Dementia is a monumental health and social care challenge and will be the defining test of our system in the decades to come— but it is simply unacceptable that there are such inequalities in both diagnosis rates and in post-diagnostic care across the UK.
As Co-Chair of the APPG on Dementia, our recent inquiry into diagnosis rates last year showed just how widespread these inequalities were and this was why I sought a Backbench Business Debate to discuss this in Parliament during Dementia Action week (13th-19th May 2024). This was held in Westminster Hall last Thursday 16th May.
Dementia is the leading cause of death in the UK. Many will be aware of dementia as a health condition but may not know that dementia is actually a collective term for various brain diseases of which Alzheimer’s Disease is the most common. Unfortunately, not enough people are aware of the scale of the problem, and how likely it is to directly affect them. This is despite the prevalence of dementia being so high, with over 900,000 people living with a dementia in Britain today, and millions more caring for their loved ones. One in three people born in the UK today will develop dementia in their lifetime. A report in 2024, commissioned by Alzheimer’s Society, shows that 982,000 people in the UK have a form of dementia. This is projected to rise to 1.4 million people by 2040.
Apart from the huge personal impact dementia has on people living with dementia and their families, dementia is a huge pressure on our health and social care system with over 70% of care home residents over 65 and 60% receiving home care living with dementia. The Government’s failure to act on the Dilnot Commission’s proposals for social care as promised in the 2015 General Election is, quite frankly, unforgiveable with 60% of the current annual £40bn cost of dementia falling on individuals and their families.
Having failed to develop a national dementia strategy, we are now waiting for the Government’s Major Conditions Strategy which incorporates Dementia into this. 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.
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 also to access new treatments and support structures.
The 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. In my Oldham constituency, the rate is above 75% and in Devon it is just 40%.
Where you live has a massive impact on whether you get a timely, accurate and high-quality dementia diagnosis. A postcode lottery on this scale for a condition that will affect one in three of us is not acceptable.
But in addition to geographical, socioeconomic and racial inequalities in dementia diagnosis, there’s also inequalities in post-diagnostic care. Of the 2300 people affected by dementia either directly or as a carer who contacted us about their experience, only 5% had positive experiences of the dementia pathway.
We know dementia will impact on many of us directly and/or indirectly. But dementia is still not as well understood by the public as say, heart disease or cancer. Few know that there are over 70,000 people living with young onset dementia – where symptoms develop before the age of 65.
We cannot afford to delay prioritising dementia care, but also research and investment. The scale of the problem is unfathomable, and we must be robust and ambitious in our approach in taking on Britain’s biggest killer.
In 2023, the APPG on Dementia published a series of recommendations from the Raising the Barriers inquiry that we believe will help address the diagnosis issues. First, we must enable diagnosis with a comprehensive dementia strategy. Healthcare should not be a postcode lottery and thus, the UK government’s approach to dementia must see a universal standard of high-quality diagnosis, care and support.
With the advent of new therapies such as Donanemab and Lecanamab for Alzheimer’s disease there is cause for hope. But we must increase diagnosis rates to enable access to these new drugs. With this, we can start to stem the tide of this disease.
Dementia is the biggest killer in the UK and we must act now
