Social care consultant Beth Britton shares how we can bridge the post-diagnostic gap in dementia care—and why social care providers are key to the solution.
One of the greatest shortfalls in dementia care lies in post-diagnostic support. It was virtually non-existent for us when my dad was diagnosed in 2003, and whilst you might expect things to have universally improved since then given how dementia has risen in prominence, that’s sadly not the case for many people.
Receiving a diagnosis that irrevocably changes the life of the person and their family needs to be followed by supportive interventions and signposting that respond to the needs of the individuals involved and is open-ended. NHS and third sector services pick up some of this work to varying degrees across the country, but it is often time limited and focused on the immediate post-diagnostic period. Long term, many individuals and families look for other sources of support, with social care providers having long been one source to fill this gap.
Social care providers as community educators
Well-connected, knowledgeable social care providers play a pivotal role in their communities not just through providing support services but through awareness-raising, and demand is extensive, as I found out when the Net Care Franchise Group (who run Home Instead franchises in the East of England) https://www.homeinstead.co.uk/northnorfolk/ contacted me to discuss revamping the materials they deliver in their localities.
Staff are regularly asked to give talks in-person at everything from small-scale community coffee mornings to large gatherings filling church halls, and there is demand for online sessions too. The need for knowledge is immense, with so many families living not just with dementia symptoms and their associated challenges but numerous questions that have gone unanswered about dementia. And unlike services that discharge you, social care providers generally don’t, so they truly are a lifeline for families.
The information individuals and families really needed
It’s not just essential information about medication and good communication techniques that families need, it’s the knowledge that can help the person to live as well as possible that is most often missing – everything from optimising the home environment to keep the person independent for longer to beginning life story work and trying rehabilitation techniques.
The pack I worked on with Net Care Franchise Group, entitled ‘Living with Dementia – The Essentials’, has all of this plus sections on peer support and wellbeing (both for the person with dementia and family carer(s)/members), with signposting to 50+ resources that I believe everyone should know about following a dementia diagnosis including Dementia Diaries, DEEP, My Life My Goals, Reading well for Dementia, Dementia and Sensory Challenges, Playlist for Life, Meet Adam and much more. We’ve included resources that have a nod to more difficult times too, like DemCon and the Royal College of Speech and Language Therapists Dementia Guidance.
It’s a far cry from the post-diagnostic mantra of, “Inform the DVLA and get your affairs in order.” Yes, these aspects are important steps of ‘life admin’ but they don’t represent anything that will help a person to cope with their symptoms or achieve quality of life. It’s also extremely important to differentiate between what the person diagnosed will need for themselves and what their family carer/family member(s) will need. Whilst there is cross-over, there is also a lot of differing need and this is addressed in the resources we’ve created.
A win-win for everyone
Creating this pack has been a true win-win. It provides essential information for the community in an accessible way, it’s adaptable to different audiences, and from the perspective of a care provider it enables them to begin to form relationships with their community long before families need support, rightfully acknowledging their status as experts in providing dementia care and support.
But don’t just take my word for it. I designed the pack with the team at Net Care Franchise Group, and I asked Laura McEwan, Director, why these resources are so needed:
“Working with Beth has been a blessing. It has allowed us to collaborate both expertise and community based experience to deliver a helpful, informative session with the benefit of real life experiences. Our healthcare and community services are so stretched; our aim was to provide unpaid carers, relatives and friends with the support and information that they need at a time that can be highly emotional and challenging. We can’t thank Beth enough and love delivering her work across our communities.”
To conclude, perhaps the best way to sum up this pack from my perspective is that amongst the many hundreds of commissions and pieces of work I’ve undertaken this one is one of the ones I am most proud of. Within the materials lies so much of what I believe families need the most from someone who once walked in their shoes, and I love the idea that this essential information will be shared with countless individuals and families to help them feel just a bit more informed, connected and supported.
