Ending the taboo around dementia is everyone’s business

It’s time for a ‘Big Conversation’ about social care reform and the subject of dementia is a good place to start. Dame Philippa Russell makes the case for ending the taboo and  having a Social Care Long Term plan to match the NHS’s.

The historian Arnold Toynbee once wrote that every generation has its own taboos and overcoming those taboos will be key to better lives for all its citizens. My father, a surgeon, always said that for decades, cancer was our last taboo. In 2021 we can and do discuss cancer.  It is everybody’s business, but now dementia has taken its place.

Social care reform on the back burner

Dementia is usually a condition of later life and sadly, for people with dementia and their families, it suffers from the ageism that is rampant across our society.  Germany and Japan have embraced an ambition of creating a new narrative on ageing which celebrates their older citizens and tackles the big issues like housing and care through the lens of maximising independence and social inclusion.     But the UK has a long way to go, the Government’s will for social care reform seemingly on the back burner whilst the social care future movement gathers momentum day by day. As a society, we urgently need our own narrative on ageing in order to discuss our later lives in a rapidly changing society. 

A family history of living with dementia

I have lived with dementia in my family for 30 years. My mother had vascular dementia -spending her last years in a care home. My sister in law has dementia and COPD but lives determinedly at home with live in carers. My husband died a year ago with cancer, heart failure and Lewys Body dementia. His last years were spent in ‘shared care’, at home with myself and carers or in a nursing home depending on his circumstances. In each case, the choices were personal and real.

Our family’s story of living with dementia mirrors that of many other families. For four years, we juggled distance caring with home care services and friendly neighbours. One disastrous weekend, my mother slipped into the kitchen and added six tins of salmon to a pie nicely browning in the oven for supper. The resultant explosion wrecked the house. The fire brigade found our golden Labrador (now a nice shade of salmon pink) cowering at the end of the garden enjoying the remains of the pie that should have been our supper.

We knew it could not go on. We found a good care home. I remember crying in the car after introducing my mother to the care home staff and residents who would be her family for the coming weeks whilst repairs were afoot. I felt we had failed.

Making informed choices

But when I came to collect my mother to go home – to a smart new kitchen and adaptations for added accessibility– it was my mother’s turn to cry. ‘I don’t want to go back’ she wept, ‘I like it here, it’s such a lovely hotel’ Talking to the staff, I heard Mozart coming from the sitting room. My mother had been a professional pianist in New Zealand. Now, when she could neither read music nor indeed words very easily, she was playing Mozart by ear to a delighted audience. Finishing and bowing she swept back in. ‘I can’t come with you in the middle of a concert’ she said. We realised that she had made her choice and she was happy.

But my husband’s story is very different. He sadly combined terminal cancer with heart failure and Lewys Body Dementia. The NHS was efficient with his cancer and cardiac problems. But his behaviour could veer from happy to angry and aggressive in minutes. We were not eligible for any support from social services and the behaviours made the hospice a difficult proposition. Carers came and went. Like many others, I learned to appreciate the police and the paramedics for their  patience and kindness that I will never forget.

Selling the family home to pay for care

In the end I sold my house to cover the complex package of care which Alan now needed. It was our family home and we loved it, but it had to go.  If I had been expected to pay for Alan’s chemotherapy and cardiac surgery, there would have been national outrage. I would have featured in the BBC News and social media. Our MP might have taken the issue up! But paying £76-80,000 a year for dementia care, possibly for years to come, was somehow our family’s responsibility.

What would have made a difference? 

Firstly, if dementia was not ignored as a disability, a health condition in its own right, it would ensure early diagnosis and support.  Secondly, so many of us have impoverished ourselves to give our relatives the best possible quality of life. We got some modest continuing healthcare funding. But the cost of care escalated as the behaviour challenges grew.  A diagnosis of dementia should not be seen as the end of a life but rather a journey with opportunities and support to meet the challenges.

So, how do we take this debate forward? 

As Social Care Future recognises, we need a different social care system. Making it Real broke new ground in raising the art of genuine conversation as a better way of assessing someone’s need for support than the usual formulaic processes. But if we are to get the social care reform we want, we also need the bigger conversations and debate across all our communities. The Germans used a ‘Big Conversation’ to engage their whole population in addressing the challenges of social care and support, including the reciprocal responsibilities of individuals and the state.

A Social Care Long Term Plan

 Soon, the Health and Care Bill will sweep through Parliament – maybe as promised something on social care is coming. So, can we  start now with our own ‘Big Conversation’?  In thinking about dementia, we are thinking about all our lives – in effect we need a new narrative on ageing well (it is about all our futures!). Let’s end the taboo around dementia.

And a final thought – We have an NHS Long Term Plan, setting out ambitions and timescales, recognising that reform takes time to do well.  Could TLAP take the lead in coproducing a Social Care Long Term Plan which would draw on and underpin the conclusions of the Big Conversation to come?