To wonder (setting aside immigration) how the elder care sector can be improved?

[PrincessSophieFrederike]

There's been so much recent coverage of how bad the situation in care homes is. Short-staffed, owners pocketing money that should go to the staff, elder abuse...

I don't want this to be an immigration debate. So setting aside that, what I wonder is how can we improve the care sector? Whatever amount of immigration we have, we will need workers from here as well.

It's very difficult as elder care is just the kind of job for which you need a specific type of person. The government can't just put people in it in some big initiative to get people into work. Two big things that would help would probs be higher pay (and probs deprivatisation of the care sector) & higher prestige, making it a job you train for & can progress in. It's disgusting the comments one can see in discussions (mainly nor here, but elsewhefe) where caseworkers are dismissed as interchangeable bottom-wipers. Our society needs to make changes so they are properly valued.

This ties in to attitudes to old age. I sympathise with people who supported assisted dying due to their personal experiences. But it feels very dangerous for the government to bring this in (even if in a limited way) without better safeguarding for elderly people. If the only government effort to help them is assisted dying, then it gives a disturbing impression...

I noticed that many people who supported assisted dying spoke of terrible experiences with family who had severe & irreversible dementia, & wanted to avoid this. The assisted dying Bill doesn't cover this though ad you need to be of sound mind. Is it not though possible for people to write their wishes down, making clear that if they develop dementia in that way, they don't want to receive excessive treatment? Many families speak of parents who wanted to not be given medication for repeated UTIs & pneumonia if they had severe dementia, but as they hadn't recorded their wishes, medication was repeatedly given. Surely this could be changed in other ways apart from assisted dying bills?

Another issue is at-home care vs care homes. One problem is that lots of elderly people now live further from family- maybe more extended families could help? But this ofc wouldn't change quickly, and would only be possible for people with relatively mild medical needs, or at least not ones which involve potentially dangerous behaviour like dementia. And there's ofc plenty of reasons why people might not want to live with a healthy patent, let alone one needing constant care.

. Some family friends can afford live-in carers for their parents, but obviously this isn't possible for a lot of people. And care agencies can be just as risky as care homes...

TLDR : What can we do to improve care homes, (leaving immigration issues aside)? The main things I can think of are deprivatisation, higher pay &training & status. Also much more stringent checks on quality of homes.

State ownership with minimum standards throughout including wages, staffing level and level of care. Enforce those standards.

It won't happen though as privatisation has been such a success, hence why our provision of water, gas, electricity and public transport is the envy of the world.

Always a great idea to have someone creaming off the top for money and at the bottom for standards.

Re your specific question about wishes, OP, yes, it’s possible to make your wishes crystal clear, if you have a Health and Welfare P of A. A DNR covers only resuscitation in case of the heart stopping.

You can add a paragraph to your P of A. Dh’s and mine read roughly:

‘If I should develop dementia, or any other condition where I am unable both to care for myself, and speak, with full mental capacity for myself, then I emphatically do not want any life-saving or life-prolonging treatment. I ask for palliative care only.’

It's a huge, complex, highly emotive topic with no easy or cheap answer. Some of the things which could help are:

• helping the elderly to remain at home / in the community by ensuring they live near or with family, live in a suitable house rather than holding on to a larger unsuitable home, providing at home GP visits and physios, providing grants to help adapt current homes, improving public transport and local services.

• bringing the care system into the remit of the govt, whether that's as part of the NHS or in its own system. De-privatisation and significant investment in supported living and new, purpose built care homes (too many care homes are in unsuitable old buildings).

• a mandatory qualification and professional standards system for carers, similar to that for nurses, doctors etc. Offering apprenticeships and on the job training to get these qualifications. Offering branch off qualifications and training such as in physiotherapy or mental health support. People going into the sector need to feel like there is some sort of career progression available, at the moment I think that is lacking.

• Lastly, and this is the part which is very uncomfortable to think about, an acceptance of the fact that, as a species, we're not really designed to naturally live into extreme old age as standard. Our modern technology and medicine allows us to do so but in many cases, this is at great cost to our quality of life. My poor grandmother spent the last ten years - ten years!! - of her life, completely distressed, in a care home. It was a good care home. However she had severe dementia for the last 15 odd years of her life, and was constantly reliving deaths of loved ones and constantly confused and upset about where she was. She was in and out of hospital more times than I could tell you with urine infections and similar. She was desperately unhappy and unwell, but not actively dying. It was a horrific thing for her to go through. 15-ish years of pure torture. Frankly, it would have been better had she been allowed to slip away years earlier. I don't think we're comfortable being honest about the fact that people are being kept alive in pain and in terror purely because we're uncomfortable with the moral issue of death, which is a natural process which happens to everyone on the planet. For my part, I'll sort myself out before it ever gets to that point while I still have control.

I think the attitude here is part of the problem, I'm not saying this in a horrible way, but as an observation that when the pp has described the level of care their relative receives your assumption (as is so many) is that the carers are at fault -
Why do the workers neglect the activities? Burnout? Compassion fatigue? Just don't care? None is an excuse, I'm just trying to understand why ..

But ime of working in care homes, quite a few different ones through agency and bank jobs as well as permanent positions the main reason that activities don't get done is not enough people to actually meet the residents every day needs appropriately, like feeding, toileting, bathing, Dr and nurse/allied visits, medication rounds etc. Not doing an exercise class doesn't have anywhere near the same impact that someone not getting fed, or toileted, or showered, repositioned does, so what would you prioritise if you were in that position? Who don't you shower, or take to the toilet so you can do some activities? Which resident?

The last place I worked was cqc rated as 'good' it was a locked unit caring for people with dementia, there were 20 residents, and 4 care staff. At least half of the 20 residents needed 2:1 for personal care and mobilising. Medication rounds happen 4 times a day, with the 'heaviest' being breakfast and tea time, taking up to an hour and that's when everyone was 'compliant' and it went smoothly. So that's 3 care staff now on the floor, and someone must remain on the floor at all times for safety, two people who need 2:1 for mobilising need the toilet at the same time.
The best training, progression and a hundred times the pay, and every person working in social care being the epitome of caring for other people and having the highest standards does not make them able to be in two places at once. Nothing can do that.
While I do agree with the points of better pay, progression and conditions, we need a more realistic approach to how many people are needed to actually provide the level of care expected.
And although this may have changed since I did care last, providers get to choose the ratios of staff to residents. The one I described above was 1 staff to 5 residents, when half of those need 2 staff for most aspects of their care. And that was rated as good.

Those conditions do drive the ones that really care out, I want to care for people properly, I'm good at it, but I can't when I have a lack of resources to do so, I'm a human being, it affects me to be in that situation and then to get blamed for the systematic failures and lack of resources is the icing on the cake really, especially when you're running yourself ragged, doing unpaid overtime and paying for your own equipment to do the job to try and mitigate against those failures. And who does that leave? People who are burned out by the above, who don't care enough to be bothered by it and those forced into it because it's a job.

I'm assuming most of the carers are female? Would male carers be needed then for lifting etc? Ofc this could bring other issues...

Physical bodily lifting should not happen, full stop. Even if you take out of the equation the damage it does to the carers bodies over time (which now I'm older is taking it's toll, it shouldn't have happened when I was even starting out in care, but it did because of lack of resources) it's dangerous for the person being lifted.

Equipment has been designed for this reason, but it's expensive, time consuming to use and frankly if you've ever experienced using one, frightening when you know what's happening never mind if you are confused or disorientated already and refusal to use it has to be respected does it not?
We don't need specifically male or female care workers or even particularly strong people - we need enough so that time can be taken, reassurance given, enough staff and equipment that people who need that equipment and staff to use the toilet or get showered aren't in an endless queue waiting for it to be available.

The problem as ever, is that the resources don't match the expectations, and it's easy to blame those who are actually doing the job and decide they're lacking the skills that mean the job is done properly, rather than look deeper and realise that no one can provide excellent levels of care with the bare minimum of resources.

A woman I worked with had her Mother in a care home who had dementia plus many other health issues and was close to 90. She had 3 bouts of pneumonia in a couple of years. She was treated every time. Why not let someone like that be given pain control but be allowed to die. She had no idea who she was or where she was.

I work as an ACP in the community and have done so for 27 years. I have had many similar conversations with my Consultant colleagues and the problem with not giving antibiotics is that the symptoms can be severe in terms of suffering. It is not just about pain relief. We are not trying to prolong their life but reduce their suffering. A lot of decisions come down to relatives though.

I hate to say this and will probably get called cold hearted but it amazes me how many relatives still insist on hospital admission and treatment for their elderly loved ones. I work in a team that tries to reduce admission to hospital we are consultant led and can give so many treatments and care at home nowadays. I went to see a patient a few days ago in a care home, advanced dementia, doubly incontinent, unable to express needs, nursed 24/7 in bed. I had a long conversation with their relatives and they were pushing for admission. I know if this person goes in they will likely die or come out worse than they went in. They admitted them overnight to hospital when we were off duty. It is tragic that they would not let us try and treat them at home and if they deteriorate we go onto palliative care. That poor person will now be lying in a hospital bed with limited care which they could've had in the comfort of their own homes, at that stage though it was not our decision.

In all of my years I have only ever seen 2 advanced directives which were put in place by patients and both were respected by medical staff.

Many many relatives cannot 'let go' even if it prolongs the life and suffering of their loved ones who have a very poor quality of life, because they love them but the vast majority of the time it is not in the best interest of that person.

There’s a podcast on BBC Sounds about a care home with a preschool in it, that’s an interesting concept.
https://www.bbc.co.uk/sounds/play/p0m6jqyq?partner=uk.co.bbc&origin=share-mobile

Introduction of a National Care Service, like the National Health Service. No more private care agencies or residential homes. Everything managed by a local trust. This strips away the profiteering side of it.

It would also allow for care to be seen as a career in the same way that health is. You could start as a carer and have career progression via on the job training opportunities that could then see you go into occupational therapy, adult social work, or DOLs and other legal work related careers. Defined salary scales etc so it's not just minimum wage with no pay for travel between calls. Make it appealing to people and they'll do it.

However, as a nation we also need to take some self responsibility. I work for Adult social services. A lot of our service users would not require so much input if they had led relatively healthier lives whilst they could.

That’s primarily from shutting homes and selling property off for housing.

I saw a thread several months ago from a care home owner talking about the eye watering costs to run. Some seem to make lots though.

I think in practice most are just massively under resourced, so someone has a urine infection and falls and is then placed in a wheelchair for safety losing mobility. Someone else is put in nappies as there is not always time to help them to the toilet. It is such a ridiculously, poorly paid sector.

Education over healthier choices could help, but how does that stop faster deterioration over things like lack of access to health and social care? There is mounting research over the link between covid and early onset dementia, along with other impacts on the brain. There are young children who have had a number of covid infections already - the ones with health conditions or behavioural changes following that can’t get help now. For older (not old) adults where repercussions leads to dementia, what are we meant to say? I’m sorry that you should have fought harder to stop schools/government telling people to attend with covid and your children brought home regular infections. Sort your own dementia out?

I do think an acceptance thst we aren’t meant to get really old will help. Especially for those with severe dementia, I will be filling out a living will to say I only want palliative care if develop dementia. I’ve had quite a few relatives thst have dornt 20 years at great expense slowly withering away in care homes.

Care homes should be publicly run like the NHS is - its expensive enough to care for elderly, especially those with dementia, without adding in a layer of profit

The adult social care system in Germany is much better funded and managed.

Everyone pays a social care element as part of their health insurance so there is much more money in the system to start. You pay this whether or not you will ever need social care.

There are far fewer small privately run care homes - most are large scale (though divided into smaller households according to need) and run by foundations on a not for profit basis.

Care staff are better trained. Many are recruited from abroad but they train for several years before being let loose on vulnerable elderly people.
Care staff are better paid, and retention rates are higher.

I think the UK should look seriously at insurance packages for adult social care. Care fees should be capped at say three years fees - so around £200,000. This would allow insurance companies or the state to design and sell packages which could be marketed to everyone.

I think Teresa May floated something along these lines but opposition parties dismissed it as a dementia tax. Political parties should work together on this and stop trying to score points at the expense of the vulnerable.

I would also bring in euthanasia for those who made a rational decision to end their own lives with dignity.

The hours carers work are back breaking. Shifts that are 14 hours long, finishing at 10pm and back on shift at 8am. Awful if you catch a bus as you might only get 5 hours sleep before you have to leave for your next shift. Alot of carers will be clocking 60 to 70 hours a week there are many that do more. There is no sick pay. There is a huge responsibility within the job and they give meds out like nurses do. Unlike nurses they get around £13-15 pounds an hour if they are lucky. Pay staff properly, give sick pay. Improve conditions so you can employ enough staff and stop burnout and high turnover.
Domicillary care is even worse and you can work 14 hours and only get paid for 10. The care industry is a disgrace. Staffed mainly by good people who are exhausted.

I did read that a few people in Germany were sending their relatives abroad to places like Thailand or the Philippines where care was much cheaper!

Erlingen99

I would also bring in euthanasia for those who made a rational decision to end their own lives with dignity.

I don’t want to be around if I have dementia. My friend’s mother, who had dementia, ended up in a terrible state. She was in torment. My friend said that she would have been prosecuted if she had let her horse live like that.

A big part of it is shift patterns, and I can't think of a way around it. Our clients need continuity of care, which is why we work all day shifts. But our shift requirements exclude people with their own family responsibilities, and they're some of the best at caring. We end up depending on women too young to have children, or men of various ages who are able to work all hours because they don't fulfill their own family responsibilities.

I would much rather have a part-time mother-of-two on shift than some of the full time staff I have as colleagues, but I don't get a choice in that.

It starts with the attitude of the people receiving the care, who at the moment appear to see it as something that you should avoid paying for as much as possible while simultaneously hoarding cash to give to your kids.

Care workers generally aren't valued anywhere near as much as they should be.

P.S. UTIs in elderly people worsen dementia. They speed up cognitive decline, and if not treated quickly, the cognitive loss from the UTI can be permanent.

I do entirely understand reservations about over-aggressive medical treatment of elderly people, but treating UTIs is not such a case.

Insurance package sounds a good idea, but if you don’t need care in a care home then what happens? Do you get a nice lump sum to pay for holidays, luxuries, a bungalow , live in carer?

How do you check the care they’re being given? They could be assaulted, robbed etc. How would you know? Bundling them off abroad to the cheapest option comes with all sorts of risks!

Back in the late 1960s - early1970s an elderly friend of our family - no close family of her own, and a spinster - was in a sort of foster family arrangement, funded by the local authority. From what I remember, physically she wasn't too bad but declining a bit mentally.
She was living in a family environment, with the stimulation that provided, and was very happy.
I don't know what happened to her eventually.

That sounds easy, but it’s not.They may be in the early stages of dementia but deemed to be rational when they made their decision “ helped” by relatives! They may be rational, but pressured to sign.

Why isn’t dementia automatically treated as continuing care on the NHS,in cases where the person is obviously needing complete care, washing, feeding etc, instead of relatives having to go through hoops to get it, often refused and having to appeal ?

I couldn't agree more. The difference between the way cancer care, and even MND care, and dementia care are treated is cruel and unjust.

As a starter, need to start paying staff at least 10% above minimum wage. It is hard work both physically and emotionally and a fair days wife for a fair days work.