Cost of care home for elderly parent with Dementia

[fieldhouse]

This might be upsetting for anyone with elderly parents / experience of dementia. I don't mean to come across crass discussing the costs of it all but I'm just looking for honest answers as it's something my family is navigating at the minute. Can anyone explain to me the way that funding social care for the elderly works in England please? It's all new to me. I've looked it up online and know that new legislation is (possibly?) happening in October this year introducing a cap, but I'm really unclear about how it all works at present and would value hearing others experiences.

My father is 86 and has Dementia. He's been living at home with my 82 year old mother but has had a number of falls. The most recent one resulted in a hospital stay where he caught Covid and as a result of the Covid and the upheaval he's now deteriorated to the extent that he doesn't know where he is or what is going on. He's threatened to kill himself, and be violent, and is unable to take himself to the toilet so it is looking like a care home with proper care will be needed as soon as his hospital stay ends.

My parents own their own home which is worth around £400k (South East) and have a bit of savings - not sure how much.

Will my mother need to sell their home to pay for care home? Apparently the local nursing homes in their expensive part of SE can cost up to £2000 per week which sounds extraordinary!

Let's say they have £20000 in savings (I'm guessing) that will be used up pretty quickly.

I know they are in a very fortunate position compared to many in owning their own home in the first place.

Can anyone tell me how it all works?

I'm not for one minute thinking about our inheritance or anything, but my mother has said she thought there'd be nothing left for me or my sisters and she was very sad about that - having worked their whole lives.

I know the system is shit and successive governments have done nothing. I'm just trying to advise my mum as best I can.

Anyone else found themselves in a similar position and how have you accessed the care needed financially?

Also, on a broader note, my husband and I were discussing it and saying it makes us think is it really worth it working hard all your life? Is it better to end up with nothing or be a billionaire?

Lots of good advice here.

Also worth being aware that the reforms the government had proposed implementing have now been postponed so there won't be anything different happening around funding for care for a while yet.

commonslibrary.parliament.uk/research-briefings/cbp-9315/

If you have £25 k in savings and that goes on paying fees, what happens when it is all gone? At £2000 pw it is not going to last long is it?

The local authority start paying towards care before it all goes as explained by someone earlier in the thread. With prices for care as they are unless you are mega rich, no-one is going to be able to self fund for long although you have to bear in mind that there is the cared for person's state pension, private pensions, attendance allowance which can still be claimed whilst self funding and some people might chose to rent out their home etc to help fund care. When all the money is gone then property is sold to pay for care unless a spouse is still living there. Not all homes are 2k a week.

@Babyroobs Thanks very much, scary times we are living in. If you are a woman of a certain age , living without universal credit, without state paid for nursery care, working less hours as not living near family due to husband in the military etc during your working years, you might have just your state pension coming in, less than £200 pw. Wonder what sort of care home would be available? Maybe the AI robots will come on board to help!

I think it is quite scary for low earners ( like myself) who really are never going to be able to save a significant amount for retirement and so very unlikely to be able to afford care. I visited a care home a few weeks ago as part of my job and it was £1500 a week. The elderly ladies said they only really had a bit of help with showering on a couple of days a week, they weren't highly dependent or bedbound or anything. The dining room looked lovely- white linen tablecloths etc but the rooms were really nothing special. My own elderly dad who is 85 but fortunately still very fit and active keeps his savings just below the threshold to avoid future care fees but then I'm not sure he has thought through that having more savings could buy you a better standard of care home but then as others have said how long could you afford to stay in the better care home unless you are mega rich. My hope is that my dad doesn't start to really decline for another 5 years, at which point I can retire at 60 to care for him. Of course no one ever knows if the level of care required would need a care home though.

And this may sound awful to say but the other 3 parents of mine and dh have all died very suddenly without ever needing any kind of paid care. It has kind of been a relief in some ways that it happened that way although sudden death is never easy. We have not had to face this so far but think we will in the future with my dad.

My parents were lifelong savers and it mattered to them more than anything that they left us lots of money.

They both died very quickly and quietly (and very old!), which is exactly what they would’ve wanted. The thought of their savings or capital going on their care was anathema to them.

The next generations will be more accepting of having to potentially pay for care in later life.

Hi OP, I went through this with dad two years ago.

care home fees were around £800 PW, we’re in the north and this was in the middle of Covid, there were lots of spare places due to the horrific number of deaths. Fees and quality of care varied hugely.

social services left the marital house alone as mum still lived there but we had to declare all accounts in dads name and half of joint accounts. As his share was around £30k dad had to pay all of his fees from this until he went below the threshold (around 16k?) then the council would have paid UP TO £560 a week. We (family/mum) would have had to pay the difference otherwise he would have had to move to a cheaper council run home that came in at or under £560.

sadly, dad was a victim of care home Covid and died three weeks in.

this is why I cannot understand people that give away their wealth to avoid care fees. The council run, minimum fee homes I wouldn’t leave a dog in.

Worst time of my life, dealing with this.

I think it's a disgrace that successive governments have sat on this issue for years, let's see if the care cap will do anything or if Labour has anything better to offer. I live in Germany and elderly care is seen as a type of insurance you pay into, so like NI contributions etc you pay a chunk into your future care. Then when you need it you do still have to pay, but manageable. Everyone may need old age care and governments need to account for it in a sensible insurance system like with health and everything else. To not have any system beyond each person suddenly having to use all their life savings and assets is ridiculous - it's like being an uninsured person in the US suddenly needing expensive treatment. I'm sure that a better way is possible...

like here you pay 1,500-2.000 Euro a month and the insurance pays the rest. It's still not peanuts but still more manageable.

People should be careful about giving their money away. It is often classed as Deprivation of Assets - and councils are going to court with these cases, to get the money back.

There's also the point that if councils do end up funding a care home, the person will be placed in the cheapest - which aren't necessarily the good ones.

"In the Home" care (around here), is a nightmare to get at the moment, unless people can self fund it.🙁

As someone who successfully recouped nursing home fees through CHC (took two appeals and two years and from one of the worst CCGs in the country), take a look at the Decision Support Tool online. If you have a nurse/medical friend get them to help you.If you score your loved one highly, it would be worth starting the process officially and getting a professional to then complete the DST. Start keeping every email, discharge letter, medication list, record conversations about your relative's health.Dont try and do too much yourself...the more times you phone 111, a GP or another medical professional, the better..its all evidence (unfortunate state of affairs, but that's what you need). The more unpredictable your relative is the better. And remember a managed need is still need.

Contact Beacon as advised before They helped me get a total refund of my OH's care fees (both when he was at home and when in a nursing home) - unfortunately after he had died and after I had sold my house to pay the fees.

I employed Beacon when I got to the final NHS England appeal.I hadn't realised they were funded by NHS England to advise.

If he has a (private or Company) pension other than State pension, half of that will also be disregarded if your Mum would be financially affected.
Has he been assessed for CHC funding?
A neighbour got this for vascular dementia even though they are very well off.

Also useful to note that if your loved one deteriorates and may be entering a terminal phase (I hope this is not the case) and the hospital want them out, you can ask for Fast Track CHC Funding. This would cover their stay in a home, but only for 6-12 weeks. My dad's perked up, so is being reassessed in the home and he may have to start paying.

On the whole I feel native Brits are an entitled bunch, blaming the government for all their shortcomings. However, old age is not a choice and the majority have worked hard in their working life to contribute to society. There should be more affordable options and it should be a more fair system. Whilst I don't think wanting to leave things for your children should be taken into consideration, it is not right that some people go through life being helped all the way through and others have to keep paying

I'm sorry you're going through this, I know from the experience with my Mum how difficult this all is.

Several people have mentioned Continuing Healthcare Funding and how hard it is to get. You will get excellent advice from Beacon, which someone has given a link to earlier, and they will arrange for a free consultation with one of your expert advisers. Their advisers are excellent. However, there are several companies who advertise quite extensively, such as Compass, who will handle the application process for you, for a hefty fee, but do beware of them. I was told by Compass that my mum had a very strong case for funding and I got them to represent me - things were really traumatic with my mum's situation at the time and I didn't feel able to add to the stress by handling the claim myself. Needless to say, funding wasn't awarded and i was £5000 out of pocket. When I discussed the appeal with compass, they then decided that her case was only borderline after all. I was represented by a very junior person who barely spoke during the decision support tool meeting and I was very unhappy with the service they provided. I'm now handling the appeal myself, with advice from Beacon. I don't expect the decision to be reversed but feel I owe it to my mum to appeal. As others have said, it's very very difficult to get the funding but it's definitely worth trying as I know of several residents from my mums care home who did receive it.

What I don't get is:

1. Elderly care is free in Scotland.
2. Elderly care in Wales costs a maximum of £100 per week.
3. Elderly care has to be paid for in full in England if you have more than £16k

Whoever is responsibility for his finances can obviously spend what they like out of his funds if it's for his wellbeing, but in many cases it's not wise to pass assets on or dispose of them, one from the point of view of the 7 year rule and tax, the other from the point of view, the benefit system won't be willing to step in and support his fees if his share of the money goes and there's no guarantee whoever has received them will have them readily available to support him - I used to be a Probate/Elderly Client Secretary and the solicitor I worked for always strongly advised against this.

My dad very definitely paid more than £100 a week for elderly care in Wales, fairly recently. Is this a brand new law?