Alzheimer’s Society Tackles Healthcare Inequalities For People Living With Dementia

The Alzheimer’s Society has awarded £2m to a groundbreaking research project designed to tackle healthcare inequalities and improve access to care for people living with dementia in the UK.

The announcement was made at Alzheimer’s Society’s Annual Conference, where the Minister of State for Care, Stephen Kinnock, made a keynote speech.

Around one million people are living with dementia in the UK and over a third do not have a diagnosis so cannot access the support, care and treatments they desperately need. A report* commissioned by Alzheimer’s Society from the Office of Health Economics highlighted a staggering 110 healthcare inequalities faced by people living with dementia and 28 that specifically affect carers – including gender, financial pressures, health and well-being.

Alzheimer’s Society called on research teams to come forward with big, bold ideas to ensure a fairer deal for people living with dementia and have awarded the £2m in funding to the GRACE** Programme: Better Dementia Care for Everyone.

The programme, led by Professor Claudia Cooper and Jessica Budgett from Queen Mary University of London, aims to make sure that good quality, evidence-based care is available routinely in the UK, starting with areas with the highest needs.

GRACE will adapt resources for under-served groups to ensure they are accessible – for example considering language barriers and culturally appropriate care. The research team will explore how this new care programme can support people living with dementia in areas which have among the worst national levels of health inequalities, working initially in Belfast, Humber and North Yorkshire, North East London, and Kent and Medway. Working with people living with dementia and their families in these areas, the researchers will uncover the unique barriers they face when seeking support.

The GRACE programme aims to make the UK the best place in the world for people with dementia to receive care and support, wherever they live and whatever their background – so no-one is left behind. It follows on from the NIDUS-Family programme***, also led by Professor Cooper and funded by Alzheimer’s Society. NIDUS-Family is a package of care and support which focuses on practical changes people can make, with sessions built around the specific priorities of the person with dementia – such as increasing time spent in enjoyable activities, improving sleep or for carers to have more time to focus on their own wellbeing. It can be delivered to the person with dementia and family carer together, or the family carer alone, by phone, video-call or in person.

Professor Fiona Carragher, Chief Policy and Research Officer at Alzheimer’s Society, said:
“Dementia hits hardest where health inequalities run deepest. Early and accurate diagnoses, access to specialist, personalised dementia care and dedicated support for carers must be a priority – so that everyone receives the help they deserve.

“Alzheimer’s Society has brought together decision makers from Government, the NHS and local authorities to discuss how we can do better. No one must be left behind.

“That’s why we’re funding research like the GRACE programme, which will bring much-needed support to underserved communities that historically haven’t had easy access to good dementia care. We must continue to work together to tackle health inequalities barriers. It will take a society to succeed.”

Stephen Kinnock, Minister of State for Care, who spoke at today’s Alzheimer’s Society’s Annual Conference said:
“I know all too well the terrible toll dementia takes on families and how demanding caring can be – I saw how much my own dad did to look after my mum.

“The government remains committed to shifting the dial on diagnosis and we’ve already stopped the downward trajectory on diagnosis rates. Our Modern Service Framework for Dementia will seek to end unwarranted variation in care, putting a floor in and making access to care fairer.

“I know none of us will rest until everyone in our country with dementia is diagnosed on time. This is a once in a generation chance to transcend party politics to build cross-party support. Social care is too important to be used as a political football. Let’s roll up our sleeves and get to work.”

Professor Claudia Cooper, GRACE programme lead, said:
“This opportunity to roll out our suite of psychological support programmes to people with dementia and their families living in some of the most deprived areas, where health inequalities are highest, across the UK is so important.

“It is a huge challenge, but working alongside Alzheimer’s Society, people affected by dementia and the NHS, we can transform how family carers and people with dementia receive support after a diagnosis. My grandmother died with dementia – we were very close and caring for her has been an experience I have drawn on in this work.”

Sarah Simmonds, who cared for her father when he was living with dementia with Lewy bodies and took part in the NIDUS programme, said:
“We found that there really wasn’t much structured support once we’d received a diagnosis. NIDUS gave us a direction through the swamp of symptoms and supported us as carers – a role we’d never had before as a family. It was as if I was receiving a kind of therapy in a way – being understood, reassured and guided. That support just wasn’t available through GPs or the NHS.”

The GRACE programme, which starts in spring next year, will work with people living with dementia from underserved communities to adapt these care resources to fit their unique needs

The project will:

• Translate versions of NIDUS-Family, an online course and booklets which help family carers to support people living with dementia to remain living independently at home.
• Adapt modules within NIDUS-Family to support people caring for loved ones with learning disabilities as well as dementia.
• Create a new module which helps carers navigate moving their loved one into a care home. This can be an emotional time, particularly for minoritised groups, including those who don’t speak English.

The GRACE team are keen to hear from people affected by dementia in the regions listed above (Belfast, Humber and North Yorkshire, North East London, and Kent and Medway) who may be interested in working with the research team to develop these resources to ensure they are adapted for these specific regions and populations. To find out more, contact  graceqm@qmul.ac.uk.