A few years ago I came across a quote by Hilde Lindeman in a European report on deinstitutionalisation by Professor Gerard Quinn, which can be summarised as saying ‘home is the scaffolding of the self.’ I’ve quoted it numerous times and adapted its themes to talk about the importance of being and feeling anchored in our identity and how this is manifest in familiar people, places and things & how this should be the mainstay of effective personalised care and support.
Yet it was only today that I got ‘round to reading the full essay, which I highly commend to anyone with an interest in improving the way society responded to people living with dementia. I was struck in particular by this in her conclusion:
“when home care for people with progressive dementia is left almost entirely to family members, the familial capacity for care may be exhausted well before the benefits to the demented person of living at home have come to an end… This state of affairs is not inevitable. Had the grandmother in my story been able to remain in her home, with adequate professional help and a carefully structured daily routine, she might not have gone downhill so rapidly.”
I recognise this so strongly from my own family’s experience. Effective home-based support wasn’t available. My mum could not go supporting my dad alone. But residential care was not the answer. Nor was it what he or we wanted. It was simply the only available option. Up came my dad’s anchor (having been dragging along the bottom through lockdown in any case) and then off he drifted.
Today’s genuinely excellent new report on the future of adult social care by the Alzheimer’s Society, in partnership with Future Health, pursues a similar line of argument. In its vision for the future of social care it calls for free personalised care (my emphasis – very welcome) saying ‘It would take care beyond a set of physical tasks and enable far greater flexibility in the approaches used based on the needs and wants of the user, including far more opportunities to access care within the community.’ The report goes on to note that:
“By 2030, if no change is forthcoming over half a million people in England with dementia will require care home level support. This represents an increase of nearly 170,000 from the numbers recorded in 2019. The number of beds in care homes however is only projected to reach 450,000 by 2030, leaving a shortfall of 50,000 people with dementia without the care they need. This gap needs to be a driving force for real change. Building more personalised, community based and preventative care models will be critical to ensuring people get the care and support they need and want. Any long term social care plan should have this as a primary objective. A major part of delivering on this will be moving away from traditional ways of seeing and talking about users of social care as ‘vulnerable people’ and instead approach the challenge by asking questions aimed at eliciting a response that is personal to the individual. This can be as simple as asking ‘what matters to you?’, and then working out how this can be achieved.”
That is to say, it classifies reaching this point not as a failure to meet demand for places in care homes, but as a failure to have put the alternative community-based support in place, with the rise in demand for care home placements something to be avoided.
Nevertheless, this nuance appears not to have translated into Times newspaper piece on the report ‘shocking shortage of beds for patients with dementia’. The piece says that ‘campaigners said it was “shocking” that more than 50,000 people with severe dementia were likely to be denied a care home bed by 2030 because the struggling sector was failing to keep up with demand, underlining the scale of the social care problem the prime minister promised to fix.’ Alzheimer’s Society CEO Kate Lee is quoted as saying “It’s shocking that even if every care home bed in the country was reserved for someone with dementia, we would still be tends of thousands short within a decade.” While Kate is quoted at the end of the piece saying it is possible to achieve “a brighter, better future, where quality care keeps people at home for longer” the framing of the piece seems likely to lead readers to conclude that the urgent issue is ‘more beds’ not investing in the support people need to live well in the place they call home. The use of ‘patients’ in the headline reinforces this idea, blurring distinctions between hospitals and care homes.
It’s such a shame, because there is so much to welcome in the report, from the beautifully chosen photo on the front cover, through to the adoption of Social Care Future’s vision, the analysis of ‘the problem’, to the advocacy of free personalised care.
On the eve of the anniversary of my dad’s death – accelerated both by Covid lockdowns and by the inadequacies of the health and care ‘system’ – I genuinely am moved to see this shift in the report and wish the society great success in helping change the terms of the debate about the future. My challenge to the Alzheimer’s Society is – as it was during Dementia Action Week earlier this year – to sing with one voice, and make sure everyone is on board and understands what the organisation is advocating, otherwise we will see more misteps like this, where crucial substance is lost in the clamour for coverage or clicks.
People don’t want ‘beds’, they want a life, whatever age or stage they are at. Let’s make that our urgent mission.