Can anyone help me with year on year care home cost increases? Not sure if this is normal

[RuddyHellItsSoftCell]

Hi, dm’s dementia is at the point where 3 carers’ visits a day isn’t enough. Her behaviour recently meant neighbours called the police, who called an ambulance and she’s been taken to a care home (that we previously looked round) for 3 weeks respite. We were looking into her staying there long term/forever however the contact states a 5.9% increase each year. This has really scared us as costs will nearly double over 10/11 years of this. She’s relatively young (76) and physically pretty healthy so I think we need to be aware she could be there for 20 years plus.
Is this year on year increase normal? Thank you if anyone can help with this.

So as not to ‘drip feed’ she also has a borderline personality diagnosis which has historically included psychotic episodes which she has been hospitalised for a no of times prior to the dementia diagnosis. I was hoping to apply for continuing healthcare funding but the more I read about this the more pessimistic I feel.

My DM has lived in three places across six years and roughly 3%, 5% and 3% pa.

Thank you for replying. It worries me so much. She has what I consider to be quite a lot in assets, but it will only actually last about 4-5 years. I can’t seem to find out what happens after that.... it seems like anything the ‘state’ contribute, there will always be a short fall. What would we do if she does live a long time and we can’t pay for it? It all seems so difficult at the moment. I just want her to be well looked after in a nice, suitable place for as long as she needs. 3% rise does sound better than 5.9%. Maybe I need to keep looking.

Get in touch with Age UK. They will give you advice and support.

Get her assessed for nhs continuing care, not means tested. If she is unable to live independently due to her medical condition you have a good case

On an unpleasant but practical note the average time from diagnosis of dementia to death is 7 years. surviving 20 years in a dementia care home is fairly unheard of. The reason care providers ask for 3 years funds is that is the average length of stay.

You are correct that she is unlikely to get CHC unless she has significant physical needs as well as the dementia

On the other hand maybe she is entitled to S117 funding. Has she ever been detained under S3 MHA in any of her MH hospital visits as this would entitle her to S117 funding which is free and non means tested. If it was S2 and not S3 this sadly does not count for funding.

If none of the above applies then she funds her own care until her funds drop below 23,500 and then the local authority will pick up the funding after that. The only time they might refuse to do so is if she was in a very expensive care home. If that was the case then they might want to move her but I think it's unlikely it will get to that stage.

Sadly yes, it is is quite common for such increases.

You should certainly ask for a CHC checklist to be done but it sounds unlikely she will be awarded

If you don't get CHC but are in a nursing (NOT residential) home then you get FNC nursing contribution which is a small amount but still worth having so you should ask for her to be assessed for CHC. The care home will be used to the process and able to help you.
If she is just in residential care then it's pretty impossible to get CHC.

I would place her in the nice place she is in if you think it's the best and worry about the future later.
The worst that can happen is that the LA move her to a cheaper place and then at least she'd have had 3-5 years nice care rather than eek out the funds at a less good place.
Under no circumstances can family be held liable to pay. A few months before she runs out of money you contact the LA and ask a financial assessment but it might never happen.

Don’t panic, is the first step.

Then sadly, you can understand the life expectancy of people living with dementia quite well and also care home life expectancy. There are prognostic indicators that help healthcare staff plan care needs quite accurately.

Your mother has age and sex on her side but severity of symptoms and co-morbidity working against longevity. The median live expectancy from a dementia diagnosis is about 6 years from onset of symptoms and about 3.5 years from admission to a care home. Unfortunately, your mother is quite unlikely to live for much longer than 6/7 years as a maximum and probably less. Most people admitted to care homes die within about three years, less if it’s an admission for nursing care.

If you are in England, self funding for care is capped at £16,000. That means the assets can be used down to the last sixteen thousand pounds, which people are entitled to keep. Once you reach that point, local authority funding comes into effect.
If your mother has particularly complex needs, or develops additional needs, you can apply for continuing care funding. The home should be able to advise if she meets the criteria.
Once you ‘run out of money’ the amount payable to the home is often reduced for local authority contracts. It’s in nobody’s best interests to move someone approaching life’s end and very unsettling for someone with advanced dementia. It isn’t often done and shouldn’t be done for purely financial reasons - there is potential that any suggestion of movement could be a safeguarding concern as it places a vulnerable person at risk of harm.

I would suggest a frank conversation with the home registered manager. They should understand the specific circumstances for your mother and should be beginning to make longer term plans for her care.

Do you or anyone else have LPA health and finances? If so, you need to enact them to ensure full access to all information and involvement in decision making. If not, you might want to apply to Court of Protection for a Deputyship.

This was true for my grandparents home. It's awful, such a worry but absolutely nothing you can do about it. Sorry OP.

Thank you so much all of you who have replied and given me advice. She’s had so many problems I thought it would get less stressful when we made the move to 24 hr care not more! But this thread has already helped calm me a lot. I will look into all of this, thank you.

Me and my brother have lpa jointly and severally for both health and finances. It was hard to get as dm was v mistrustful that we were trying to fleece her and we also had to get the hospital at the time to assess her as having capacity, but I’m so glad we have it now.
We will be talking to the care home manager today. She has already helped people get the continuing healthcare funding so I think she’ll be able to help us with that.

Don't bother with trying for CHC funding now - there's no way she'll get it based on what you've said. I know this from working as a SW - still fighting a case for it for a client on death's door.

If you place her and her funds run down to the £23250 threshold a contact the local authority for a self-funding pick-up. They will assess her and if she's eligible to be in a care home (you wouldn't believes the amount of people who wouldn't be !) then they will pick up funding.... however they will only fund best value so may want to move her somewhere cheaper. You'd have to make a case for her best interests to stay.

It's wise to place her somewhere where they also place local authority funded people to start with or pick somewhere not too extortionate.

Although I don’t dispute sunmoonstarry’s experience, DM should be assessed for CHC before being means tested to fund her own care.
The criteria for getting CHC are very odd. If you can convince CHC she has severe needs in at least two areas she should be entitled to receive it. Easier said than done,I know.

Thanks all. I’m trying to get written records of the mental health side as well as the dementia stuff as it is so complex. Lots of advice for me on this thread, and sorry for others who have been/are going through this with loved ones. I wouldn’t wish it on anybody. I’m looking at cheaper care homes but am being honest about her needs. We are also looking at getting advice from an independent financial advisor and I will look at any charities that can provide support too. I feel very lucky to have siblings as we are helping each other navigate this.

Do look into whether she has ever been detained under S3. You can ask the mental health act administrator at the hospital where you think she may have been detained. If you have ever been detained under S3 you have a right to free aftercare (S117) which is non means tested and is in perpetuity unless you are separately discharged from S117 and the onus is on the detaining authority to show that.

Not many people know about it but a number of people have managed to get free care in old age via a historic S117 entitlement so you may get lucky.
It's one whole hell of a lot easier to prove entitlement than CHC which is subjective. It's just were you ever detained under S3. If you were you have S117 funding entitlement.

Stop trying to sort this out yourself.

Tomorrow morning ring the local authority your mum lives in and request a Care Act Assessment.

If at any stage anyone tries to fob you off because she is a 'self funder' continue to insist that she is entitled to an assessment.

As part of this assessment they will determine what level of care she needs and if she is eligible for fully funded continuing healthcare or a funded nursing contribution.

They should also assist you with finding a care home if that is the right option, although some Local Authorities are more helpful with this than others.

She only has to self fund until her finances drop to £23500. After that she will pay on a sliding scale downwards.

If the care home she/you choose is more expensive than the LA will pay when she drops below the threshold you will have 3 options.

1. Appeal to the LA to pay the higher rate as moving her would be detrimental - depending on how unwell she is this does have a good chance of success.

1. Someone else in the family pays the difference between what the LA will pay and what the care home wants (this is called a 3rd party top up)

1. Move her to somewhere within local authority rates if she can tolerate the move.

I'm afraid though I do have to echo other posters. Dementia is a terminal disease and once it is severe enough to be diagnosed people don't tend to live with it for lots and lots of years, no matter how physically healthy they are to begin with.

My advice as always in these situations is to use your mums money to pay for the best care she can afford.

Good shout re the 117 as once you're on it it's difficult for them to take it away!

Thank you. I’m not sure about years and years ago (mh issues since before I was born) but as far as I’m aware she’s been kept in before under deprivation of Liberty, but usually just the threat of it has been enough to make her agree to a hospital stay without it being used, if that makes sense. If she had resisted more they might have used more powers which could be helpful now(!).

I hear what you’re all saying about life expectancy, and it sounds so fucking awful to say, but it’s actually a bit of a comfort to know she most likely won’t have to live like this for decades (especially if once the money runs out the care might not be optimum). I hope that doesn’t make me sound heartless, in fact it’s quite the opposite

She does have a reasonable amount of assets, and I’ve been worried that local authority won’t tell us anything until money has run out, and I can’t live for 4 years with that worry hanging over me. Great advice to contact la now - we will do this straight away. I need answers, and at the moment I just have loads of questions. Thank you all for helping me to move forward practically. At least I feel like I’m doing something to help, even if I can’t make her better and get my mum back (I know that’s impossible and in a way some grieving stages have already started happening, which in a way I have to see the positive in: at least I get to sort the shit out over a longer period of time).

I hope I haven’t offended anyone with this post, it’s just quite nice to get it all out.

I know this site gets shit for aibu etc but I got great support as a new parent and knew I’d get it for this too. I haven’t been disappointed

I have not read the full thread... but, my then 80 year old mother was diagnosed with dementia (mixed) about two and a half years ago. I got in touch with a financial adviser who specialises in elderly people's advice.

My mum has a generous pension from being a teacher and savings of around £400k. We had to move her into a care home and together with the adviser I bought an annuity to pay for her care. If she lasts five years, it will have paid for itself and any longer and we will in effect have made a return on it. Obviously if she dies in the next 18 months there will be a loss but frankly, knowing that her fees are covered for the rest of her life is very helpful. We used about half her savings to buy the annuity the rest has been invested in moderate risk stocks and shares, so far it has grown and her savings are increasing.

My advice would be to talk to a chartered financial adviser who has the elderly financial planning qualification and see what they suggest- you may not find that as much needs to go in care home fees as you think, especially as she is still quite young.

This stuff is awful to have to take on, but you have a duty with POA to try to maximise the benefit for her. Frankly I'd be a wreck if the fees were not taken care of.

@motogogo

Get her assessed for nhs continuing care, not means tested. If she is unable to live independently due to her medical condition you have a good case

it is extremely difficult to get continuing healthcare funding. even people disabled with parkinsons are rejected. there are vast numbers of people who are unable to live independently because of a medical condition who do not get it. what should be and what is are two different things. you need to prove a high need of nursing care, not just supervision or personal care/hygiene. if you want to pursue it, i suggest you get an independent expert nurse and pay for her assessment/ advocacy.

OP, have you thought of having live-in care.
why not contact a few agencies, eg bluebird, and get some estimates.
if your mother was self-funding in a care home, and her money was exhausted, then the council would have to fund her.
but they might well move her to a cheaper place, or somewhere they have negotiated a better deal with.
you would not have to pay. there is no responsibility to do so. legally.

I hope I haven’t offended anyone with this post, it’s just quite nice to get it all out. Don’t worry, we’ve all experienced the realities of care. Pop over to the Cockroach Cafe and see if you can squeeze on to the Bad Daughters’ Bench. Be warned, it’s a bit full.

Thanks @MereDintofPandiculation will try and find it. Think a long term support thread will definitely be useful here