Dementia is in many respects ‘the last taboo’. We urgently need to create a new narrative for dementia.
A good life for my son with a learning disability has meant living in his own house in a place that he loves, where he is liked and respected in his local community; has friends and can enjoy his art and his gardening. He has a support worker who is his ‘best friend’. Simon’s life is in effect what we all should be able to aspire to. BUT that ambition somehow vanishes with dementia. The notion of ‘a good life with dementia’ is rejected by most people, with dementia now carrying the stigma once attached to cancer.
A diagnosis of dementia too often seems like a life sentence with no parole. My husband Alan died of bowel/liver cancer and heart failure – and with dementia. The diagnosis of his cancer and his heart failure was done sensitively and well. The diagnosis of dementia was very different.
With other long-term conditions or disabilities, there will be a ‘care pathway’, acknowledging the journey to be made, but not expecting that journey to be made alone. We were told flatly that nothing could be done. Medication which appeared to slow deterioration with Alzheimer’s was not recommended for frontal-lobe dementia and anyway my husband’s medication for his other conditions precluded it.
With the cancer and the heart failure, we were offered support groups; OT assessments of the house; specialist support via Macmillan and Cardiac nurses. When I asked about an Admiral Nurse, I was told that the clinical commissioning groups would not fund one. In effect we went home, and I did my own research and of course connected to the dementia organisations.
Good care is collaborative – but finding shared care and struggling to fund it is hard: In the end – my son with learning disabilities was not coping with the changes in his father – I found a form of ‘shared care’ with an excellent local nursing home.
Alan thought it was his ‘club’, he liked going there and the staff were wonderful. BUT it was hugely expensive. As self-funders, we were ignored by the local authority; I managed to extract a small amount of Continuing Healthcare money, but I had to sell the family home and move house to cover the costs.
The care ‘package’ that I created and paid for was worth it. The medical teams that dealt with my husband’s cancer and cardiac problems were always there. But I had to create my own ‘dementia community’ on my own. The shared care with a good nursing home enabled me to do this, but at a very considerable cost and with much stress.
I can imagine the horror in the national press and on social media if I had, of necessity, been compelled to self-fund my husband’s cancer care – but with dementia, the care was seen as our responsibility. I should add that l had other care costs in the family for my disabled son and the impact was huge on the whole family both short and longer term.
We need a big public debate about what we mean by health and social care – in effect we need a National Care Service, with the iconic status and related myths around the NHS somehow ‘blocking’ social care from most people’s imagination – until of course they or a family member needs it.
All long-term conditions pose challenges, but media coverage of MND, cancer, Parkinson’s et al tends to focus on how the people and families can still live well with conditions which in many cases will be terminal.
Conversely dementia is too often presented as entirely negative, with care homes as the only care available, at often catastrophic costs. Because the diagnosis of dementia is often late, hurried and poor and without any strategic discussion about what next, neither carer nor cared for are prepared to make real choices.
We urgently need the ‘Big Conversations’ that they have had in Germany and Japan amongst others about how and where people with dementia and their families can live well. The right housing option might negate the need for any extra ‘care’. We could and should recalibrate the Care Act and make assessments (the cared for and carers) genuinely personalised, focused on ‘well-being’ rather than ‘services’ and living documents which can be reviewed and amended over time.
We need to celebrate, support and engage the workforce. Paid carers, whether PAs, traditional carers in care home and similar settings, home carers or volunteers are part of the ‘family of care’ and they can transform lives. During the pandemic, when we clapped for carers on Friday nights, most people clapped for the nurses and doctors! I clapped for all carers, paid or unpaid and the people they support.
And as a final point, I would like to ask the great British Public what they would personally like and expect in terms of care and support if they or a family member developed dementia. We need more Wendy Mitchells and Peter Mittlers to show that quality of life IS possible with dementia and to remind us that there are ‘experts by experience’ who can help us look at dementia through a different lens.
Too often a diagnosis of dementia is like a door slammed on any expectations of an ‘ordinary life’. People and families affected by dementia need to break the silence and help us all to re-imagine lives worth living with dementia. As the TV adverts constantly remind us, we are worth it!
Dame Philippa Russell DBE is Vice-President of Carers UK and a Board member of TLAP and SEEFA (the Southeast Forum on Ageing).
She has worked nationally and internationally for many years to support family carers as active partners in co-designing and co-producing better futures for those they support.