This year’s World Alzheimer’s Month theme of post-diagnostic support could not have been more needed. Post-diagnostic dementia support in the UK is insufficient and currently failing thousands of families affected by a recent diagnosis of dementia, leaving them living with a life-changing condition with limited understanding, capability or tools to manage its symptoms.
A recent Alzheimer’s Society poll found three in five people affected by dementia felt they didn’t get enough support over the last 12 months and one in five family carers said a lack of support meant their loved ones had ended up in A&E. A diagnosis should unlock vital support and treatment but currently too many people are being left to cope with their diagnosis alone, given minimal information and sent on their way.
At Alzheimer’s Society, we are calling for urgent improvements that will change the outlook on post-diagnostic support and we’re extremely proud to fund innovative research improving this experience for everyone.
Professor Claudia Cooper (UCL) is developing training and support programmes to understand how they can best help family and paid home carers, while the University of Exeter’s IDEAL programme is the largest study of living well with dementia in the UK, shaping new policy, interventions and initiatives for dementia care.
Another exciting project is Professor Charlotte Clarke and colleagues’ ‘GO (Getting On with life) Programme’ at the University of Durham – a seven-week online programme supporting people to live well with dementia after their diagnosis.
Crucially, Professor Clarke’s programme puts people living with dementia at the centre of their support and is unique in being one of the earliest post-diagnosis interventions developed in partnership with people with dementia and designed for use during the pandemic. Over a series of online meetings, participants talk through topics such as; relationships, restoring confidence, being valued and respected by other and getting on and living their life.
Completed in sessions with facilitators of the programme alongside other people living with dementia in a safe, respectful and welcoming space where people share their experiences, participants develop their own goals, based on their needs not an imposed agenda.
Through trials, Professor Clarke and colleagues have developed core values and principles, which are woven in the sessions; so that everyone living with dementia can learn new things and can support each other and crucially they are doing this ‘with’ each other, not ‘for’ or ‘to’ each other. These are two values fundamentally missing from post-diagnostic support in mainstream healthcare.
Professor Charlotte Clarke, lead researcher of the GO Programme said: “The support available after a dementia diagnosis is worryingly inconsistent. Even when people do access
support, many find it’s a one size fits all approach and doesn’t take into account specific lifestyles and needs.
“Every person’s dementia is different, and with the support of Alzheimer’s Society we’ve developed ‘GO’ to put that person in the driving seat of their support.
“People with dementia are the experts in living with dementia, so they have a key role in the delivery of any post-diagnostic programme, through their experiences and information they share with each other. We’re creating a safe, respectful space where their needs and voices are heard.”
Early trials of the programme have been hugely positive, with encouraging feedback from participants with dementia who said they felt empowered, listened to, and supported as experts through experience.
We’re proud to support care research like this. But we can’t do it alone. While the recently announced National Dementia Mission is a huge step forward for the dementia research field, we’re on a knife-edge when it comes to funding. We risk losing forward-thinking initiatives like this unless the £95m promised by the Government is delivered through the Mission.