Options for assisted living or residential care in early dementia

[wannabedogwoman]

Is anyone able to offer any experience or advice on what sort of residential care/assisted living might be suitable for someone in the early stages of dementia? Mum is terrified of being alone at night (partly due to delusions) and getting increasingly unhappy being alone in the day time. She is in the early stages of alzheimers and vascular dementia, plus she has sight problems and some mobility issues. However, having read the situations that other people are in I suspect social services would say she just needs daily carers (if that). She is currently living with my sibling but this is not really a reasonable solution for anyone and she is getting increasingly unhappy with the situation (she has nowhere to store her belongings, sibling and family are busy and she is alone for a lot of the time). I think she would be happier living somewhere with other people around if she wants to chat in the day and with some sort of carers etc around so she knows someone will help if she has a 'wobble' or even if she just wants the channel changing on the TV and can't work out how to do it. Her own house is far too big and in an isolated area, but I really don't think she'd cope with a move to a smaller place on her own. Plus the think she complains about most is being alone a lot, and I know she is someone who thrives on having people around her.
I'm just looking to get an idea of what sort of possibilities there might be for her. She seems amenable to discussing this, but sibling is less keen (I suspect combination of denial, emotional response and protecting 'inheritance) so I feel like I need an idea in my mind of what a solution might look like before I have any serious discussion with sibling.
I think finances will be a complication. Mum has some savings- perhaps enough to cover up to a year of fees but definitely not more. She also has her own house but there is an equity release loan attached to it. I suspect if she sold now there may be just enough to buy a care annuity or pay for a few years of residential care but currently she is spending more on keeping the house running and other expenses than she has coming in so the longer she waits the less savings she has.
Does anyone have any advice on what could work, or where to start. Or is residential care not a reasonable option for her at this stage?

The issue you have is that dementia doesn't tend to improve. So, the decisions you make now need to be with long term thought. If she's not in the realms of residential care yet then it would be wise to get adult social care in her area to do an assessment because when the funding runs out she's going to need them to be on board.
The options at the beginning if she hasn't got a lot of funding would tend to be a care package, which would then increase as her needs change.
Assisted living is a stepping stone to full residential, but the problem again is that you don't know how long she could access this for. We had to go for a care package followed by a residential home which would ultimately convert to nursing care when the need arises. Age UK do some good information sheets as do dementia UK, unfortunately if she hasn't got the funds then she'll need to follow the pathway the social care teams tend to use.

I'd second the advice that whatever situation you decide she needs should be based primarily on what she's going to be needing in the future. A move from where she is to some sort of semi-supported living and then to a full-on care home will be too disturbing for someone with dementia. You are in one sense in an enviable position in that your DM wants to be living somewhere there are other people and activities and carers. Many parents with dementia refuse this when it's clearly in their best interests. I don't know the ins and outs of how the funding would work, but if it were my mum, I'd be looking for how to get her settled into a care home that had a dementia wing. Whether that meant that her house had to be sold or wound up or whatever (I don't understand the situation you described it was in) and either spend all the money she has and then rely on social services, which means you have to choose a care home that your LA will fund once her funds run out. But I wouldn't go for putting her back in her own home with carers just coming in once or twice a day, especially if she's scared in that situation. I wish you and your family all the best in navigating this for your mum.

The difficulty with all options is the finances.

I would get the social services assessment done and I would also work as closely as possible with your sibling. TBH the anxiety and not being very happy where she is may be not very much to do with living with your sibling and more to do with dementia. If your sibling feels they are happy for things to continue as they are, I might work with that. What about looking out for a companion carer for a couple of hours a day, and most of all a GP review to consider mood - antidepressants or antianxiety meds?

My suggestion is that she sells the house whilst she has some ability and ensure all powers of attorney are in place. Once this is progressed you can look at options where you live - ideally somewhere with both assisted living and full care on the same site

It sounds like she is a bit beyond early stages of dementia. Sheltered living is unlikely to be suitable, because she is likely to disturb other residents. She needs someone there 24/7 and a care home sounds like a feasible idea.

I hope one of you has LPA for her?

When I moved my mother to a care home the manager of the home did the needs assessment. I did not involve Social Services because she was self funding. (You can involve them if you want but it adds an extra layer of complexity for no particular reason.)

I would visit a few care homes (without your mum) explain her behaviours and needs, and see what they say. When you have chosen the one you think is best for her, they will do their own needs assessment. It sounds as if she has enough money to pay the fees in the interim until the house is sold.

Thanks everyone. I totally agree with the advice here that any move should be to somewhere that will work for the future too. I've had a look at some of the Dementia UK resources etc mentioned and have found a contact at Dementia UK that I plan to contact to see if they have any more advice on her specific situation.

@PermanentTemporary I totally agree that a big problem is finances. Mum's unhappiness with her current living situation is, I'm sure, partly because she wants things to be as they were when she was well. But I think there is a more realistic side of how she feels, because she currently does not have a room of her own or even a proper bed or anywhere other than a small suitcase to store any of her belongings. I'm sure that this in itself is not helping her dementia symptoms. Moving in with sibling was a reaction to her being afraid on her own at night but I really think it's time to find a better solution. Unfortunately sibling is not willing to engage in any sensible discussion about any of this so I think a social services assessment may be needed to persuade them to consider other options. Mum tends to look to me to help her with any decisions (I've always been the practical/sensible one and sibling's mantra has always been 'just leave it, everything will be OK') so I'd just like to try to understand what might be feasible so that I can help guide her.
@catofglory it's hard to know how far along her dementia journey she really is and how much of what she wants/needs is due to loneliness and vision problems. As I see it, the only thing that prevents her from managing in her own home but with carers visiting is her fear of being alone after dark and the delusions she has if that happens. Other than that most of her actual needs could be met by carer/family visits. I did look in general terms in to the cost of overnight carers but to have someone staying over every night would cost almost as much as a care home but would not address her day time needs. This, plus her desire to have other people around her during the day, is why I think some sort of residential care would be best if it was affordable.

The equity release means that her house will need to be sold as soon as she vacates it, my mother in law was in exactly the same situation, the only difference was that she ended up going into a care home straight after having a fall.
Do you have the information as to what percentage is owned by the equity release company as that will be relevant for any financial assessment, because she only actually 'owns' the percentage that the equity release company doesn't, which then has the knock on effect of what is available to her.
Currently, someone going into residential care who needs funding from the local authority, would have savings of £23,250 or under. The local authority basically 'rent' a bed from the care home and pay an agreed amount, your mums pension would be taken by the local authority and any amount she has in excess of £23,250 would be used to 'self fund' , so for example if the care home is £950 a week and they find that she has enough means to pay it then she would be paying that full amount until her savings drop below the threshold.
The difficulty comes if you are initially a self funder but the funds are likely to run out fairly quickly, because you need agreement from the local authority that your mum meets the threshold for needing residential care.
Generally (and it is very general) the local authority would be looking at someone who wouldn't be able to manage on 4 X care visits a day. It tips over into residential when the person needs care at night. This tends to be (but not exhaustively) if the person is becoming a danger to themselves or others, is known to leave the house, becomes verbally or physically aggressive, demonstrates to a social worker that they lack capacity to make decisions about where they live. Being afraid at night wouldn't influence a social worker, having delusions would.
If she's currently assessed as having capacity, then she would have to agree to moving into a home.

It’s really tricky, but great she’s on board with being somewhere that would support her needs. Long term, she may need 24hr care, and that is likely to be much more expensive if in her own home than residential. From experience, It’s a big step though in moving into residential, so the sooner the better otherwise she will struggle more as the dementia progresses.
can you sit your sibling down and talk through the reality of caring full time for someone with advanced dementia and what they are happy doing?
At this stage, your only options are probably one home with increasing carers, in siblings home with increasing carers, or residential. Anything less than residential (eg assisted living) are likely not going to accept her/ be suitable at this point unfortunately (again coming from experience in a similar situation)

Your poor mum not even having a proper bed, and being scared at home. You're right that that situation is untenable.
Finances is absolutely your main issue here, yes. All of your mum's choices flow from that. I would advise that you find out exactly how much savings and equity (minus estimated costs of selling the house), then set against her incomings (eg pension, attendance allowance) and the cost of a specific care home that you prefer. Choose one with a dementia wing (for later) and ask them all the details about the contract as in my experience care home fees rise speedily year on year. See how long her finances will last and/ or get some quotes on an annuity.
Only then can you make an informed decision about if she could self fund. Also get LPA and apply for attendance allowance pronto if not already done.

OP you said

the only thing that prevents her from managing in her own home but with carers visiting is her fear of being alone after dark and the delusions she has if that happens.

But that 'only thing' is a huge thing, which indicates she needs 24/7 care. And today is the best she's going to be. So you are right in thinking about residential care.

My mother had care at home for 18 months, and then there reached a point she couldn't be alone at night. I did think about a live in carer but it is prohibitively expensive when you include utilities and food.

And actually she was very content in her care home, because there was always someone there to reassure and help her.