As another September brings World Alzheimer’s Month, there is always the temptation to write a blog that points out how much we still need to do to improve awareness, care and support for people who are living with dementia and their families and friends.
For this World Alzheimer’s Month, however, I want to take more of a celebratory stance. Over 6 years ago I began D4Dementia to, “Provide support and advice to those faced with similar situations (to those we faced with my dad), inform and educate care professionals and the wider population, promote debate and create improvements in dementia care.” My inspiration was to share some of the positive aspects of my dad’s life and for others to learn from them. As I wrote more posts, I also shared aspects of my dad’s care and support that weren’t good enough, again with the intention that others may learn something. As the years have gone by I’ve diversified from blogging to do more and more training and mentoring to make that mission real.
My aim has always been to create a legacy for my dad that wasn’t about mourning his loss however keenly I still feel it, or about beating a drum of hate for the people who let him down so badly when he was at his most vulnerable. I wanted to create positive change – I felt passionately then, as I do now, that if I could help just one person living with dementia, or one family supporting a loved one with dementia, or one professional working in dementia care and support to find the information and advice that they needed then I’d done something amazing.
I’ve since read and heard similar aspirations from so many other people affected by dementia, most notably recently from reading Wendy Mitchell’s phenomenal book, ‘Somebody I used to know’. The desire to help just one person, to scatter crumbs of hope and positivity, however small those crumbs might be and however uncertain you are of how far they might travel, gives those of us who’ve had any sort of experience of dementia a feeling that there is something good that can come out of a diagnosis and a reality that changes life forever, and in my dad’s case robbed us of him far earlier than we might otherwise have been.
Reflecting on how my work has evolved, it isn’t just for me. It’s not just for my dad either, although I hope and believe that he would be very proud. It’s for every person who’s ever felt a passion to use their experiences of dementia, or any other health condition, to help others but have wondered if A) anyone would be interested in their experiences, and B) whether they have the courage or confidence to share them.
I think we are conditioned from an early age – thanks to the school system – to view education as something delivered by people with far more qualifications than us in institutions with a track record of producing learning that is intended to equip students for whatever life holds for them. I hope my achievements encourage others to realise that personal experiences have the power to educate to a level that is just as notable. For example, earlier this year I read with immense interest about the training offered by York Minds and Voices with a course entitled: ‘A good life with dementia.’ This is a course, delivered by people living with dementia for people living with dementia. A simple but groundbreaking concept.
This course embodies the peer support element that I believe is absolutely vital in good post-diagnostic support, and I was fascinated to follow its progress. I very much hope that inspired by what York Minds and Voices did earlier this year, training courses like this will become the norm – created and delivered by people living with dementia and financially supported by health and social care organisations and commissioners. There can be no greater educators about dementia, or any other health condition, than those living with it.
I am committed to including the experiences and voices of people living with dementia in my training, whether it’s through quotes, showing films, or I hope one day with more personal involvement from people living with dementia. And of course my dad’s experiences are interwoven throughout everything I do – you might think that 6+ years after his death they would have become irrelevant, but in many respects so little has meaningfully changed in care and support, attitudes and beliefs, experiences and outcomes.
My thanks go to all of my clients and colleagues who have supported me and my work over the years, and to everyone who reads this blog, follows me on social media or has championed my work. Most of all though, I thank every person I’ve met living with dementia and their family members who have taught me something about their lived experience, and of course to my dad. Those last 19 years of his life featured some of the toughest challenges I have ever – and probably will ever – face, but I learnt more than I ever imagined possible, and the privilege of keeping my dad’s legacy alive by sharing those lessons is something I hold very dear.
Until next time…