Funding alone won’t fix the social care system | Colin Capper
The election campaign led the public to the misconception that the “dementia tax” is a new issue. The reality is that decades of squeezed government funding have left people with dementia and their families enduring inadequate care, crippling costs and impossible choices. The Queen’s speech on Wednesday will hopefully promise to create a long-term, sustainable system for funding dementia care that doesn’t leave the burden of cost on individuals.
But fixing the system goes beyond funding. The government needs to adopt a more cost-effective approach that starts with preventing or slowing the rate that people need to access services. Investing money in ways to improve quality of life – and the quality of support people affected by dementia receive from the start of the care pathway – will alleviate the demand and reduce the costs incurred at a later stage.
We know most people with dementia want to remain in their own home for as long as possible and that better post-diagnostic support and care at home can empower people to remain independent for longer, minimise unnecessary hospital admissions and help avoid early entry to care homes.
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To tackle this challenge, Alzheimer’s Society is funding three care research centres of excellence with £2m each over the next five years. Focusing on ways to measure and improve quality of life, access to post-diagnostic support and homecare, the interventions developed by each of these programmes could have life-altering implications for people affected by dementia.
The first centre will tackle the postcode lottery of post-diagnostic support for people with dementia. As a dementia diagnosis is often given through secondary services, such as memory clinics, access to these services varies significantly across regions and clinical commissioning groups.
Prof Louise Robinson at Newcastle University will lead an expert team to examine whether using primary care routes, such as GPs or community services, could improve the support people receive. Collaborating with NHS trusts and numerous individual GP surgeries, they will develop and test new guidelines for dementia care that are cost-effective and sustainable, and most importantly provide the person with dementia with consistent and high-quality support after they are diagnosed. This approach could put an end to the unfair gamble that determines the availability of support by location.
The second centre will address the shocking absence of dementia training among care workers. Although 60% of people who receive homecare have dementia, just 2% of people affected by dementia believe homecare workers had sufficient dementia training. This lack of training can cause breakdowns in these relationships that can severely affect the wellbeing of the person with dementia.
Dr Claudia Cooper at UCL will lead on improving independence at home, by training and preparing family carers and care workers who make home visits to provide better care. This training, developed in collaboration with families and homecare providers, will offer a cost-effective, evidenced way to improve care at home.
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The final centre will allow us to fully understand what affects the quality of life of people with dementia. Prof Linda Clare from the University of Exeter will continue and expand a study – Improving the experience of Dementia and Enhancing Active Life – which aims to identify ways to measure, and then target to improve, aspects of quality of life for people with dementia.
Alzheimer’s Society’s funding allows this project to continue into a second five-year phase, and importantly, to include the experiences of people from black and minority ethnic backgrounds, as well as people in the advanced stages of dementia.
The researchers will gain a representative picture spanning 10 years of what it is like to live with dementia in the UK, and devise effective interventions to create change. This longitudinal study may help us to understand how changes in the social care system, such as cuts to funding or local closures, can affect a person’s perceived quality of life.
By working in collaboration with people affected by dementia, NHS trusts, care providers and primary care services, we are developing interventions that are evidenced, cost-effective and scalable.
The cruel paradox is that even with more evidence-based research demonstrating how to improve care, without changes to the current system there will not be adequate funding to implement these learnings.
Alzheimer’s Society is paving the way to developing a longer-term solution, but we need the government to listen and act.
Colin Capper is head of research development at Alzheimer’s Society
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