There are many reasons for the current pressures being faced by our NHS and I have rehearsed those at some length in the weeks and months that have passed. This week I want to acknowledge the truth that if we were as a whole society to focus more sharply upon dementia and our response to that most pernicious condition then we would go a long way to addressing some of our NHS and social care crisis. I’ve had three dementia ‘prompts’ this past week which highlight for me the criticality of dementia.
I am focussing on dementia today in part because it is the Race Against Dementia Day. Race Against Dementia is a charity founded by Sir Jackie Stewart in 2016 to raise awareness and funds to enhance research and the development of a cure or treatment for dementia. It was created by Sir Jackie after his wife Lady Helen developed frontotemporal dementia and utilises the spirit and strategic thinking of Formula One to focus on this goal. The charity aims on Race Against Dementia Day to raise £127,000 and reminds us that 1 in 3 people born today will die of dementia unless we find a cure or treatment. It points out that that is the equivalent of 127,000 babies born in the UK every day and the goal is to raise £1 for each of these babies.
I was reminded of this urgent need to raise funds to promote research and the search for a cure earlier this week when I watched Kate Lee CEO from Alzheimer Society on BBC Breakfast television. In her interview she argued that dementia research which is the UKs number one killer is being neglected. On the back of a letter signed by 36,000 people Ms Lee called on the UK Government to honour its election commitments. She called for “a massive reform of social care, a visionary 10-year plan for dementia, and the National Dementia Mission funding to unlock treatments for people now and in the future”. Now whilst things are different in Scotland the challenge of under-funded research, patchy access and post-diagnostic support, and a lack of consistent and coherent vision around dementia is still the case.
My third dementia prompt this week was the chance with colleagues to meet Sophie Fraser from Alzheimer Scotland’s Brain Scotland work and to hear about the amazing work they are undertaking to increase awareness of dementia amongst children and young people and to explore ways in which inter-generational work between the care sector and children and young people can advance this work. More to come on that but you should catch their amazing video which communicates the preventative message so well at – https://www.youtube.com/watch?v=FjDAggnowz8
All of the above dementia prompts link directly into what I have been spending so much time working on in the last few weeks. I know for a fact that a disproportionate number of those who are ending up in our accident and emergency departments are older people many of whom are living with dementia. If we were able to have an adequately resourced social care system which was able to be less reactive and more formative and preventative in its delivery, then many of those individuals would not require hospitalisation or would not require it as frequently. But the truth is that despite the Herculean efforts of professional frontline social care colleagues we are only playing lip service to the priority which dementia should be for our society. We could do so much more with a dementia strategy in action which enabled every frontline social carer to be trained and equipped to the highest possible level of confidence and skill in supporting someone with dementia. The social care sector both in care home and community is crying out for resource to enable frontline staff to build on the existing innovative tools and techniques which help someone remain independent, which slow the progression of the disease, and which maximise the potential and creativity of an individual.
Alongside this I’ve been having conversations this past week which have highlighted for me just how perilous our existing social care dementia response is – never mind what we might want or should be doing to enhance existing practice. The vast majority of people who are living today with dementia are supported primarily by family carers and friends. Unpaid carers in Scotland are on the margins of notice and public importance yet their criticality cannot be over-emphasised. But they are, many of them, on their knees with exhaustion, a lack of support and resource, and lack of opportunity to have respite and take a break. Tens of thousands of people have taken the really hard decision to end their employment in order to look after a loved one and the lack of focussed support for them in that decision, especially when the supported person has dementia, is truly shameful. Our failure to care and support unpaid carers has an immediate impact on our stretched NHS and social care. Attending to system and service delivery without an equal focus on unpaid carers is folly.
At the same time many of us are deeply concerned about the potential savage cuts which are facing community based, third-sector and charitable organisations in our local communities. Faced with really difficult decisions local authorities are withdrawing funding from many projects which keep older people independent. The experience of Food Train in Glasgow which faces the real risk of closure as a result of the loss of funding is illustrative of what the umbrella body the Scottish Council for Voluntary Services warns is facing many charities across the country. It should be obvious that the loss of support organisations for older people in the community will in the medium-term result in more burden on an already creaking health and social care system. Decisions made today will result in people unnecessarily requiring care and support tomorrow and I fear that there will be a disproportionate affect upon our older age population.
Dementia cure is one that we are all seeking to work towards, to fundraise for and to struggle in a race to achieve. But alongside this we need to fight for a re-conception of priorities perhaps especially at times of fiscal restriction. A public health approach to dealing with dementia requires a focus not solely on prevention and cure though these are critical but upon the adequacy of treatment and support in our community. Dementia remains a major killer in our society but does it really receive the prioritised focus that it requires?