Dementia

Baroness Browning Excerpts

Thursday 18th January 2024 Grand Committee

Asked by

[Baroness Browning]

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

[Baroness Browning (Con)]

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.

There are more ways that we need parity and integration, and the establishment of integrated care systems in England provides some hope of a mechanism through which they might be achieved. There is no specific mandate for them to focus on dementia, but they are required to commission on local need.

The APPG on Dementia published a report last month entitled Raising the Barriers, which proposed local dementia strategies for each area, a named dementia lead in each integrated care system and a dementia steering group. Is this special pleading? Yes, it is and I make no apologies for it. The scale of dementia nationally is going to increase and, while we all hope that medical science will one day alleviate this challenge, this is today’s challenge and tomorrow’s and the day after’s. This would be a huge move forward, combining health, social services and the voluntary sector.

Can the Minister say what the rules are for the decision-making of integrated care systems being made publicly available? Recently, owners of care home providing for people with dementia expressed concern to me about the transparency of decision-making, particularly on the transfer from hospital to residential care for the first time.

So far, I have not mentioned the cost to the patient or their carer. We have had many debates in the House about personal expense to the individual. The Alzheimer’s Society estimates that two-thirds of the annual cost of dementia, reckoned at £34.7 billion, is paid for by people with dementia and their families, either in unpaid care or in paying for private social care. In addition, care providers often charge an extra premium because of the complexity of dementia, adding 15% to costs. Additionally, support such as NHS continuing healthcare, including for complex health needs, is not easily obtained for dementia.

I realise that the much-promised reform of social care will be the catalyst that makes the financial cost to the individual more bearable, but that is now deferred until 2025. In the meantime, there is much that can be done to bring parity and fairness to the lives of dementia sufferers and their carers. I hope that the Minister finds constructive suggestions in our contributions to this debate that he can take forward. I am grateful to all Members here and to the Alzheimer’s Society and the House of Lords Library, which provided briefings in preparation for this debate.