The distinction between ‘medical’ and ‘social care’ is effectively an arbitrary one for many people with dementia, but this distinction has a disproportionate impact. When I give my ‘Dementia Friends’ session once a month, I emphasise that dementia is caused by conditions of the brain. The big ‘hitters’ in dementia are Alzheimer’s disease, frontotemporal dementia, vascular dementia, diffuse lewy Body dementia, posterior cortical atrophy, and many more.
Despite all having their own medical (including biological) footprint, I urge people to see the person not the dementia. As a junior physician many years ago, I would often hear senior consultants in a large prestigious teaching hospital say words along the lines of “Don’t worry about him – he has dementia.”
I essentially feel that Dementia Friends has been a huge advance in educating the general public about dementia – but we were coming from a low baseline. As a society, I feel it’s imperative to ask ourselves why people on receiving a diagnosis of cancer might wish to tell their family, friends or employers, and participate in the latest clinical trials, but unfortunately we appear to lag behind in dementia.
Over the next few years, I look forward to other jurisdictions cogitating about the lessons learnt from the English ‘Dementia Friends’ campaign. But we do need how to educate employers about young onset dementia, or make the system following a diagnosis less of a higgledy-piggledy mess for all concerned.
That cancer is a medical issue and dementia is a social care issue is for me an unacceptable oversimplification. A lot can be done to empower people to live well with cancer, although the piecemeal in curative or absolute remission therapy for various cancers has been remarkable. Despite a lack of a cure yet for the main causes of dementias, a lot can be done to give people with a dementia a fighting chance to live to the full.
We do have a situation where people do have to use up their life savings to contribute for care costs for someone with dementia. There are powerful forces at play which I suspect will see people living better with dementia at home rather than in residential settings, but this is, by no means, that residential care is the failure end of policy.
Nye Bevan famously wrote “In place of fear” which is indeed one of the few books I have ever read from cover from cover. Whosoever you think is best placed to capture ‘the spirit of 45’ is completely up to you. But bringing together health and care under Andy Burnham’s proposed Health and Social Care Service would be a massive step forward. I strongly recommend to you his views here.
The system currently is ‘broken’, as indeed Lucy Frost correctly articulated on at the recent RCN Congress by the seaside. The symbol of accident and emergency departments or medical admission being ‘clogged up’, with people neither being able to be admitted or to be discharged from hospital. The issue of delayed discharges is important – it is equally important to state that investing in clinical specialist nurses, with special regard to the personal plans of NHS patients and coping strategies of carers, and a flourishing social care workforce are essential. Investing in dementia advisors or dementia support workers is no less important either.
The voluntary sector have a pivotal part to play, and indeed the concern is that in relying on them to increase the capacity of the system overall, we are leaving behind a malnourished State. Social care funds have not been ringfenced since 2010, and indeed have been consistently and progressively diminished. What happens to social care funding in the next comprehensive spending round is going to be critical to watch.
I’d personally like to see social care not to be viewed only through the prism of crisis management, although practitioners in social care undoubtedly have a huge part to play there. With correct investment in workforce training and performance, social care practitioners have an unique opportunity to help people with dementia and closest ones to live as fully as possible. This is sadly not where social care funding from recent years finds itself.
While there is a lot to be down to break down barriers, such as training paths, funding streams, operational processes, differences in strategy, a National Health and Social Care is a necessary first step in making ‘parity a reality’. Otherwise, parity of esteem, like integration, is yet another slogan theme where there’s been all foreplay and no action.