As a former carer to my dad, National Dementia Carers Day is close to my heart. My dad lived with vascular dementia for 19 years, going ten years without a diagnosis and then spending the last nine years of his life in care homes. When I meet carers now, through my work as a Freelance Campaigner, Consultant, Writer and Blogger, I often find myself saying: “I was once where you are now, and have some idea of what you are going through.”
“Some idea” because no two experiences are the same. For a start, I hope very few people would go ten years without a diagnosis now. NHS initiatives around timely diagnosis, and more controversial ‘case finding’ policies should mean that the development of dementia is picked up sooner. Spending nine years in care homes is also not what most people would want, and is avoidable with good post-diagnostic support that takes a whole family approach, albeit the holistic model I have in mind is far from the norm for everyone.
But whatever the differences in all of our caring experiences, there is something that unites and binds people who care, or have cared, for loved ones living with dementia. Perhaps because dementia physically affects the brain of the person living with it so profoundly, and the complexities of the brain make it an organ of mystery in so many ways, the resulting emotional effects on those caring for a person with dementia aren’t fully understood, with many carers struggling to acknowledge or cope with their feelings.
Having taken part in many carer-focused events in the five years since my dad died, meeting people with hugely diverse caring experiences, I’ve sometimes been asked why caring for a loved one with dementia requires any more recognition than any other caring experience. In essence, the answer is it doesn’t. Whether you are a parent-carer, a young carer, a sandwich carer or an 80+ carer, and whether the person you care for is living with cancer, a learning disability, MS, heart disease or a mental health condition, you will experience a myriad of challenges.
The uniqueness with dementia is the breadth of people living with one of the numerous types of dementia, the duration the person could live with their dementia, the degenerative and terminal nature of dementia, and the historic lack of understanding, support and funding for families affected by dementia. Living well with dementia doesn’t happen within traditional health and social care support models, and as a result so many people with dementia and their families fall through the gaps, left to fend for themselves, often just waiting for a crisis.
My wish as we celebrate everyone caring for a loved one with dementia is that those gaps become smaller and the crises fewer. That people with dementia and their families have the awareness we never had when my dad was developing dementia, and access to the knowledge that makes your choices more informed. That you have a named professional to support you, and the education you need (either offered or researched yourself) to understand what living well with dementia means in practice. And most of all that you don’t feel alone – I was once where you are now, and even faced with many difficulties I shared some beautiful moments with my dad. Now my dad has gone, those memories are the ones I hold in my heart and cherish.
Film 1 – What I believe carers need and how they should be recognised as experts
G8 Dementia Summit film – My experiences with my father
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