Beth Britton, campaigner, consultant, writer and blogger; works in social care, training and mentoring care staff, and championing those living with dementia. She blogs regularly on her website D4Dementia, and in 2013 won an award for ‘Best Independent Voice on Older People’s Issues’. She has spoken at the G8 dementia summit, as well as numerous conferences, events and media interviews. We are honoured to speak to her about her own journey through dementia.
What did a dementia diagnosis mean for you and your family?
We waited ten years to understand what was causing the changes in my dad, and when his diagnosis of vascular dementia came it was partly a relief, to finally have an explanation for what had been happening over all of those years, but also a time of huge change. Dad’s doctors said he couldn’t return home because they felt he would be a danger to himself and other people, so we were asked to choose a care home for him. We had no experience of care homes and no idea what to look for, so it was a daunting prospect.
What did you learn during your dad’s dementia, and what have you learnt from the work you do now?
Dad died in April 2012, after 19 years with vascular dementia. In those 19 years, probably the most important thing I learnt was to take each day as it came, the good days and the bad days, and make the most of every moment, because those moments don’t last forever. Since Dad died, I’ve learnt from my professional work that finding ways to communicate personal experiences, particularly through my training and mentoring of social care staff, is incredibly powerful in terms of staff retaining that knowledge, acting upon what they’ve learnt, and being inspired to go further and do more to benefit individuals living with dementia that they support.
What has been your biggest surprise about dementia?
On a personal level, that my dad lived so long with it. From a professional standpoint, that in 2018 nowhere near enough progress has been made to improve post-diagnostic support, that far too many people with dementia still languish unnecessarily in hospital, that prescriptions for medications like antipsychotics are still given too readily in many instances, that non-drug therapies aren’t widely known about or tried (like music therapy for example), and that the support for the person and their family/family carers over the life-course of the person’s dementia is still patchy and largely dependent upon those individuals going and hunting down the support they need, like peer support, rather than it being automatically offered.
What moment are you proudest of?
From a personal perspective, the time I spent with my dad. It wasn’t always easy, but I’m so glad I didn’t immerse myself in further education or a career and miss spending time with my dad. Now he’s gone, I can at least look back on the time we spent together and know that I was there for him and did what I could. On a professional level, there have been so many highlights – but for all the high-profile moments, it’s when I get amazing feedback from a family I’ve supported, or a staff member I’ve trained or mentored that I get the most satisfaction. Nothing makes me happier than knowing I’ve improved something on the frontline of care and support that has made a difference to the life of someone with dementia.
What things did you do to stay connected to your dad during his dementia?
Music was a big part of the time I spent with my dad. When Dad could no longer hold a conversation, he could still sing a song, making music and singing was a vital way to connect with him. Eating and drinking together was also really important – it sounds very basic, but you can’t beat enjoying a good cuppa together. And getting outside – whenever the weather was nice we’d go out, often just into the garden. Sometimes Dad would be really engaged, other times he’d have a snooze, but it was so tranquil and relaxing – words not often associated with dementia.
How do you hope your work will help people living with dementia now?
When I began my D4Dementia blog in May 2012, I said I wanted to: “Provide support and advice to those faced with similar situations, inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.” This is still my mission, and through my blogging, writing, campaigning, and particularly my training and mentoring work with care providers, I hope that I am making a difference to the lives of people living with dementia, their families, and professionals who work in dementia care and support.