What might a change in government mean for what action is taken on dementia in the next government? #DementiaActionWeek

When Boris Johnson became UK Prime Minister, he promised to “fix social care”. Of course, he didn’t. It was another lot of hot air, like his pledge to build loads of hospitals. The funding of social issue remains a known issue, and political parties have been loath to face tackling it. Nick Timothy, the former joint chief of staff to the then Prime Minister Theresa May, was the driving force behind the controversial “dementia tax” policy that was included in the Conservative party’s 2017 election manifesto. This policy may have cost them that election. It is mooted that this policy would have required thousands of pensioners who own their homes to pay for care they receive in their own homes, with their homes having to be sold after their death to cover the costs.

Nick Timothy was known to want to “tackle generational unfairness” by shifting resources from older people to younger ones who are “struggling with low pay, poorer pensions and sky-high house prices”. The relationship between the state and the rest of the country is a key area of interest for an incoming UK government, likely to be Labour-led under Sir Keir Starmer.  Lord David Cameron is known to be a card-carrying ‘small state’ Tory, and so therefore it is not any ideological surprise that he should want to promote drugs to slow down or stop dementia in its tracks, or to cut drastically funding to social care. The current evidence suggests perhaps that Nick Timothy’s vision for the “active state” involves reducing support for older people with dementia and other conditions, in favour of directing more resources towards younger generations.

The “dementia tax” policy was widely criticised as unfair, as it would force people with dementia to pay for their care at home while conditions like cancer received free NHS treatment. The policy appears to have backfired politically, contributing to a drop in the Conservatives’ poll lead. It may be that some other factors would impact on Starmer’s political direction, such as increased spending on defense, diverting money from infrastructure. Despite the failure of the “dementia tax”, Timothy’s influence and desire to reshape social care away from supporting older people suggests the direction of dementia care under his vision for the “active state” would likely involve reduced government support and a greater emphasis on individuals and families bearing the costs of care. There might be some convergence between the Tory and Labour approaches in dementia policy between 2025 and 2030, and certainly Timothy’s ideas about the “active state” point towards a future where the government provides less support for dementia care, shifting more of the burden onto older people and their families, in an effort to redirect resources towards younger generations. 

Starmer had, a long time ago admittedly, criticised the current government’s social care reforms, calling them a “working-class dementia tax“. He has accused the government of protecting the estates of the wealthiest while making working people pay more through higher taxes and having to sell their homes to cover care costs. Virtually every interview Wes Streeting MP, the shadow for health and social are, does on social care, he signposts imminent publication of Labour’s policy, without ever committing to any details. Starmer has previously outlined Labour’s mission to create an NHS “fit for the future“, which includes a focus on integrating health and social care. He has pledged to recruit and retain more carers with a “fair pay agreement” and to revolutionise mental health treatment, including providing specialist access in every school.

The indications are that under a Labour government led by Starmer, there would likely be a greater emphasis on integrated, patient-centered care for those with long-term conditions like dementia. This could involve more joined-up working between the NHS, social care, and other services to better support patients. I have previously written at great length about what this would mean clinically. It is, however, unclear whether the UK Labour Party would specifically emulate Tony Blair’s approach of forging closer ties with the United States. The focus appears to be more on domestic reforms to improve the NHS and social care system.

Starmer’s approach to dementia policy under integrated care systems would likely involve greater investment in social care, mental health support, and coordination between different services – in contrast to the government’s reforms which Starmer has criticised as unfairly burdening working people. It is estimated that there are perhaps 141 drugs being tested in clinical trials for the treatment of Alzheimer’s disease. New monoclonal antibody treatments for Alzheimer’s disease, such as lecanemab and donanemab, are likely to be approved by NICE and the Department of Health in the UK, but their overall impact on dementia care may be limited:

Lecanemab has already received full approval from the FDA in the US and Eisai has applied for approval in the UK. NICE is scheduled to appraise lecanemab in 2024. If approved, it would be the first new Alzheimer’s drug in the UK for nearly twenty years. Donanemab has also shown promising results in clinical trials and was submitted to the FDA for approval in July 2023. It is also expected to be appraised by NICE in 2024. These monoclonal antibody treatments are designed to target and clear amyloid plaques in the brain, which are a hallmark of Alzheimer’s disease. Clinical trials have shown they can slow the rate of cognitive decline in people with early-stage Alzheimer’s by around 27%. Whatever the possible change of government, it is clear that there is much cross-party interest in this policy in the UK legislature. The overall impact of these new treatments may be limited. They are only approved/targeted for use in early-stage Alzheimer’s, not more advanced dementia.

These novel treatments are still expensive, with lecanemab estimated to cost around $56,000 per patient per year. Affordability for the NHS may be a challenge. The treatments currently require regular intravenous infusions, which could put strain on healthcare resources and access. Their long-term effects beyond 18 months are still relatively unknown as yet, and they do not cure or reverse Alzheimer’s disease, only slow its progression with some dubious somewhat hyperbolic media messaging (arguably). While these new monoclonal antibody treatments represent an important breakthrough and are likely to be approved in the UK, their real-world impact on dementia care may be modest due to the limitations around patient eligibility, cost, and healthcare delivery challenges. More research is still needed to fully understand their long-term benefits. It would be utterly irresponsible for the UK dementia charities to overinflate their reach. Meanwhile, the NHS and social care are famously struggling to negotiate their demands about workforce wellbeing, recruitment, retention and training, and failure to include these factors in analyses surrounding integrated care systems is a big mistake (see latest King’s Fund output, for example.)

A change of government in the UK in 2024 or 2025, possibly, is unlikely to significantly affect how dementia charities adopt new drugs for Alzheimer’s disease in 2024 or 2025. The drug approval process is largely independent of the government and is handled by regulatory bodies like the Medicines and Healthcare products Regulatory Agency (MHRA). The two promising Alzheimer’s drugs, lecanemab and donanemab, are expected to receive decisions from drug regulators in the UK later in 2024. If approved, these drugs could become available to patients through the National Health Service (NHS). Dementia charities like Alzheimer’s Society and Alzheimer’s Research UK will likely support the adoption of these new treatments, regardless of the government in power. The adoption of new Alzheimer’s drugs in 2024-2025 will depend more on the outcomes of clinical trials and regulatory decisions than on political factors.

What do you think?

What do you expect?

@dr_shibley

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.

Dementia is a top priority, and needs a response to match

Dementia care has three obvious priorities:

Timely diagnosis

Social care reform

Accessing everything fairly

Every bit of this has to be appropriate for the person anticipating the diagnosis. The person, and invariably those closest, has to be prepared for the diagnosis, and needs to be supported throughout the ‘dementia journey’. Dementia is much feared amongst the adult population. Medical treatments thus far have been underwhelming. Social care has become progressively worse, especially in the last decade.

The person anticipating the diagnosis has a past, present and future. The person needs to be in a place and space of personal contentment, and that person’s identity matters. The sociological construct of ‘personhood’ has been applied to person-centred care. It would be wrong however to over-operationalise a person centred approach into managerial checklists and targets. That defeats the ethos of personhood as originally envisaged by English philosophers at least.

The dementia field moved away from the term ‘early diagnosis’. This was because at one extreme it was a bit extremist. For example, dementias which had a relatively simple genetic basis could in theory be diagnosed in the womb. The person-centred ‘timely diagnosis’ is the first step in a long process which the person with dementia will face.  Having lost my mum eventually with dementia after six years, I’ve been through every bit of that process. The average length of time of survival for dementia is about seven years. That’s why it’s not wrong to consider dementia in the palliative or end-of-life domains, and we know that for all the talk of a ‘good death’, both the NHS and social care and under-workforced and over-stretched.

Dealing with the workforce shortage is a key priority for the new government, whoever that is. Social care reform is likely to take place within the schema of integrated health and care systems. That’s why it is a good idea for every operational leader in such a local system has a clear strategy for implementing a dementia diagnosis and care strategy. A lot of things can pop up, such as a world viral pandemic or Brexit for example. That is the direction of travel, however. More irritating are the self imposed market failures of a privatised social care system, where people sometimes can’t afford care. All care is essential, and none of it is basic. Providers going out of business at the drop of the hat are no way to run a healthcare system where people affected by dementia are so dependent.

The world of dementia is overwhelming, especially for the large army of unpaid family carers. At one end, there seems to be the world of Pharma whose success in profitability is determined by their success in getting effective drugs. Some of drugs have a minimal effect in symptom control early and late on, for thinking and behaviour respectively. It’s a given that all drugs should be safe. We cannot allow any of them actually to cause accelerated decline, whatever pressures. Bear in mind that a ‘cure for dementia’ was originally called for by the G7 dementia in 2014, by 2025. Beth Britton was there, who’d seen dementia up close and personal with her father. She has for a long time advocated for the rights of people with dementia. She has been a fellow traveller on this traumatic journey, punctuated by ‘new normals’, new expectations, new promised ‘breaktthroughs’, and so on; but we have become experts by experience in learning from failure.

When I first received mum’s diagnosis of dementia, a lot suddenly made sense. The organisation of her personal affairs had become shambolic, and her self care had deteriorated. This was well within retaining legal mental capacity, which she retained for a large proportion of her dementia journey. Just before she received her diagnosis, which was signposted by a hospital admission for delirium (like so many), I had had thoughts of organising some befriending with the help of a local charity. This befriending didn’t eventually work, as mum didn’t feel comfortable with strangers looking as if they were invading her personal space. Also, the Bengali befriender didn’t look interested in mum at all; and spoke an entirely different dialect of Bangladeshi.

Jeremy Hunt is about to deliver an autumn statement, where ‘work shy’ individuals might get punished, or there might be inheritance tax cuts for the very rich. This will be small potato for those who have lived through the decimation of social care in recent years through a panoplie of health and social care secretaries of state. The NHS workforce is largely currently demoralised and over-stretched, so things could be better.

None of the care, some of which might become quite intimate because of the care recipient being doubly incontinent, unable to prepare meals, or eat or drink safely, and so on, can take place without a diagnosis. There is a ‘gold standard’ of making this diagnosis which is time consuming, costly and bulky to implement nationally. In the same way a person who has a clot in his lung or someone who has a blockage in his heart first have a blood test and then detailed sophisticated neuroimaging, we really do need to begin the journey to do research into picking up cases of dementia through a simple blood test akin to a troponin blood test. Dementia in the older person tends to have complex multiple causes, present in a ‘mixed dementia’ sort of way, but that is not a reason why we should avoid research altogether. This is an urgent practical issue for the NHS as it fits into the wider strategic goals of entities such as NHS England. Every person who actually has dementia who has never received a formal diagnosis is a tragedy. Arguably anyone who has received a diagnosis of dementia when he or she does not actually have dementia is a tragedy of a different flavour. Specialists in the neuropsychopharmacological field are capable of working together for the common good, but there is corporate capture and the issue of the power of vested interests. Like politicians, they need not to overclaim and underdeliver, but medical research is so much needed. Dementia research has historically lagged behind other fields such as cancer. This, coupled with institutional ageism and othering of people with dementia as an ‘abject other’, is a remarkable ‘red flag’.

The reform for social care is long overdue, and will undoubtedly not surface in this week’s autumn statement. There needs to be a social workforce plan to begin with. I think it’s really important that there is ‘buy in’, a culture of wanting change from the general public. This to me is obvious as there are literally friends and family of persons with dementia who are put off the cost of care. This has been exacerbated as a big problem in the ‘cost of living’ crisis. I remember when I’d be counting the pennies when thinking about the cost of carers privately, just prior to the official dementia crisis. What happened was I was totally overwhelmed by the pace and extent of change to ‘new normals’ every day. At first, I was very upset at minor thinking changes in mum, but when huge changes eventually happened, like mum not recognising me, I was shocked but not especially surprised.

For me, then, dementia care has three obvious priorities:

Timely diagnosis

Social care reform

Accessing everything fairly

We’ve been going round and round in circles. None of this is new. This has been the agenda for at least a decade. Meanwhile, there are undeniable facts. Unpaid family carers cannot cope on their own. They should not be expected to cope on their own. And yet too many are having to have to. 

Dementia is a life-changing general medical and psychiatric diagnosis like no other. It is treated with equal reverence and caution from our colleagues in public health and population sciences. It is the biggest killer in England and Wales, according to the Office for National Statistics, and, in my opinion and experience with my own mum, it desperately needs a response to match.

Shibley Rahman

@dr_shibley London, 19 November 2023