Inequalities in Dementia Services — [Christina Rees in the Chair]

Part of Backbench Business – in Westminster Hall at 12:30 pm on 16 May 2024.

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Photo of Debbie Abrahams Debbie Abrahams Labour, Oldham East and Saddleworth 12:30, 16 May 2024

I beg to move,

That this House
has considered inequalities in dementia services.

It is a pleasure to serve under your chairship, Ms Rees. I thank the Backbench Business Committee for granting me this debate to discuss the huge inequalities in dementia diagnosis and other services across the country. I also thank the Alzheimer’s Society for providing the secretariat to the all-party parliamentary group on dementia and for supporting our many inquiries, including the inquiry we conducted into dementia diagnosis last week, which was published in our “Raising the Barriers” report. My particular thanks go to Lewis and Connor for their briefings and for helping me to prepare for this debate.

It is a real honour to have recently been re-elected as co-chair of the all-party parliamentary group on dementia, a position that I have held since 2015. My other co-chair is Baroness Angela Browning, and like Angela I became involved in the APPG because I became a carer of a loved one who developed one of the brain diseases that cause dementia. In my case it was my mum, who was also called Angela. She was diagnosed with Alzheimer’s disease in 2002, when she was just 64, and I cared for her along with my stepfather and brother. After she died in 2012, I became the first MP to train as a Dementia Friends champion and was subsequently elected as co-chair of the APPG on dementia in 2015.

This debate could not be more timely. As you know, Ms Rees, this week marks Dementia Action Week. Yesterday I had the pleasure of sponsoring the Alzheimer’s Society’s reception in Parliament for Dementia Action Week, where we welcomed many Members to hear about the importance of a dementia diagnosis and the transformative potential of new treatments for dementia. Back in January, I spoke in another Westminster Hall debate looking at the advent of new treatments, particularly lecanemab and donanemab. Those drugs have caused huge excitement, as they mark the first ever treatments for people in the early stages of Alzheimer’s disease and could change the way that we see dementia forever. However, even in that debate I highlighted the barriers to those drugs being delivered to patients and sounded a note of caution that they are neither a cure nor a quick fix. I was really reassured that the approval of lecanemab and donanemab is going through the regulatory cycle at the moment, and we hope to hear when they will be available in the next couple of months.

The fact of the matter is that dementia is a monumental pressure on our health and social care system, but it is all too often an afterthought in commissioning. It is not commonly known that dementia is the leading cause of death in the UK. Nearly 1 million people have dementia, but of those one in three currently live without a diagnosis. Dementia costs the economy more than £40 billion each year, and more than 60% of that cost is borne by individuals and families. Those facts may come as a surprise to many, including many commissioners, but I will focus today on two important inequalities in dementia: the inequality in dementia diagnosis rates between different parts of the country and different groups of people, and the inequality between those who do and do not have access to post-diagnostic support.

First, I will share some information that hon. Members will hopefully find useful. When we talk about dementia, we are using a collective term covering the common symptoms associated with a range of brain diseases. Alzheimer’s disease is the most common of those, but they also include vascular dementia, which my mother-in-law had, Lewy bodies, frontotemporal dementia and many others. Each of those brain diseases has different pathology and as a consequence will have different therapies.

Right now, more than 900,000 people live with dementia in the UK, as I mentioned. Due to our ageing population, that figure is set to rise to 1.6 million by 2040, but I need to stress that dementia is not an automatic part of ageing, although it is more prevalent in older populations. People with dementia account for more than 70% of the residential care home population over the age of 65 and 60% of people receiving home care. Meanwhile, as revealed by NHS performance data published earlier this year, it is estimated that a quarter of NHS beds are occupied by people with dementia. They remain in hospital on average twice as long as people who do not live with the condition. Unfortunately, that reflects the crisis in our social care system and not being able to safely discharge people back into the community or to residential care.

I reflect on where we are in relation to our social care system and the opportunities that we have had, for example through the Dilnot proposals back in 2015, and I really do hope that focused the minds of all of us in what we do. I certainly will be supporting, and have for many years been supportive of, a national care service.

Diagnosis is the key that unlocks vital care and support for people living with dementia, particularly those who are struggling to manage their symptoms alone. It helps people to understand their condition. It allows them and their loved ones to start planning for the future but, as I mentioned earlier, currently just one in three people estimated to have dementia receive a formal diagnosis. The benefits to receiving a diagnosis are massive—access to new treatments and to the care and support that is needed. Alzheimer’s Society reported earlier this week that 91% of people with a dementia diagnosis saw real benefits to having received one. However, the dementia diagnosis rate in England dropped from 67.6% to 61% during the covid pandemic. Currently it is 64.8% in England—below the national target of two thirds.