Questions About Dementia
Dementia is the fastest growing area of need in adult social care and its rapidity varies, but there
is currently no cure and not all sufferers are elderly. As ROSIE BROCKLEHURST writes, more
than 76,000 people around the UK died in 2024 as a result of this devastating condition.
Four close friends of mine have partners who have been diagnosed with dementia of different kinds. Molly’s husband Geoff was diagnosed with Lewy Body dementia – a progressive neurological disorder – last year. Geoff was a high-flying academic. For over a decade he was the carer for Molly who has Ankylosing Spondylitis of the spine and another condition. Their caring roles are now reversed.
Dementia is on the rise in Sussex. By 2030 the figure of those affected is expected to rise to almost 14,000 people.
Reform of adult social care has reached a critical point. But Government ambition for reform may yet perish on a hill called ‘Social Care Funding’. Since 1997 more than 22 reviews and reports have been conducted and, unlike with the NHS, there is still no streamlined well-funded adult social care system.
SEISMIC IMPACT
The impact on carers when their spouse is diagnosed with dementia can be seismic, while state support is variable. Adult social care does not work in the same way as NHS care. It has been a bolted-on, raggedy service, developed in response to people living much longer – alive but increasingly frail.
‘Adult Social Care’ is like a giant jigsaw puzzle that just does not fit together. Multiple, often ill-formed pieces of the service have been created randomly over time. It is not a properly planned and supported system, not in any holistic sense that can work well and in tandem to complement existing NHS health care.
Social Care was added much later on to a welfare system set up following the Beveridge Report in 1942. Eighty years ago, people died at a much younger age – the current average life expectancy is 82.6 years although recent studies this year show a healthy old age is reducing by 13 months in some deprived areas of the country.
Molly says her husband Geoff has been able to enjoy organised walking with a group. “He was reluctant to join in at first, but he really enjoyed it. Neither of us found the organised singing group as enjoyable though. But I am sure we will find other activities for stimulation. I like the fact there is a small carers support group locally which meets in a church hall once a month.”
DENIAL OF ANYTHING WRONG
Molly feels the most challenging aspect is having to repeat things so often to Geoff and also the extent of the help he requires. She also finds there is a denial from her husband that there is anything wrong. That’s tough for both of them to deal with. She has found the charity DISC is wonderful, helping support carers and people with dementia across the region. “Being able to talk to people who know about dementia and who are really listening to you is such a relief psychologically,” said Molly, “and practical advice is very useful – such as how to apply for attendance allowance and a lowered council tax bill.”
National charities such as the Alzheimer’s Society have a wealth of information on their website, and improving funding for research into dementia is one of their joint central goals. Meanwhile, science is progressing all the time. The New Scientist recently reported on developments into a better understanding of the causes of dementia and Alzheimer’s disease.
Radical research has recently claimed the disease may not start in the brain but elsewhere in the body. Amyloid proteins found in the brain are thought to be an indicator of Alzheimer’s disease in some people, but this is now being questioned. Some scientists now say amyloids may in fact be a response to Alzheimer’s and not the cause.
Work is being done on the immune system, inflammation and more research into the effects of the shingles injection in middle age, which may have reduced the likelihood of dementia development in later life. But sadly, conclusions from such studies are still a long way off. This is not good news for the individual who wants positive medical intervention now. Meanwhile, Adult Social Care itself needs radical reform.
PRIVATE EQUITY AND CARE PROVIDERS
There have been many concerns about private equity firms being involved in care and the impact on economic stability and the quality of their business model. The Four Seasons failure was an historic case, and private equity was at the centre of the collapse of then leading UK provider Southern Cross in 2011. Investment firms have become notorious in sectors such as water and care, for taking over underperforming companies and loading them with debt, before using short-term strategies to maximise their profits for a quick return.
At a Nuffield Trust summit on 5 March, Baroness Louise Casey gave a blistering speech about creating a system that works once and for all. Casey has a reputation for competence and thinking out of the box. Compassion shone through her speech. Yet what real hope for reform is there?
“The story of social care so far is not one of neglect or indeed bad faith. We’ve gained stronger rights, better recognition and important legal protections,” she said. “But reform has remained underpowered. Commissions without delivery, rights without funding, national problems often pushed onto local councils. There is poor pay and conditions for the very workforce carrying it – a system which means some needs are barely met at all and others are met late and in piecemeal and random ways. We haven’t had our own Beveridge moment. Instead, we are left with a system with add-ons and workarounds. Sticking plasters and glue. Holding together something creaking, inconsistent and impenetrable.”
For more Information visit DISC Dementia Support based in East Sussex: discdementiasupport.org Bexhill Dementia Action: Bexhilldementiaactionalliance.co.uk Alzheimer’s Society: alzheimers.org.uk
The Casey Commission
The Independent Commission on Adult Social Care chaired by Baroness Louise Casey was established last year by the government to reform England’s social care system. Tasked with laying the groundwork for a National Care Service, the Commission aims to create a “fair and affordable” system, with initial recommendations expected in 2026 and funding plans in 2028. The independent commission started work last summer and Baroness Casey has so far recommended patient passports to fast -track help and the appointment of a dementia ‘Tsar’.
She is also due to produce a report this year with a plan for how to create a National Care Service Phase 2, which will look at how social care is funded in the longer term, is not due to report until 2028.
Demographics of Dementia
- Sussex has the sixth highest prevalence of dementia in the country.
- In East Sussex, there are an estimated 12,681 people aged 65+ living with dementia as of 2025.
- The number of residents with dementia is projected to rise to 13,960 by 2030, an 18.4% increase from 2023.
- Nationally, people with dementia occupy approximately 25% (one in four) of acute hospital beds.
- There are 120 providers of older people’s residential and nursing care in East Sussex across 165 services.
- The average cost for a dementia care home placement in the region is approximately £1,100 per week.
- There are an estimated 69,241 unpaid carers in East Sussex.
Source: the Alzheimer’s Society
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