We can’t afford to ignore dementia any longer
With the annual cost of dementia now reaching £42billion in the UK this devastating condition presents a challenge for everyone.
The research also reveals that most of the financial burden is placed squarely on the shoulders of those people affected. Carers and people living with dementia are bearing the brunt of these costs - taking on 63% of all dementia costs.
We commissioned one of the largest UK studies on the economic impact of dementia. The research was undertaken by CF (Carnall Farrar Ltd) using the records of over 26,000 people, dating back seven years.
It revealed that the projected rise in the number of people living with dementia poses a significant healthcare, social care, and economic challenge, and highlights the urgent need to prioritise dementia as a health and care concern.
It also showed that if we fail to act – by making dementia the priority it needs to be – the cost of dementia is set to skyrocket to £90bn per year by 2040.
Diagnosis
One of the main ways we need to make dementia a priority is by tackling dementia diagnosis.
Dementia places a significant burden on the healthcare system which increases as the severity of dementia increases.
A clear way to reduce the impact of dementia is to ensure people get a diagnosis which is early and accurate enough to help people to better manage their condition.
Dementia is the UK’s biggest killer and almost one million people are living with the condition. And yet, more than a third of people living with dementia in England and Northern Ireland, and almost half of people living with dementia in Wales, don’t have a diagnosis.
Research by Walnut Unlimited found that only 1% of people affected by dementia didn’t see the benefit of a diagnosis.
With an early diagnosis that tells people exactly which type of dementia they have, people can access support, care, and plan for the future. They may be able to access treatments such as cognitive stimulation therapy - which has been found to help improve memory and thinking skills – and, for those with Alzheimer’s disease, cholinesterase inhibitors (medication) to help them manage their symptoms and stay well for longer.
Later this year the first drugs ever that appear to slow the progression of Alzheimer’s disease may be approved for use within the NHS. However, to be eligible, people need to be in the early stages of the disease and require a specialist test to confirm they have Alzheimer’s disease. Only 2% of people at memory clinics in England and Wales get one of these specialist tests currently.
We need to see urgent action to prepare healthcare systems across England, Wales, and Northern Ireland (the three nations in which Alzheimer’s Society operates) to prepare for these treatments. This means a rapid transformation of the diagnostic pathway, together with investment in the infrastructure and skills required to roll out the necessary diagnostic tests.
Economic sense
We now have the evidence to show that investing in anything that helps to delay progression of dementia symptoms makes economic sense. As the disease progresses, total costs increase significantly, rising from £29,000 per year for mild dementia to £81,000 for severe dementia.
Despite the strong evidence of benefits of an early and accurate dementia diagnosis, as highlighted by the Chief Medical Officer in his last annual report, spending on diagnosis and treatments is equivalent to just 1.4% of the total health care costs of dementia.
Looking to the future
An ageing population means the number of the UK population with dementia will increase by 43% by 2040, with the biggest increases in Northern Ireland (51%) and London (53%).
This means that we can expect the need for unpaid care, often provided by loved ones or friends, to also grow, with 43% more people expected to require unpaid care. This is a major concern when already a third of unpaid carers spend more than 100 hours caring per week, and 16% have had to give up work to care.
Lack of prioritisation
Dementia has not been sufficiently prioritised by governments in England, Wales, or Northern Ireland. This is clear from the low levels of funding for the research, the high number of people who remain undiagnosed in the UK, and the ongoing challenges we experience with social care.
Historically, we have seen low levels of investment and participation in dementia research. In 2015/16, just £83.1m was invested in dementia research. It is this under-investment in research that means we are only now starting to see effective treatments emerging that appear to alter the course of the disease.
Similarly, though social care provides a lifeline for people with dementia, successive UK governments have failed to reform or properly fund social care.
People living with dementia are being failed by a system which offers too little support and places an unacceptable financial burden on them.
An unacceptable situation
One in three people born today are expected to develop dementia during their lifetimes.
We cannot continue to accept a situation where we only aim to diagnose two thirds of those with dementia, depriving a third of all those with dementia of the benefits we know it brings. We wouldn't accept that for any other terminal condition.
*The new research on economic impact was undertaken by CF (Carnall Farrar Ltd), a leading healthcare consulting and data science company. A full copy of the report can be downloaded here alzheimers.org.uk/costofdementia
**Walnut Unlimited conducted a 15-minute online survey (10-12 key questions for those living with dementia excluding classification questions) between 6th February 2024 – 1st March 2024, commissioned by Alzheimer’s Society. The sample consisted of 3,476 adults aged 16+ across England, Wales and Northern Ireland and a working group of four people with lived experience of dementia were involved in the development of the questionnaire and research report.
