Five urgent reasons to improve dementia care
People living with dementia face a cliff edge of support after diagnosis, often only bouncing into services at times of acute crisis.
As the numbers diagnosed exponentially grow within the UK’s ageing population, our ambition is to test innovative and sustainable ways to provide outcomes focused support for people living with dementia and their unpaid carers.
This summer Social Finance secured funding from the Dunhill Medical Trust and Alzheimer’s Society to work alongside partners providing services for people living with dementia (PLWD), as well as other older people with complex needs, across the UK. Across the next year, these partnerships will test different approaches to measure and improve outcomes.
But why are we interested in doing this?
1. It’s a growing and complex problem
There are nearly one million PLWD in the UK, and this is expected to grow to 1.6 million by 2050. There is also a greater prevalence of dementia in Black and South Asian ethnic groups yet they are less likely to receive a dementia diagnosis as many services designed to address the needs of individuals with dementia often overlook the requirements of minority groups.
Our partnership work needs to have an intersectional lens to understand and, where possible, address health inequalities. Our work needs to explore how to improve equity of access and outcomes for PLWD from minority groups as a key cohort of the growing affected population.
2. Dementia is not the only problem
People living with dementia are often referred to solely as patients, which reduces them to their diagnosis. Conversations over the last six months with different service providers and clinicians have highlighted that our programme needs to see them as people who are not solely defined by their diagnosis. Approximately nine out of 10 dementia patients have another long-term condition. Traditionally, healthcare has been organised around specific diseases or body systems, which can lead to fragmented and disconnected care for individuals with multiple conditions. Operational flexibility is also difficult to achieve due to the progressive nature of dementia which often requires personalised services to wrap support around individual needs.
The government launched a call for evidence on major conditions earlier this year, signaling a move away from a narrow focus on specific diseases or organs to acknowledge a person-centred approach. By taking into account the entirety of a person’s health and well-being, we hope to build evidence for more interconnected solutions, maybe even building on existing services or developing comprehensive personalised care plans. A key ambition for this work is to test different person-centred approaches so that services can be accessible and equitable for all.
Both the nurse and healthcare assistant were so friendly and so professional. We feel confident that they would always be people we can trust and take advice from, and ask about anything that troubled us.
Carer in the service
3. Unpaid carers are under pressure
Dementia doesn’t just affect the person with the diagnosis. In the UK, 61% of PLWD reside independently in the community and are reliant on unpaid care from their family and friends. Unpaid carers take the primary burden of care with initial estimates that 1.1 billion hours are spent a year on unpaid care for PLWD. However, many unpaid carers are at breaking point. They feel such a loss of identity and isolation, but also stigma, that they don’t know where they can go to for support until they reach breaking point.
The estimated cost of carer breakdowns and increased demands on health and social care services can reach more than £5.3 billion a year. We are eager to focus on developing services which flexibly support unpaid carers to test if this can provide more consistent, high quality and cost effective care without compromising the carers’ or person’s health.
4. The NHS is under pressure
Dementia has emerged as a major issue within the national healthcare landscape. In 2021, the estimated cost of dementia care in the UK was £25 billion and this is expected to almost double to £47 billion by 2050. Excessive hospitalisation of care at the end of life in particular is stark, as discussed by a recent Cicely Saunders Institute report, which highlights that more care could be delivered closer to home. The high system cost and known distress caused by emergency admissions and unplanned hospital bed days for PLWD demands immediate action to enhance community provision.
We have a long term relationship with the Enhanced Dementia Care Services (EDCS) in Hounslow who support PLWD to receive care outside a hospital setting. Between April 2022 and March 2023, over 300 people were referred to the service, which has had a transformational impact on the lives of PLWD and their carers / family. In turn, there has been a positive impact on local partners including primary care, acute beds and the voluntary sector. We are keen to maximise our learning from Hounslow to help areas build on existing services to provide suitable community care.
5. One perspective on a global health concern
The World Health Organisation estimates that around 55 million people currently live with dementia worldwide, and this number is projected to triple by 2050. Dementia was a significant discussion topic at the G7 summit, highlighting a shift in perception, increased investment in research, and a focus on holistic care approaches. Dementia has captured the attention of policymakers, researchers, and healthcare professionals worldwide and there is a real opportunity for leveraging this work outside of the UK.
Social investment approaches, with a dual focus on positive social impact and financial returns, promise potential to address multi-dimensional health and social challenges such as dementia care. With the UK facing significant financial constraints and a rapidly ageing population, the NHS and Local Authorities need to find more solutions. In EDCS, social investment has played a crucial role in driving better outcomes. This model has received high praise from local service providers, and as a result, they are now expanding their services through direct investment.
All of the above reasons provide an exciting but knotty issue area where we hope to leverage our own expertise and that of our partners across the next year. In order to do this we are forming five service partnerships to look at different areas for potential value creation with the golden thread to our work ensuring we focus on the outcomes that matter; both to the people affected and the system that needs to cater for the potential high volume of demand to come.
We are also excited to be establishing a Learning Community as part of our programme. This will give us the opportunity to share what we are doing and finding through our service partnerships as well as provide a platform for cross-sector discussion and collaboration as we try to identify and pursue opportunities to drive change at even greater scale.
We won’t be able to stop the rise in the number of people living with dementia across the next ten years, but we can test how to better support them with their condition to ensure that dementia doesn’t define them.
Want to know more?
To join our Learning Community and get regular updates about more about events we will be running through the year, please get in touch with Beth Phillips.
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