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Social Care: Person-centred Dementia Care

Volume 812: debated on Monday 17 May 2021


Asked by

To ask Her Majesty’s Government what plans they have to ensure that future reforms to social care consider person-centred dementia care.

My Lords, we want a society where every person with dementia—and their families and carers—receives high-quality, compassionate care from diagnosis to the end of their life. The Government are committed to sustainable improvement of the adult care system and will bring forward proposals in 2021. We are working closely with local and national partners such as the Alzheimer’s Society to ensure that our approach to reform is informed by diverse perspectives, including those with lived experience of the care sector.

My Lords, I refer to my interests in the register as an ambassador for the Alzheimer’s Society and as a carer. This is Dementia Action Week. I am grateful to my noble friend and urge him that, as people with dementia are by far the majority of users of social care, the promised reforms deliver person-centred care to enable people with dementia to live in places they call home, take part in activities they enjoy and live their lives safely with meaning, purpose and connection with others.

My Lords, I am extremely grateful to my noble friend for raising Dementia Action Week, a time to celebrate the contribution of those who care for people with these conditions. I know from my own experience the incredible importance of personalised care and of being able to have loved ones at home for as long as they can safely and reasonably be cared for there. My noble friend puts the experience of living with dementia for families and carers extremely well. I entirely endorse her sentiments.

Does the Minister agree that person-centred care for dementia sufferers must include support for those who care for them? Since today’s survey by the Alzheimer’s Society says that carers are at breaking point and 95% of carers say that their caring has affected their physical or mental health, how and when is that support to be provided? Will support for carers be an essential element in the proposals for social care reform when they eventually appear?

My Lords, I completely acknowledge the pressure the pandemic put on both formal and unpaid carers. That is why we put £6 billion into local authorities, to help support them in the care they gave to carers. However, I acknowledge the concerns of the noble Baroness about the pressure of the last year and reassure her that the full spectrum of social care will be considered in the forthcoming review.

My Lords, Alzheimer’s disease has been described as a future epidemic. Without a known cure, research into causes of and treatments for Alzheimer’s and other dementias is vital. At the last election, the Government committed to a dementia moonshot, which would double research funding to over £160 million a year. Can the Minister say when this funding will become available?

My Lords, according to the briefing before me, the 2020 dementia challenge commitment to spend £300 million on dementia research over five years has been delivered already, with £344 million spent over four years. However, I am happy to clarify that point with the noble Baroness, just to ensure that I have got my briefing correct.

My Lords, one cruel aspect of dementia is how the condition gradually eats away at a sufferer’s individuality. In the context of this disorientation, with individuals forgetting who they are, one key to clinging on to personhood is family and friends. Can the Minister ensure that any Covid inquiry looks at the specific problems of those with dementia in care homes, who were deprived of any visits from relatives and forcibly isolated from familiar faces, robbing them of the resilience to fight the virus? Will he consider that, as a quarter of those who died of Covid had dementia, this one-size-fits-all approach to protecting the vulnerable did not work and makes person-centred dementia care all the more important?

My Lords, I am afraid it is beyond my reach to define the terms of the inquiry, but I entirely endorse the noble Baroness’s depiction of the very cruel dilemma we have faced over the last year: between safety—the preservation of life—and the care, love and consideration we owe to older people, particularly those with dementia. It has been a horrible and extremely uncomfortable dilemma. I pay tribute to those in social care who have sought to navigate it as thoughtfully as they could, but there is no doubt that it has been a horrible moment.

My Lords, as we have heard, dementia is a cruel illness because it strips away both individual personality and memory. Does the Minister agree that, learning the lessons of this past year, we must in future do everything possible to reinforce the message to each sufferer that they are loved for who they are, a unique person, rather than for what they are, just another patient with dementia?

My Lords, I entirely agree with the extremely touching way the noble Lord put that. To take a glass-half-full approach for a moment, I have been struck in the pandemic by the huge amount of public support for the protection of those who are older and vulnerable, including those with dementia. It has been a very touching feature of the national response to the pandemic that the country has come together to protect the most vulnerable, and I think there has been a national rethink about how we relate to those in that condition.

My Lords, we know that the costs for families of caring for those with dementia can be long-lasting and catastrophic, as the Commons Health and Social Care Committee has emphasised in setting up a new inquiry, and from our excellent Economic Affairs Committee report on social care, which found that the typical cost of an individual’s dementia care is £100,000. According to the Alzheimer’s Society, two-thirds of this cost is currently being paid for by people with dementia and their families, either in unpaid care or in paid-for private social care, in contrast to other conditions, such as heart disease and cancer, for which the NHS provides care free at the point of need. People with dementia should not bear the sole responsibility for saving and paying for their care. When will this Government address this key parity of esteem issue, end this disparity and protect people with dementia from the catastrophic costs of care?

My Lords, the Prime Minister has made it very clear that he is committed to bringing forward proposals to address this issue before the end of the year. He stands by that commitment. I look forward to the kind of cross-party and cross-society collaboration that will be necessary to address that massive generational challenge.

My Lords, as someone who knows the demands of caring for a close relative with dementia, I ask the Government to ensure that there are enough high-quality short-term placements for person-centred dementia care to give carers the chance of an occasional break. Given that person-centred care is at the very heart of the care provided by our hospices, do the Government have any plans to review the sector’s long-term financial situation and move it on to a more sustainable footing?

I pay tribute to those who deliver person-centred care. The noble Lord referred to hospices, and I am extraordinarily touched and impressed by the way in which they delivered on an enormously difficult task during the pandemic. We debated earlier the financial arrangements around hospices and the delicate state of their finances. We continue to be in touch with the industry and will take whatever measures necessary to ensure its financial stability.

My Lords, will the Minister explain what plans the Government have to invest in socially rented supported housing for people with early dementia? It is very clear that this would reduce short-term admissions to acute hospital beds, which will be necessary in order for us to meet the challenges that the NHS faces with current waiting lists. If the Government have no plans for considering this kind of supported housing, which many people who can afford it purchase for themselves, can the Minister assure us that he will ask the Government to consider this issue?

My Lords, the noble Baroness puts the case for supported housing social care for those with low levels of dementia extremely well. It is slightly beyond the purview of the Department of Health, but the case she makes is strong. I would be glad to go back to the department and find out if any measures are taking place.

My Lords, I hope I am unmuted. The impact of Covid has reinforced the evidence that early detection and intervention can help defer the worst impacts of dementia and significantly help with the quality of life of those affected, their families and carers. Can the Minister reassure the House that this will be given priority in the long-awaited social care Bill?

The noble Lord hits the nail on the head. Our entire response to the pandemic has taught us that early intervention and diagnostics are absolutely critical, and that is at the very centre of not only the NHS Long Term Plan but the departmental priorities for the years ahead. This can indeed make a huge difference to the treatment of and prognosis for those with dementia, Alzheimer’s and Parkinson’s, and we are very much focused on taking that forward.