Dementia Awareness

[Lord Tyrion]

The £23k limit is changing to £100k in October (this year). This means that some state contribution will be provided when the capital of the person in care reduces to £100k - if indeed the capital was greater than £100k to start with. Also changing in October is that there will be a lifetime cap of £86k on care/nursing costs. These costs do not include the cost of accommodation, meals, entertainment etc which must be paid by the person in care. Once the cap is reached the state will cover all subsequent care/nursing costs for as long as it is required.

Interesting to hear. My knowledge of what is happening going forwards has reduced as my MiL died in December. The above sounds a positive move but the crucial aspect is what percentage is not included, the accommodation, meals etc. If that ends up being 70% of the cost, or whatever, then it's just smoke and mirrors. Do you know if any councils or care homes have broken that down yet?

 

[SwingsitlikeHogan]

Interesting to hear. My knowledge of what is happening going forwards has reduced as my MiL died in December. The above sounds a positive move but the crucial aspect is what percentage is not included, the accommodation, meals etc. If that ends up being 70% of the cost, or whatever, then it's just smoke and mirrors. Do you know if any councils or care homes have broken that down yet?

Haven‘t seen any home give their breakdown. But the example I read (maybe in Age UK) was £60k/Year split £25k/£35k care/accom. I’m assuming this might be representative of a typical breakdown. So full £60k costs are self-funded for up to about 3.5yrs, thereafter no care costs so self-funded element reduces to £35k/year.

 

[RichA]

The £23k limit is changing to £100k in October (this year). This means that some state contribution will be provided when the capital of the person in care reduces to £100k - if indeed the capital was greater than £100k to start with. Also changing in October is that there will be a lifetime cap of £86k on care/nursing costs. These costs do not include the cost of accommodation, meals, entertainment etc which must be paid by the person in care. Once the cap is reached the state will cover all subsequent care/nursing costs for as long as it is required.

That's really interesting. Thank you. I haven't seen it publicised, so will do some research.
MiL and Dad are both self-funding and we have LPoA so are sighted on all bills. I've never seen the costs broken down so will be asking for itemisation in future.
Dad's care home in a Notts village is a non-profit run by a local authority housing care association and costs £52000 per year.
MiL is in a private place in Oxfordshire. £90000 per year and not nearly as nice.
Don't assume more expensive is better.

 

[RichA]

Sorry to hear your MiL died @Lord Tyrion
Must have been a difficult christmas period for your family. I'm glad you're staying on the thread with your helpful experience.

 

[SwingsitlikeHogan]

That's really interesting. Thank you. I haven't seen it publicised, so will do some research.
MiL and Dad are both self-funding and we have LPoA so are sighted on all bills. I've never seen the costs broken down so will be asking for itemisation in future.
Dad's care home in a Notts village is a non-profit run by a local authority housing care association and costs £52000 per year.
MiL is in a private place in Oxfordshire. £90000 per year and not nearly as nice.
Don't assume more expensive is better.

Apologies…the change has been delayed until October 2025. I thought it had but when I checked before posting I picked up an old report on the change. I’ll update my earlier post. Here’s the info from Care UK

Care home fees cap 2025 | Government cap in England | Care UK

A cap on the amount anyone in England will need to spend on personal care will be introduced in 2025. Here’s what you need to know.

www.careuk.com

 

[Lord Tyrion]

Sorry to hear your MiL died @Lord Tyrion
Must have been a difficult christmas period for your family. I'm glad you're staying on the thread with your helpful experience.

Thank you. It was not a fun time, stating the obvious really. In the end it was a blessing. She had no quality of life, she was simply existing in a very poor way. Still sad, but sad for the person she was.

The system is geared against people with dementia, their families more so. Apart from the finances, the biggest bugbear for my wife, who drove this for her mum, was the inept nature of the whole procedure from start to finish. My mum has cancer, thankfully under control right now. From the first moment of diagnosis her treatment has been excellent, so many things, people, depts etc kick into place. Her treatment has been joined up. For my MiL, and others with dementia in our experience, nothing could be further from the truth. The wheels grind slowly and painfully, you are obstructed along the way, information is fractured, depts do not communicate with each other. If only they could get that right it would be more than half the battle, way more than half. It's hard enough dealing with someone with dementia, watching them deteriorate. To fight a system at the same time............

It's a cracking thread this. Hard at times, but very worthwhile.

 

[Rooter]

Nail on the head there LT. sorry for your family's loss, but I fully understand the blessing part.

 

[RichA]

Thank you. It was not a fun time, stating the obvious really. In the end it was a blessing. She had no quality of life, she was simply existing in a very poor way. Still sad, but sad for the person she was.

The system is geared against people with dementia, their families more so. Apart from the finances, the biggest bugbear for my wife, who drove this for her mum, was the inept nature of the whole procedure from start to finish. My mum has cancer, thankfully under control right now. From the first moment of diagnosis her treatment has been excellent, so many things, people, depts etc kick into place. Her treatment has been joined up. For my MiL, and others with dementia in our experience, nothing could be further from the truth. The wheels grind slowly and painfully, you are obstructed along the way, information is fractured, depts do not communicate with each other. If only they could get that right it would be more than half the battle, way more than half. It's hard enough dealing with someone with dementia, watching them deteriorate. To fight a system at the same time............

It's a cracking thread this. Hard at times, but very worthwhile.

Totally agree. Mum died with dementia 5 years ago, but it was just one element of a raft of health issues and we covered it up or ignored it through ignorance until it got really bad. Once it was diagnosed, the help Dad and I got in looking after her in their home was pitiful. Hospital and nursing care came along as crisis management, rather than a planned treatment.
Dad was a relatively healthy, independent 90-year old until December, when he had some problems that landed him in hospital and now a care home. I'm recognising some fairly clear signs of dementia that the home have agreed are present, but with recent experiences with my mother and MiL I'm not convinced there's any benefit in putting him through formal diagnosis, for the lack of treatments or additional care he'd get. He's already being looked after in a nice care home, so what's the point?

 

[SwingsitlikeHogan]

The decisions we are having to make at the moment in respect of care for my MiL - whether care home; daily carer visits with MiL in her home, or indeed 24hr live-in carer - are complicated by the fact that my 65yr old BiL is living in his mum’s house. He has few options for not doing so as he has very low independent means, and has a life limiting cancer (multiple myeloma) as well as at the moment being in recuperation and hopefully in remission from a quite separate throat cancer.

In looking forward to 3-5yrs for by MiL (and so past Oct 2025), we have to work out how my BiL can best be supported in or out of the family home - taking into account arrangements for my MiL. Though of course for as long as he remains resident in the home it will not be included in any self-funding assessment that will be made.

In truth there is just too much uncertainty everywhere…we just have to get my MiL and BiL discussing with each other their own individual needs as well as where they overlap. And that is, in itself, very difficult to get started

 

[RichA]

The decisions we are having to make at the moment in respect of care for my MiL - whether care home; daily carer visits with MiL in her home, or indeed 24hr live-in carer - are complicated by the fact that my 65yr old BiL is living in his mum’s house. He has few options for not doing so as he has very low independent means, and has a life limiting cancer (multiple myeloma) as well as at the moment being in recuperation and hopefully in remission from a quite separate throat cancer.

In looking forward to 3-5yrs for by MiL (and so past Oct 2025), we have to work out how my BiL can best be supported in or out of the family home - taking into account arrangements for my MiL. Though of course for as long as he remains resident in the home it will not be included in any self-funding assessment that will be made.

In truth there is just too much uncertainty everywhere…we just have to get my MiL and BiL discussing with each other their own individual needs as well as where they overlap. And that is, in itself, very difficult to get started

There's no reason why your BiL can't request a SS care needs assessment for himself. Having a formal assessment including funding for both of them might give you all some clarity and ideas or at least be a means of getting some structure to the conversation.
I understand that it's difficult, but getting the conversation started has always been the hardest bit for us.

 

[clubchamp98]

Thank you. It was not a fun time, stating the obvious really. In the end it was a blessing. She had no quality of life, she was simply existing in a very poor way. Still sad, but sad for the person she was.

The system is geared against people with dementia, their families more so. Apart from the finances, the biggest bugbear for my wife, who drove this for her mum, was the inept nature of the whole procedure from start to finish. My mum has cancer, thankfully under control right now. From the first moment of diagnosis her treatment has been excellent, so many things, people, depts etc kick into place. Her treatment has been joined up. For my MiL, and others with dementia in our experience, nothing could be further from the truth. The wheels grind slowly and painfully, you are obstructed along the way, information is fractured, depts do not communicate with each other. If only they could get that right it would be more than half the battle, way more than half. It's hard enough dealing with someone with dementia, watching them deteriorate. To fight a system at the same time............

It's a cracking thread this. Hard at times, but very worthwhile.

A blessing in disguise, is a very hard statement to say .
but you are right .
it was exactly the same for me.
sad to think this but true.

sorry to hear about your loss.

 

[Robster59]

The £23k limit is changing to £100k in October 2025 (was originally to have been brought in October this year). This means that some state contribution will be provided when the capital of the person in care reduces to £100k - if indeed the capital was greater than £100k to start with. Also changing in October is that there will be a lifetime cap of £86k on care/nursing costs. These costs do not include the cost of accommodation, meals, entertainment etc which must be paid by the person in care. Once the cap is reached the state will cover all subsequent care/nursing costs for as long as it is required.

Good to hear, although too late for a lot of people.

 

[Robster59]

Totally agree. Mum died with dementia 5 years ago, but it was just one element of a raft of health issues and we covered it up or ignored it through ignorance until it got really bad. Once it was diagnosed, the help Dad and I got in looking after her in their home was pitiful. Hospital and nursing care came along as crisis management, rather than a planned treatment.
Dad was a relatively healthy, independent 90-year old until December, when he had some problems that landed him in hospital and now a care home. I'm recognising some fairly clear signs of dementia that the home have agreed are present, but with recent experiences with my mother and MiL I'm not convinced there's any benefit in putting him through formal diagnosis, for the lack of treatments or additional care he'd get. He's already being looked after in a nice care home, so what's the point?

You may be able to get further financial assistance for him. Also, if it dementia worsens, his level of treatment may increase and you could get support for that.
I would agree with @Lord Tyrion , this is a cracking thread for annoying going through this situation, and trying to get any support for people with dementia is a total nightmare. I don't think people are properly training in how to handle it, and they rely on the family to do the caring and handle it all. You get given minimum support, and if you are daft enough to believe what they say, and don't push (threaten legal action sometimes), then you will just get fobbed off.
My heart goes out to all those who are going through this at this time, and those who have been through it.

 

[Tashyboy]

That's really interesting. Thank you. I haven't seen it publicised, so will do some research.
MiL and Dad are both self-funding and we have LPoA so are sighted on all bills. I've never seen the costs broken down so will be asking for itemisation in future.
Dad's care home in a Notts village is a non-profit run by a local authority housing care association and costs £52000 per year.
MiL is in a private place in Oxfordshire. £90000 per year and not nearly as nice.
Don't assume more expensive is better.

Hi Rich, just outta interest what part of Notts is your father at.

 

[Tashyboy]

Thank you. It was not a fun time, stating the obvious really. In the end it was a blessing. She had no quality of life, she was simply existing in a very poor way. Still sad, but sad for the person she was.

The system is geared against people with dementia, their families more so. Apart from the finances, the biggest bugbear for my wife, who drove this for her mum, was the inept nature of the whole procedure from start to finish. My mum has cancer, thankfully under control right now. From the first moment of diagnosis her treatment has been excellent, so many things, people, depts etc kick into place. Her treatment has been joined up. For my MiL, and others with dementia in our experience, nothing could be further from the truth. The wheels grind slowly and painfully, you are obstructed along the way, information is fractured, depts do not communicate with each other. If only they could get that right it would be more than half the battle, way more than half. It's hard enough dealing with someone with dementia, watching them deteriorate. To fight a system at the same time............

It's a cracking thread this. Hard at times, but very worthwhile.

unfortunately we are now in a place where your main paragraph firmly hit the nail on the head.

 

[RichA]

Hi Rich, just outta interest what part of Notts is your father at.

Morning Tash. He's in Linby. Nice little village, but it's not on the way to anywhere. I grew up 3 miles away and visited it for the first time in my life just over a month ago.
Now I'm there every week. I can recommend the Horse & Groom for pub grub and craft ale, if you're ever that way.

 

[Tashyboy]

Morning Tash. He's in Linby. Nice little village, but it's not on the way to anywhere. I grew up 3 miles away and visited it for the first time in my life just over a month ago.
Now I'm there every week. I can recommend the Horse & Groom for pub grub and craft ale, if you're ever that way.

It’s a gorgeous little village.

 

[SwingsitlikeHogan]

There's no reason why your BiL can't request a SS care needs assessment for himself. Having a formal assessment including funding for both of them might give you all some clarity and ideas or at least be a means of getting some structure to the conversation.
I understand that it's difficult, but getting the conversation started has always been the hardest bit for us.

BIB…100%…me and my Mrs just want her Mother and brother to talk with each other and us about their individual needs so we can help them put some sort of 5yr plan in place.

 

[SwingsitlikeHogan]

I have a close friend whose BiL has early onset dementia brought on by Parkinsons. He was receiving care at home but was becoming verbally and physically violent so that stopped and he went into care home. But the behaviour continued and the care home had to ask him to be taken out…so into to hospital he went.

I believe he is still there a couple of weeks on whilst they work out what to do…but he is calmer. Meanwhile my friend‘s sister is grateful of the period of respite. His sister and BiL are both just around 60. So very hard and desperate for all. I support my friend as best I can.

 

[AmandaJR]

I've started volunteering at my local hospital. Prior to this no experience of dementia. Mum died young and Dad in his 80's still bright as a button. It's been an eye opener for sure and I feel for anyone going through it, and their loved ones having to deal with the impact. Some seem lost in a world that's a good place but many in a dark, scary place. I'll admit to saying to my husband "if that's ever me...finish me off" unless I'm in the happy place where my world isn't reality but I'm enjoying the ride!