Dementia

Question for Short Debate

Asked by

To ask His Majesty’s Government how they plan to create a parity of esteem between health and social care to address dementia.

My Lords, I declare my interests as co-chair of the All-Party Parliamentary Group on Dementia and as an ambassador of the Alzheimer’s Society. I bring this debate to the House today because dementia affects 944,000 people in the UK, or one in 11 of those over the age 65, and the number is predicted to reach 1.6 million people by 2040. It is the leading cause of death in this country.

Dementia is an umbrella term for a number of conditions, the most prevalent of which is Alzheimer’s. Symptoms include memory loss, behavioural change, motor function loss and visual processing issues, among many others. It is degenerative and terminal and, as of now, there is no cure. All stages of the disease have a need for both social care and healthcare, from diagnosis to death. Ironically, diagnosis is still a long wait in many parts of the country. Unfortunately, we do not know how long people are waiting because the data is not collected. I will say more later about end-of-life care.

It is essential that these two services—health and social care—work in tandem and are resourced to enable them to do so. This will avoid the historic tension of buck-passing of responsibility, excessive delays in support and letting down both the patient and their carers. I know that many Members of this House have first-hand experience of caring for people with dementia—I do myself. To give a real feel for what this is like, I commend the current ad on our screens from the Alzheimer’s Society called “The Ultimate Vow”—noble Lords may have seen it—which portrays Laura and Adam, a married couple on their dementia journey. It is very moving and also very accurate.

Today, I would like the Minister to address healthcare and social support as of equal value and inseparable. That requires not just parity of esteem between them but a reorientation of systems away from siloed professions and a focus on care in hospital. Shockingly, NICE reports that one-quarter of hospital beds are occupied by people with dementia, often due to emergency admissions for avoidable reasons such as falls and urinary tract infections. I therefore say to the Minister that there is no more compelling reason for hospital at home, including residential care homes, than this group of people, and I add that that should also apply to hospice at home. Decades of failure to plan and resource services adequately to enable personalised care for a condition as complex and as common as dementia is long overdue. Starting from diagnosis, all patients should have a care plan, which clearly will need reviewing as things change, for change they will, becoming more challenging over time. In six years of caring for my husband with Alzheimer’s, nobody ever suggested a care plan. The one that I had was one that I devised in my brain. Care plans should apply to everyone, including those who are self-funding.

Less than 65% of people with dementia have a formal diagnosis—a figure we simply would not tolerate for other conditions. We are not talking just about people with memory lapses; at all stages of the pathway trained staff are essential. I welcome the Government’s recent announcements of funding for social care training. Only 45% of the social care workforce have a record of dementia training, but please do not forget healthcare: district nurses receive good training, but training for hospital ward staff, even those on some geriatric wards, requires improvement, particularly on caring for people at the end of life. Some 30% of people with dementia do not die in their normal place of residence. Aside from the disorientating activity of an open ward or an A&E department, we should think twice about admitting anyone with advanced dementia into hospital unless there is a real medical imperative. Neither nurses nor healthcare workers are properly trained to provide palliative care for dementia patients. They certainly cannot provide the one-to-one care necessary. I know that my noble friend will have noted my earlier request for hospice at home for dementia patients.

My Lords, I give my thanks to the noble Baroness, Lady Browning, who, against convention, I should call my noble friend, because we have worked together on these issues for many years. I thank her not only for securing this debate but for hitting the nail on the head when it comes to the situation between health and social care. That lack of parity of esteem is at the root of all the problems she outlined.

Although a health condition and the biggest cause of death in the UK, dementia receives most attention through not the NHS but social care, which has always been the poor relation—the tail-end Charlie—vis-à-vis the NHS. That did not matter in 1948 when it was set up, because we all died much earlier, but as we grow older, with greater incidence of dementia and other comorbidities, it matters hugely. It matters for diagnosis—the noble Baroness mentioned the long waits—or the absence of any diagnosis at all. It matters for services, both the access to services suitable for dementia patients and their carers, and the quality of the services. We heard from the noble Baroness, Lady Browning, about the lack of training of many people who provide those services. It also matters for access to medication, because we hear about the postcode lottery of what dementia medication is available.

Of course, its effect is nowhere more significant than it is on the biggest providers of care for those with dementia: not the NHS or social care but their own families—the spouses, sons, daughters and friends—who are often locked into an intolerable situation by the care they provide, however willing they are to undertake it. They suffer financially—we heard about the enormous costs of care—and they suffer physically, as their physical and mental health is at risk. Three-quarters of all carers report damage to their health as a direct result of their caring. They lose financial security and end up in poor health and often isolated, since their social circle shrinks dramatically. If there were more parity, we might be able to focus more on preventive services for dementia sufferers and their carers. There is no cure, but the progress of the disease can be slowed, or its onset delayed, by such things as exercise, group activities and interest groups—just the sort of things that are cut in times of austerity.

I thank the noble Baroness, Lady Browning, for drawing attention to this timely and important issue. I am a neuroscientist working on brain mechanisms that underlie dementia and, accordingly, I declare an interest as the founder and CEO of a biotech company, Neuro-Bio Ltd, which is developing a novel approach to the diagnosis and treatment of Alzheimer’s disease. From first-hand experience, I can speak to the importance of strengthening the dementia research landscape. It is only by increasing resources for research that we will ever be able to realise if not a cure then, very plausibly and at last, a truly effective treatment. I thank the Alzheimer’s Society for its assistance in preparing these remarks on the situation in the UK, where, as we heard from the noble Baroness, Lady Browning, some 900,000 people are already living with dementia, a figure expected to rise to 1.6 million by 2040. As we also heard, one in three of those born today will develop the condition in their lifetime.

Yet combating this devastating disease is still not seen as the political priority it needs to be, and it has been historically underfunded. For example, just 31p is spent on dementia research for every pound invested in cancer research. That said, we should welcome the launch last year of the Government’s £95 million commitment to the Dame Barbara Windsor dementia mission, but we now need to see a delivery timeline for this funding, and we urgently request further detail about how the Government plan to invest the money.

But it is not just about the money. The APPG on Dementia, of which I am a proud member, released in 2021 a report entitled Fuelling the Moonshot, which found that people affected by dementia feel a sense of empowerment from being involved in research, but also that patients are often unaware of the opportunities to take part. This has to change—action must be taken to improve participation in, and access to, clinical trials. Recent investment in research is welcome, but it will be wasted without increased participation in these studies.

My Lords, I am grateful to my noble friend for tabling this debate. As well as having family experience, I also served on the Joint Committee on the Draft Mental Health Bill.

Lack of parity has created complex administrative processes for practitioners, patients and families. It is clear to me, from having two elderly relatives needing support, that you risk not getting the best outcome if you do not understand the system and are not able to advocate for them. With the first relative, we had the baptism of fire of continuing healthcare assessments. Putting aside the obvious distress to the patient and relatives caused by these meetings, there is also the time off work and lost income. The typical cast at these meetings would be the nurse, manager and staff of the nursing home, the discharge team from the hospital, social workers, patient and relatives. Meetings last one to two hours, plus travel time for the professionals, of course, as they have to take place in the nursing home. They may also need to be repeated or paused as the patient may be in and out of lucidity or competence.

The amount of resource gobbled up by these meetings was remarkable, and we had three attempts at it. Often the agenda seemed not to be about nursing care requirements, just whose pot of money it would be coming from—it is all taxpayers’ money, of course. Can my noble friend the Minister outline what assessment has been made by the Government of how much the process of continuing healthcare assessments is costing the NHS? If there was the parity outlined by my noble friend Lady Browning, this resource could of course be saved.

By the second relative, we were no longer newbies but, in that case, we bumped into the Mental Health Act. Some forms of dementia include mental health symptoms, such as delusions or hallucinations. My relative, who had such symptoms but had not yet been diagnosed with dementia, consented to going into a secure mental health hospital. I was quite affronted when a friend who commissions local authority services said to me, “Shame they consented and weren’t detained under the Mental Health Act”. Later, when I was on the draft Bill committee, I knew what he meant: Section 117, on aftercare. Although not automatic, it includes accommodation and can include all your care, hence the Times newspaper headline back in 2014: “The ‘secret’ law that means dementia care can be free”. It is not means-tested and you do not have any more continuing healthcare assessment meetings.

My Lords, I thank the noble Baroness, Lady Browning, for initiating this debate. I look forward to the day when this debate is held in the main Chamber.

Losing a loved one while they are still alive is a particularly gruelling experience and any assumptions that one makes about diagnosis and care turn out to be wrong. For example, I had assumed that hospice care took place in hospices. I am not criticising the hospice movement, far from it; its development of care at home, particularly in London, is quite remarkable, and I pay tribute to St Christopher’s Hospice for its invaluable support to me. I had also assumed that there was a system; I was wrong again.

In the short time available, I will concentrate on diagnosis and a social care workforce strategy. As has been said, more than 250,000 people live with undiagnosed dementia in England alone. We have one of the lowest per capita ratios of MRI, CT and PET scanners in the OECD, behind Russia, Slovakia and Chile. Recent effective disease-modifying treatments are not yet approved or commissioned in our country, but, even if they are approved, they require early diagnosis of Alzheimer’s disease and, at present, only 2.2% of people receive the tests in the diagnosis process. Will the Minister tell us what steps the Government are taking to invest in diagnostic infrastructure for dementia? The Alzheimer’s Society has said that improvements in diagnosis should be part of a major condition strategy between the NHS and the Government to put in place a funded plan to improve rates beyond the national ambition of 66.7%, if possible. What plans do the Government have for a major conditions strategy?

My second point is about a social care workforce strategy. The care workforce pathway is a welcome step to improve career development and increase access to training, but it falls far short of a comprehensive long-term social care workforce strategy providing a trained workforce. There are 152,000 vacancies in the adult social care workforce, with 390,000 leaving their care jobs annually. Only 45% of care staff are recorded as having any level of training in dementia, and training is not mandatory. The Alzheimer’s Society has called for a minimum mandatory level of training in dementia for all care staff to tier 2 of the dementia training standards. Can the Minister say when a long-term social care workforce strategy might be available?

My Lords, I share the views of the noble Baroness, Lady Browning, on parity of esteem, but my contribution will concentrate on the problems caused by a failing NHS and a failing adult social care system. It is very difficult to achieve parity of esteem between the two services if both are failing and both are trying to shift costs to someone else.

I declare my interest as a member of the three-person Dilnot commission on social care funding. Our 2011 report had cross-party support and was accepted in principle by the coalition Government. For less than £2 billion, we demonstrated that it would be possible to cap at £50,000 individuals’ lifetime liability to pay for adult social care. This would have made a real difference to people with dementia. Despite legislation to implement our proposals, successive Chancellors from George Osborne onwards have deferred implementation. Jeremy Hunt has now achieved what his predecessors achieved by deferring the introduction of any form of cap until at least October 2025.

This is only part of a very sorry social care saga. Successive Governments since 2010 have allowed the funding of adult social care to decline relative to the funding of the NHS, increased service demands and the true cost of care for our ageing population. This approach has reduced NHS capacity, with more elderly patients admitted to, and staying in, hospital for longer because of the absence of social care. Governments have relied on council tax increases and occasional government handouts, rather than thinking through the funding of the social care system—even though one Prime Minister said that he would fix social care within a year; guess who. Whatever glowing account the Minister may give of the Government’s track record on social care funding, the really accurate assessment of that funding is set out in the King’s Fund contribution to the Library evidence for this debate.

Asking the NHS to do more for dementia patients in its current state is totally unrealistic. I am afraid that it is a failing institution in many parts of the country: it has not met its main access targets since before Covid, it has a backlog of about 7 million patients awaiting treatment and it is as short of staff as the adult social care system. It is totally impossible to think about making huge changes to improve services for dementia if we cannot repair the basic structures of the NHS and the adult social care system.

My Lords, as both a member of the APPG and formerly a carer for my late mother, who suffered from vascular dementia, I welcome this debate and thank the noble Baroness, Lady Browning, for bringing it forward.

We are facing a tsunami of additional care needs in this country as a result of dementia, and it will require a step change from government, of what whatever political complexion. A myriad of solutions is required—some of them have been outlined today—but the noble Baroness, Lady Browning, was right to highlight a key component: parity of esteem between healthcare and social care.

Some of the implications of that lack of parity at present can be seen. It has been mentioned already that 45% of the social care workforce does not have direct training in dementia. The number of vacancies within social care is estimated to be 192,000, because there is a difficulty with both recruitment and retention of staff. The implication for individual dementia patients and their families across the country is a postcode lottery where both the quantity and the quality of care are deeply variable. For many of those families, the gap in what can be provided to them means that what they get simply does not cover the needs of the individual patient, and, somehow, they have to cope both financially and from a caring point of view to fill that gap.

If we can meet this issue of parity, there are a number of benefits. First, in many ways, we are facing an even greater difficulty than the official estimates of numbers show. Fortunately, we are beginning to see some solutions. New drugs are likely to appear in the near future, and they will at the very least slow the progress of dementia. That is a very good thing—it will mean that people live longer—but the implication of it is that, ultimately, we will probably have a lot more people with dementia. It will also shift the pressures from healthcare directly and to a much greater extent on to social care.

My Lords, I welcome the ability to participate in this debate and I congratulate the noble Baroness, Lady Browning, on securing it. I wanted to participate in it as I have family members and political colleagues who, sadly, have either died as a result of dementia or are currently living with it. For me, one of the keys is diagnosis and the need for greater levels of investment in diagnostic tools and then medicine to slow down the progression of the illness.

More than a quarter of a million people are living with undiagnosed dementia in England. More than one-third of people with dementia in England and Northern Ireland do not have access to a diagnosis and, therefore, to the vital care and support it unlocks. Like the noble Lord, Lord Weir, I am a member of the APPG. We readily know the problem in Northern Ireland, and I agree with him that there is definitely a measure of equality in the integration of health and social care.

Part of the problem to do with diagnostic tools is the lack of magnetic resonance imaging and computed tomography scanning capacity in the memory assessment pathway, and lack of positron emission tomography scanners for accurate diagnosis of dementia subtypes. We have one of the lowest per capita ratios of these scanners in the OECD; we are behind Russia, Slovakia and Chile. Can the Minister advise on what steps the Government are taking to further invest in diagnostic infrastructure for dementia?

Furthermore, with the Government’s proposed reforms to the MHRA, cutting-edge medicines could be made available in the UK much more quickly than previously. This includes drugs such as lecanemab and donanemab—the first drugs proven to slow down the progression of Alzheimer’s disease. This means that the NHS must also be supported to prepare for this prospect. I therefore ask the Minister to provide details on what steps the Government are taking to prepare the NHS to deliver ground-breaking treatments such as those already mentioned. There is also a need for an adequate long-term social care workforce strategy, which has already been referred to by the noble Baroness, Lady Browning.