What is the face of dementia care in the future?

One day, there will be a reliable blood test to suggest more investigations for a formal diagnosis of dementia might be advisable. And also there might be a drug which you can start early in dementia which is safe to use and has a beneficial impact on the disease. These are not unreasonable goals one might want to emerge from research, funding for which has historically lagged behind to an unreasonable extent.

Another landmark comes to pass today – the Autumn statement from the current government. There will be, most probably, very little formally in Jeremy Hunt’s tub thumping speech in the House of Commons early this afternoon. The stark reality for unpaid family carers in dementia care in the real world could not be more staggering. My mum was given a diagnosis of dementia in 2016. She died in 2022. That journey with worsening dementia and frailty is one I will never forget for the rest of my life. It was incredibly eventful being her son who loved her every bit of the way. It was also very busy.

I am going to set out here some known problems and issues – what the Government has promised about funding, and why it’s important to hold the Government whoever it is to their promises.

I therefore simply for that reason take a keen interest on where dementia care is overall heading. I cannot emphasise enough how getting a formal diagnosis for dementia is so crucial for planning for the future. Whilst dementia is the most feared diagnosis in adulthood, it’s crucial to plan ahead. It is very widely acknowledged that a person with dementia will need more care and support as their symptoms get more and more remarkable, and difficult to manage, over time. This progression may mean that a move into a care home can better meet their needs. Alternatively, the care at home may need to intensify. We need a system where unpaid family carers are not languishing at home simply because they cannot afford to provide for private care. Unpaid family carers are, without correct support, finding themselves out of their depth, at breaking point and at crisis point themselves. We cannot go on like this.

In my personal view, it is basically unworkable for somebody to get through without receiving a formal diagnosis of dementia for their problems. Unfortunately many people with dementia will reach a point where they can no longer make some decisions for themselves. This is known as lacking ‘mental capacity’ to make those decisions. When this happens, someone else – often a carer or family member – will need to decide on behalf of the person with dementia. Long before that happens, a person with dementia will need help in paying bills and making basic financial transactions. A Lasting power of attorney (LPA) is the legal tool that lets you choose someone (or several people) you trust to make decisions for you. This person is referred to as your ‘attorney’, and you can choose what decisions they can make for you. I know people who put off doing the paperwork for this. But it is time well spent, and worth doing before it is far too late.

Nationally, things are moving actually quite fast. It may not look it, as the country still recovers from COVID and looks into what went wrong in English policy, of a start. However, there are important changes afoot. Integrated care systems (ICSs) are the centrepiece of the biggest legislative reform of the NHS for years. .NHS England has established 42 integrated care systems – partnerships between the NHS, local authorities, voluntary organisations and others – to improve the lives of people in their area, including those affected by dementia.

A major aim of current policy is to help people with dementia to stay well, independent and at home for longer. ICSs face a huge task. Staffing shortages in the NHS are chronic, health and care services are under extreme strain due to a crisis in recruitment and retention, and health inequalities are wide and growing.  The growing demand for home care means that providers are finding the complexity of need is increasing, as they are looking after people at home for much longer, with much more complicated conditions. 

Nonetheless, many people want to live independently at home. High quality home care can extend healthy lifespan and save money. But care homes can be equally good, but the rights for residents are a key concern especially in the light of what happened in the COVID pandemic. Advantages of care homes include 24-hour support from care staff, knowing that the person with dementia is in a safe place and social activities with other residents. I have previously discussed in detail how care works in dementia work in the care pathway. There is indeed a relative paucity of timely data about the social care market generally, and a lack of knowledge about self-funders in particular (those who pay their own fees make up around 50 per cent of care home users). 

A few years ago, it was estimated that businesses in England lost £3.2bn last year because people had to leave their job or change their working patterns to care for someone with dementia. The implications of the unpaid, family caring workforce are huge for the wider macroeconomy.  These are historic statistics now (klaxon), but, of the 355,000 people of working age caring for a loved one with dementia, more than 147,000 have had to reduce their work hours or have had difficulty balancing work and caring. It was estimated that more than 112,000 people had to give up their job in the past year, with many retiring early because of their caring commitments. But this eye-watering fgure will have gone up.

There is a relationship between how much money you put into the system, and what comes out of the system. That said, there are wider issues such as culture which are so entrenched and no money appears to shift the dial except from strong leadership. There is much evidence linking the treatment of staff to the safety and quality of care the elderly receive. Above all, good care relies on competent, trained, supervised staff having the time and continuity to build relationships with vulnerable adults.

But there are major known issues in the way dementia care is organised. For example, take zero-hour contracts. Zero-hour contracts are a type of casual worker contract. There is no legal definition of a zero-hour contract and how they are used differs from business to business. They are broadly understood to describe an arrangement where there is no guarantee of work or pay. 

It is said in their defence that zero-hour contracts can play a key role in enabling flexible models of working for both employers and workers. The use of zero-hour contracts can disrupt the continuity of care for individuals, who may see many different care workers throughout the course of their week, or even their day. This has been found to be especially problematic for people with dementia, for whom a continuous care relationship is very important. Clinically having a familiar face doing the caring, such as intimate personal care in changing an incontinence pad, is vital. Otherwise the person with dementia can become very scared, and basically quite traumatised. From an employer’s perspective they can help to manage fluctuating demand, such as where work is seasonal. For individuals, the arrangement can allow work to fit around other commitments whether that be for parents, students or carers. 

Many critics of attempts to regulate or reduce zero-hours contracts have said historically that they play a vital role in the UK’s economy. Labour’s current position it seems is that their proposals for reform will not prevent businesses operating flexible workforces. Instead, the aim is to shift the responsibility from workers to employers. According to Lewis Silkin, a growing number of businesses are moving away from zero-hours contracts to minimum hour contracts. For those employers that still rely on zero-hours contracts, it is likely that banning them will impact certain sectors such as in agriculture, healthcare, retail and hospitality more than others.

But the current Government has already made plans which will impact on dementia care in the next parliament. In September 2021, the Government set out plans to reform adult social care in England (PDF). It said that £5.4 billion would be used to fund the reforms between 2022/23 and 2024/25: these include £3.6 billion would be used to reform how people pay for social care (charging reforms). This included £1.4 billion to help local authorities move towards paying a “fair cost of care” to providers., and £1.7 billion would be used to support wider system reform.

Funding reforms in social care has been a mess for at least a decade. Many of us still feel the pain from the lack of implementation of the proposals off Andrew Dilnot. The Government originally proposed that the adult social care charging reforms would be implemented from October 2023. However, at the Autumn Statement 2022, delivered on 17 November 2022, the Chancellor announced that the reforms would be delayed for two years, with the funding allocated “to allow local authorities to provide more care packages.” Under the now-delayed reforms, the Government plans to introduce a new £86,000 cap on the amount anyone in England will have to spend on their personal care over their lifetime. The cap will apply irrespective of a person’s age or income. The legislative framework for a cap is already provided by the Care Act 2014, but the relevant provisions are not currently in force. Only money spent on meeting a person’s personal care needs will count towards the cap. Spending on daily living costs (commonly referred to as “hotel costs” in a care home) is not included. 

Local authorities can use their position as a large purchaser of social care to obtain lower fee rates from care providers. Providers in response often attempt to cross-subsidise by charging more to people who fund their own care. This possibly might lead to market failure and fragility in the system overall. Provisions in the Care Act 2014 (section 18(3)) will be brought fully into force enabling self-funders to ask their local authority to arrange their care in a care home for them so that they can benefit from lower rates.

According to Simon Bottery at the King’s Fund, following publication of its ‘next steps’ document on 4 April 2023, many of the remaining measures from the White Paper have been cut back or even abandoned. Most notably, a key promise of at least £500 million to be spent on workforce training, qualifications and wellbeing has been cut to £250 million, and a promised £300 million to transform housing options has been replaced by £102 million for smaller in-home adaptations.  According to the Social Care Institute for Excellence, the Department for Health and Social Care has launched a £42.6 million “Accelerating Reform Fund” to boost the quality and accessibility of adult social care by supporting innovation and scaling, and kickstarting a change in services to support unpaid carers. This might accelerate progress towards the “social care vision” where people have choice, control and support to live independent lives, and where care and support is provided in a fair, accessible way. That social care vision has been longstanding at least since the early 1990s in England, and has gone some recent refreshment.

So, in summary, there is, staggeringly, a known ‘direction of travel’ for funding of dementia care, and this has the two-pronged approach of fairer costs for the end-recipient and fairer working conditions for people involved in dementia care. To be frank, I don’t think that things cannot get any worse. But this low baseline shouldn’t be the standard by which we seek future progress? I have in any case tried to establish here that some known problems and issues – what the Government has promised about funding, and why it’s important to hold the Government whoever it is to their promises.

I am on ‘X’ here: @dr_shibley.

Does ‘person-centred care’ matter?

Care would be pointless if there was no relationship between caring actions and a beneficial outcome. Also, the care experience should be devoid of opportunities to do actual harm; no person wants to be worse off from entering a hospital or care home.

There is no single definition of person-centred care, but, to some extent, regulation 9 of the CQC provides some meat on the bones. The woolliness surrounding the term ‘person-centred care’ is not, in my view, restricted to the term ‘person-centred care’. I think woolliness, and to some extent blandness, engulfs many terms in common usage, such as ’empowerment’, ‘engagement’, ‘involving’, and, dare I moot it, ‘wellbeing’.

Good care is not the absence of bad care necessarily, in the same way that wellbeing is not the absence of ill being, or assets are not simply the absence of deficits. If you think ‘care’ is hard to define, have a go at thinking about what a ‘person’ is, or whether care is actually ‘centred’ on the person always?

We popularise ‘what matters to you’ rather than ‘what is matter with you’ but it would be misleading to suggest that there is not an absence of things ‘done to’ patients. Take for example a person who enters a hypoglycaemic coma due to low blood sugar due to an insulin producing tumour; in that coma, the person’s spiritual beliefs might be less important than giving that patient glucose.

There are widespread examples. Take for example a person who starts behaving extremely abnormally due to an epileptic seizure in her temporal lobe – such that she sleepwalks and then with a rifle shoots somebody. That person might even be held not to be responsible for those actions at that particular time due to a legal construct called insanity.

It might be that we don’t need to know someone’s life story if his blood glucose can only be restrained with a sulphonylurea or gliptin drug. But it might matter if you’re prescribing the same drug that his father accidentally died of an overdose of 30 years ago.

It is a bit of a cop-out to say that something is ‘centred’ on someone. It’s rather like saying your initiative is ‘friendly’ or ‘has someone in mind’. It might be more reassuring if a particular mode of practice were ‘led’ by an individual’s needs. Imagine also if a patient has no insight into his own condition, as may happen in severe alcoholism or dementia – should care be focused on his perceptions of what is wrong (i.e. nothing)?

For a person with dementia or delirium, there’s a tendency to reconstruct what that person might be like from what we know of him. This can lead to untoward consequences, like decorating the ward in memorabilia from an era of his life which was extremely psychologically traumatic, like the Second World War.

But there’s the rub – the tendency to define people by their diseases. This is dangerous because the diagnoses could be wrong. Think of the calamity of subjecting a dementia-friendly community to someone misdiagnosed with dementia.

We could instead identify needs of a person; this would be the end of the disease era, then.

Not understanding someone’s health beliefs about either their condition or their treatments, medical or otherwise, can have catastrophic effects on whether that someone actually wants that set of treatments.

It can lead to great acts of pretence, to say that someone with severe frailty might have his condition reversed by good nutritional supplements and exercise, and all sorts of twisting of the evidence to peddle this story.

This means that there is for several conditions a reluctance to admit a person is changing, a phenomenon well known to those closest such as unpaid family carers.

Knowing about how the current condition fits into the person’s life story, beliefs, concerns and worries must make sense too. Conditions can make a profound impact on how people interact with each other. Not inquiring or helping about this is not helpful.

I find myself feeling that ‘person-centred care’ is a mere slogan, if the reality is that a patient is rushed into hospital in an ambulance with the windows blacked out, taken to an unfamiliar ward, taken off to tests and investigations without explanation, is subject to ward rounds at variable times with variable personnel, can end up in various locations during any one hospital admission, is not addressed by his name, is never asked who the person sitting by the bed 24/7 is, is stripped down to pyjamas and kept in bed for longer than necessary, does not have medication changes communicated by the ward staff, ward staff seem to run physically in the opposite direction when approached, or there is no consideration of the person’s home circumstances or wishes.

But persons have rights in law, as well rights imbued in a rights consciousness. In a rules-based world, it is important to uphold these rights, which not only include consumer rights, but include human rights which are inalienable and universal. Rights do not exist in a vacuum, and we need to understand better how a person’s rights are complementary to those around him (such as a carer’s rights in safeguarding.)

This is, however, surely a case of “learn not blame”? It might be unfair to blame clinicians of whatever rank for this if they are being pressurised by external resources, and tight resources, to compress care in the context of rota gaps and a need to fulfil tasks which are deemed necessary?

Clearly it does matter if delivering person-centred care is compromised by lack of resources or poor leadership.

Riddle me this. How is it possible to conduct effective and safe person-centred care if health professionals are themselves ill, burnout, stressed or bullied due to working beyond their natural comfort zone?

There is, of course, a risk of throwing the baby out with the bath water, and just forgetting it – and reverting to the mentality that a person is not a person, but that ‘bed 8 needs a venflon’. There might be a case for suspending the notion of a person, and riding roughshod over dignity, respect or compassion (but this breaches the regulatory code of professionals).

It might be that the whole thing is over-complicated when instead we want ‘dementia friendly communities’ or ‘frailty units’ – keeping it simple.

Or it could be that person-centred care actually matters after all.

@dr_shibley