asap - at least you will be closer for the inevitable support you will provide.
Enjoy every moment with your dad now, take lots of photos, find out your dad's wishes, record all his stories for your kids, because sooner than you imagine, your dad as you know him will be gone. That's the cold hard truth, and it's incredibly sad, but I think it is better to be prepared. I hope your dad's journey is a gentle one, OP.

I’m going through this with my mum. She was diagnosed with early Alzheimer’s last year. Dad died suddenly and she wanted to move. We bought her a warden flat and it’s already not enough. She got SO confused when she moved, she ended up in hospital. It was awful. She’s now got a live-in carer and it’s incredibly expensive. £1450 a week.

We’re looking at care homes now.

A few doctors told us (after the move) that moving house often makes dementia patients worse. “Sometimes for a few months, sometimes forever.” It was horrible to see how quickly she went downhill. She’d been managing fine with 2x care visits a day in her old house. Now she needs someone around all day and night because she forgets to eat, can’t wash herself, forgets where she is.

Oh, and it doesn’t help that all the other residents at her flats are all striding off to Waitrose every morning or doing yoga in the community lounge. They’ve been quite snippy with mum, and clearly think she should be parcelled off into a home. The warden is lovely but the other women have been unbearably snooty.

I wouldn't recommend it
My mum was diagnosed in 2017 with early onset and died in 2022
In the last 6-9 months before her death my dad really struggled caring for her and he asked and asked for help. The 12 months before that as well she needed almost constant supervision

The help only came when she fell, I told him to ring an ambulance and then he had to refuse to have her home. She wasn't in the care home for long, developed a chest infection and as requested no antibiotics meant sepsis and she died in hospital

I don't say that to make you afraid of the future but it can be very short and sometimes there is a sharp decline

Is there an extra care facility near you where there are individual flats but a warden, a residents lounge & cafe? If you can get him in before he gets a diagnosis, it will make it harder for them to kick him out. Having an on site warden will make the time before he loses it all together easier & carers can be added on as he needs them.

Gosh I am so sorry for your mum. We were going to do the same ( renting to begin with) Then LO changed their mind. With hindsight I’m so glad they did even though at the time it seemed a good solution to us. Hope you can find her home with people who are kinder to her.

I agree with @AnnaMagnani

OP you are absolutely right that you dad's needs will progress but his dementia means he has no insight into this so you have to do that thinking for him. It's entirely possibly that by the time his house is sold and he arrives at his new one, he will be entirely unable to cope there. Dementia is a disease where you solve one problem only to encounter the next one.

My mother was diagnosed with dementia ten years ago. She managed on her own for a while, and then with at-home carers for 18 months. The carers were self funded and were in for four or five hours everyday, they made her meals, took her shopping and to appointments, did her housework, made sure she showered etc. It was called 'companion care'. But then she started wandering outside when they weren't there, and getting lost. She was constantly being 'rescued' by neighbours and became very anxious.

When someone gets to that point they can't safely be left alone, and I moved my mother to a care home near me. 7 years later she is still there, at a very advanced stage of dementia.

Dementia is unique to everyone.
I think @HeddaGarbled 's experience is entirely useful .. Not all parents or loved ones have a rapid decline and at 74 years, OP's DF deserves every consideration, which is what OP is doing...
A neighbour has kept her DF in her DParent's home for the last 8 years which is 150 miles away. The DF has made it to 94 but my friend is so burdened with the 24/7 phone calls and demands that she herself is now unwell.

There really are so many variables to weigh up...

Thanks all. You are very much saying the sorts of things I thought you would.

It's so tricky knowing that his situation will worsen, but not knowing when and in what way(s). I can see why he wants to move down and there are ways things could play out where he gets a decent run at that before needing substantial care, and gets to enjoy that time. And then there are ways where it all falls apart much sooner and unpicking everything becomes all the more complicated by a move. Things are not helped by the fact I'm a solo parent who works full-time and doesn't drive - the logistics are likely to be pretty hellish.

So far as I can see, he wouldn't be eligible (on various fronts) for the extra care accommodation the council signpost towards. There is a local retirement village kind of setup of very bland, eyewateringly expensive (to buy, I can't see any obvious rental option) flats with some social facilities, a warden and various bolt-on options for care. But, on the one hand I doubt he'd think that's something he needs, and on the other there's every possibility that he'd quickly be out the other side in terms of needs. So I'm not convinced it's necessarily the way to go.

I think the retirement village might be a bit perilous unless he can have the freedom of renting a flat there.

I would be careful with a retirement village. We looked into it for my PILs and the properties can very difficult to re-sell. I was glad they didn't do it.

You can't predict how quickly things will deteriorate, but you can try to future-proof things as much as possible. If your dad wants to move near you, it may be better to find him a rental (just a regular flat, not with a warden/extra care). That would allow you to adapt more easily when he needs to move on, and assuming he has enough savings you can buy at-home care as needed.

A complication is that you don't drive, and you are guaranteed to get frequent calls from him or neighbours for help, often at anti social hours, so if he is a distance away (you said he doesn't want to live in the town where you actually live) that doesn't sound a good option. You need to be able to get to him easily.

Be aware that at every stage, your dad will be certain that he does not need more help and can manage absolutely fine, even if he is getting lost or setting fire to his dinner.

There are some very good points to consider, OP.
It is probably inevitable he is headed towards full time care in a care home, but when that will be, you don't know.
You either leave him where he is until that time comes or you intervene.
If you make an intervention, you want that intervention to be mutually beneficial to both you and him.
Knowing now that you have DC, a full time job and are a non-driver, personally I would prioritise bringing DF as close to you as soon as you are able. @catofglory is right, calls at anti-social hours will escalate. As things stand, you shortly will have his car keys and car disposal to manage. Take my word, this is difficult from a distance.
Sadly, there will be many other issues heading your way of a similar magnitude.
It's tough enough emotionally grieving for the loss of his liberty and personality. Next, adding in the micro-management of his everyday becomes quite overwhelming. I send you a hug, as this is not what you were hoping when your lovely DF is only 74.
Are there any ground floor one bedroom properties within walking distance of you that would work, rental or otherwise?

Well, as if to underline everyone's points, he's just called me (by accident) and told me he can't remember how to log on to his computer.

I agree that I am not enthused by the idea of the retirement village; I think it would be much more difficult to offload when we (inevitably) need to sell it then a normal property would.

I may try to get him to think again about not wanting to live in Small Town. In my mind, probably what he needs is to be a) in a bungalow or other single-level property, b) close to stuff so he can interact with people and not be completely isolated, and c) somewhere I can easily get to/drop by regularly. There are perfectly decent bungalows in Small Town (there's literally one for sale in the street behind mine); there's an interesting high street, town square etc with cafes and a library and people; and, well, I literally live there. I suspect his impression of Small City is that it's also effectively like that - lots of stuff nearby and easy to get around - because he doesn't realise that I've always prioritised living very, very close to things. Actually, most of it is like most of anywhere - lots of suburbs with not much in them. And effectively on the venn diagram of a, b and c I could probably find him something there that does two of those things, but realistically not all 3.

Your Small Town sounds perfect . Our LO was a wizz on the computer for their age (80) . All of a sudden almost ,they had no idea where to start with it. Sorry that you and your DF are going through this.