Right move for early stage Alzheimers?

[Dagne]

I'm writing this time not about my relative, but about a friend who has a diagnosis of Alzheimers, but is not suffering yet other than forgetfulness. She needs to downsize, for several reasons: financial, isolation in her current location and to have a more manageable flat rather than house with garden.

The extra care facilities in the area she wants to move to seem to require that you already receive assistance with personal care. We can't find any retirement flats in the precise area she likes. I'm worried that a normal flat with no warden will only suit her for a few years at most, then she will have the expense and trauma of yet another move.

Does anyone have experience of persuading an assisted living facility to take them on the basis of imminent, rather than current, needs?

Many thanks!

 

[cragmaid]

It strikes me that a helpful communication from a kind SW might be just the thing...... Seriously though it might be useful for your friend to have a word with the Adult Social Care Dept at her local council.

 

[Dagne]

It strikes me that a helpful communication from a kind SW might be just the thing...... Seriously though it might be useful for your friend to have a word with the Adult Social Care Dept at her local council.

Thanks Maureen, that's a great idea!

 

[jaymor]

We have friends living in an extra care complex. The husband has dementia and they were originally turned down because of the diagnosis but they had a change of heart and allowed them to live there. There are people living there in both the rented and privately owned apartments that are there because the life style suits them and not for the care at this moment in time. Age appears to be the only restriction.

Seems very wrong to deny her an apartment because she does not require personal care.
I wonder if the dementia is making them jittery as it did with our friends. They accepted the original decision but asked what happened to those who already lived there and then developed dementia, would they be required to sell their apartment? The answer was no and they were allowed to rent an apartment.

Your friend is very wise to make these changes so soon after diagnosis. It will be so much easier for her to cope with the changes.

Hope it can be sorted and the required accommodation can be found.

Jay

 

[FifiMo]

I hate to say this but what a cockeyed stance for that place to take. Surely their place should be to provide the support necessary to help your friend live as INDEPENDENT a life as possible. I think you need to help your friend investigate this place thoroughly before making any commitment. The reason I say this is because of the dreaded dementia word. A lot of places like this won't take dementia patients because of all the additional problems that the illness can cause - eg wandering, unsociable hours, knocking on folks doors late at night. It could be that the reason they are asking if she is already in receipt of care is so they can then refuse on the basis that if the dementia is already advanced to the point where care is needed then the place is not suitable for her.

Friends of my mother were fairly well off and the husband had some physical mobility type problems the wife however had early onset dementia. They sold their house and bought a posh apartment in one of these complexes. I suspect that they were accepted one on the basis of the amount of money they had and two on the basis of his and not her illness. Well they moved in and their lives were made hell once her dementia took hold. She didn't recognise the place as hers. Was forever going missing. The neighbours were complaining with all the coming and goings day and night. They were then put under pressure to leave and buy somewhere else. The housing market however had slumped and folks weren't looking to move to the new posh retirement place any more - they were staying put. Unfortunately the husband died and where they thought they had a problem before this increased 10fold as the wife was out of control. Their daughter had to return from Australia to try and sort things out. Under pressure from the other residents the lady was then sectioned. Moved to a care home. The daughter was then left with a white elephant of an apartment that had cost nigh on half a million and couldn't have given it away! So lesson learned is that they will say and do a lot of things to get your money but are intolerant in all directions if dementia rears it's ugly head.

This place your friend is looking at might be different. By saying you need to help her though, I mean you need to ask for things like their residency agreements and care agreements, that sort of thing. Check if there are exclusions in any way for people with dementia.

This is not intended to frighten your friend off. More so that she can find a place that is going to support her going forward and where she will feel safe and secure, particularly in the longer term.

Fiona

 

[Dagne]

Great cautionary advice here! This is a social landlord, so I think in this case, it's not dementia screening, it's more a case of the standard response from local authorities, that people should be kept in their own homes as long as possible - or in other words, wait until a crisis forces you to move! She hasn't been refused, this is just the wording of their eligibility. I can understand that it's not a general retirement home, but in the case of someone who is starting to experience mild symptoms, it makes sense, if they themselves are willing, to 'future proof' their next move so that it lasts as long as possible.

I do recognise what you are saying about retirement communities, possibly more adapted to physical frailty than to dementia. I really want to win the lottery and set up a 'home for old hippies' with my friends, where we can design it on the basis that we accept that statistically, some of us will get dementia, and build in the extra care to cope with that eventuality. I feel sorry for people in posh retirement places with the neighbours ganging up on them. Fine if the person has to move for their own safety, but it's so unfair that eccentric or even annoying behaviour is seen as somehow the person's fault

 

[Chrissie1]

Hi Dagne,

My mum moved into supported housing (housing association) when she was early to mid stage of Alzheimer's dementia. She's been there for 2 years and she has been relatively happy there. However, she has wandered twice in that time and some of the other residents have short tempers and no understanding or caring about her condition so get very irritated with her. She has a very short attention span and does have mood swings which doesn't help. We have now been 'asked' to move her and the SW has said she now needs to be on an EMI unit but the fact that she is still very active and likes chatting means finding a suitable place has been quite challenging. We deliberately avoided the 'retirement village' type of place feeling that social housing would be more closely monitored by the relevant authorities and that there would be more focus to ensure relevant care & support was available.

I think the supported housing would be fine but agree that getting the SW on your friend's side is critical as they can make representations to the panel that make the decisions on who gets to move in.

By the way, I think your 'home for old hippies' ...... is a great idea!

 

[Kevinl]

Great cautionary advice here! This is a social landlord, so I think in this case, it's not dementia screening, it's more a case of the standard response from local authorities, that people should be kept in their own homes as long as possible - or in other words, wait until a crisis forces you to move! She hasn't been refused, this is just the wording of their eligibility. I can understand that it's not a general retirement home, but in the case of someone who is starting to experience mild symptoms, it makes sense, if they themselves are willing, to 'future proof' their next move so that it lasts as long as possible.

I do recognise what you are saying about retirement communities, possibly more adapted to physical frailty than to dementia. I really want to win the lottery and set up a 'home for old hippies' with my friends, where we can design it on the basis that we accept that statistically, some of us will get dementia, and build in the extra care to cope with that eventuality. I feel sorry for people in posh retirement places with the neighbours ganging up on them. Fine if the person has to move for their own safety, but it's so unfair that eccentric or even annoying behaviour is seen as somehow the person's fault

Pretty much sums it all up for me, I'm looking to do the "future proofed" one move thing for my wife's sake, but do you go to a gentrified retirement home and risk her getting worse and getting frozen out or just get a flat anywhere? I'll buy a lottery ticket and if the numbers come in I'll give the lot to Dagne's Towers and we can all go live there be like Fawlty Towers but not it Torquay (hopefully).
Seriously though is there an issue that it's her home and she actually won't move, be a load of obstacles and reasons why not all pop up, if so you have a problem, if there is acceptance about the move then keep looking but don't push.
K

 

[Dagne]

Pretty much sums it all up for me, I'm looking to do the "future proofed" one move thing for my wife's sake, but do you go to a gentrified retirement home and risk her getting worse and getting frozen out or just get a flat anywhere? I'll buy a lottery ticket and if the numbers come in I'll give the lot to Dagne's Towers and we can all go live there be like Fawlty Towers but not it Torquay (hopefully).
Seriously though is there an issue that it's her home and she actually won't move, be a load of obstacles and reasons why not all pop up, if so you have a problem, if there is acceptance about the move then keep looking but don't push.
K

More great advice, thanks K and Chrissie - you can definitely move into Dagne Towers, as long as we can always have a laugh!

Maybe I was overly idealistic about assisted living, it is just the dilemma of feeling she won't be safe in the medium term in an unsupported flat (the one she has her eye on is not even a retirement flat), but it's many years too early to be looking at CHs. Maybe she just needs to have a personal alarm and hope the move to the flat lasts long enough for her to enjoy it somewhat, and for the move to be worthwhile.

It seems to me that in the States they have a wider range of large communities which are staged to the person or couple's level of need. They may need to move from a flat to a room, but at least they stay in the same environment. There are a few here in the UK, but not available in more than a few counties.