Last reviewed 5 September 2017
Jef Smith thinks that the media’s view of care is skewed towards the elderly. Who are the other groups of service users?
During June 2017 general election campaign, the phrase that dominated the discussion about social care funding, a topic which for once, but then only fleetingly, seemed in the forefront of political debate, was “dementia tax”. The term has been around for some years, describing the heavy financial burden people with dementia and their families face in having to pay for care, but on this occasion it took on an extra significance as a derogatory description of the Conservative Party’s proposals for social care funding.
Whatever the rights and wrongs of the idea, which of course had been extensively debated back in 2011 by the Dilnot Commission — whose proposals have since then been pushed further and further into the long grass — the debate was heavily skewed towards care for elderly people. The fact that the crisis in social care funding affects several other groups — people with learning difficulties, younger people with physical disabilities, people with severe mental health problems — seemed to be largely ignored. It might be thought that this omission should be put down to the over-heated atmosphere of the election, but in fact it reflects a long established bias.
Even dementia, probably the most deeply feared old age condition, affects some younger people too. It has been calculated that there are more than 42,000 people under 65 with dementia in the UK, over 5% of all dementia sufferers. Young-onset forms of the disease — “young-onset” is the currently preferred term, though “early-onset” and “working age” are also sometimes used — have a number of particular characteristics. There is more likely, for example, to be a hereditary component, there are frequently problems with walking, balance or co-ordination, and memory loss is a less pervasive feature. The lack of awareness of young-onset dementia, even in the medical profession, means that diagnosis can take longer than for an older person, and misdiagnosis — depression, anxiety, even the onset of the menopause — is sadly common.
Younger people with dementia face a particular set of problems in conducting their daily lives. They are quite likely to be in work when diagnosed, to have a working partner and dependent children, to have taken on the heavy financial commitments characteristic of middle age, to be physically active and to have some responsibility for older parents. These elements, of course, have important implications for employment, pensions and benefits. Young people with dementia rarely enter care homes, but they are equally likely to be disregarded as eligible for domiciliary care.
The relative lack of public knowledge of young-onset dementia, in a world in which promoting more widespread dementia awareness has been made a political priority, is just one aspect of the dominance of older people’s needs in planning the future of both social care and the related areas of the health service. But several other groups of social care service users also suffer from having to compete for public and political attention with what might be seen as the all-consuming elderly. Most regret that getting publicity for their needs has to be expressed as competition with a group they perceive as equally deserving of help — many of them will realistically expect to become elderly themselves in due course — but they still find it impossible not to resent that care is so often seen through the, for them, distorting lens of old age.
The young disabled
Perhaps the most assertive non-elderly group of care consumers are what often referred to as the young disabled. “Young” is of course a relative term but it is difficult to think of an alternative — other than “younger” which is equals misleading — for people under 65. Young people with mobility disabilities have on occasions shown themselves to be a particularly effective pressure group. Many are highly articulate and capable of using the faculties they retain with considerable skill, not least in attracting and organising public attention. They often live in their own homes or at least with relatives, so they have good community contacts.
Physical disabilities which are readily visible often attract sympathy, even empathy, since many of the able-bodied can identify with their problems much more effectively than they can with those suffering from, say, learning difficulties or mental illness. There is no fairness in this cruel world, but the sympathetic attention paid to young men — and women, but this group are mostly male — who have injuries incurred in warfare is readily understandable. They were “fighting for us” and we clearly owe them “a debt of gratitude”.
The concept of the deserving — and its corollary, the less deserving — seep into our attitudes whether we like it or not. Spectacles like the International Paralympics very successfully present images of supreme courage and resilience in the face of adversity, and are making a major contribution to breaking down social barriers for disabled people or at least disabled athletes. Sceptics, however, point out that those featured in such spectacular shows of ability are a minority of the people experiencing disabilities, for whom the problems of simply coping with daily living remain an abiding endurance test.
As a pressure group, the young disabled are thought by some to have had a major success in their promotion of the concept of personalisation. Rebelling against conventional systems under which professionals took decisions for them, people with disabilities insisted that they knew best what were their needs and how these could optimally be met. The fruits of that revolution persist in concepts like empowerment and co-production and slogans like “Nothing about me without me”; in the 21st century care which is not person-centred is not care at all. The Care Act 2014 even took these ideas into legislation.
The promoters of personalisation made an early resolve that power lay in cash, and their determination led to the movement towards direct payments and eventually individualised budgets for services in the community. Ironically the insistence that the service user should personally control expenditure on their care proved less popular with older people than with young people with disabilities, a differentiation which some of the latter group found difficult to accept. It is a neat example of the way in which different client groups — and of course individuals within those groups — have very varied priorities, but not everyone has the generosity to respect such diversity.
People with learning difficulties have also generally been slow to adopt the practise of personalised budgeting. If the routine running of one’s affairs is in itself intellectually challenging, taking on the burden of working out one’s care assistant’s wages, tax and holiday entitlements may prove a very unwelcome addition. Again, some of the keenest evangelising advocates of the process by which service users take control of their own finances have been slow to appreciate such hesitations, in the process playing false to their own insistence on the right of self-determination.
The learning disability community, however, has faced another problem — the fickleness of public attention. The development of services for people with learning difficulties has notoriously limped from one crisis to the next, only major scandals, it seems, ever generating a sufficient head of steam for ministers to sit up and take notice. The corollary is that as the press and politicians move into the next story, the public seems to lose interest, not least because almost everything that is proposed in the heat of the moment is shown in the cool light of day to cost money. The snail-like progress towards developing community-based services which can provide clients with sufficient support to enable the closure of large remote residential units is a testimony to a thousand broken promises.
For some reason, adult mental health’s problem has been less one of recurrent attention-grabbing crises than a long slow process of neglect. The present slogan is “parity of esteem”, meaning that community mental health should attract as much attention as health services for people with physical illness, with resources to match. Whether this campaign will achieve abiding results remains to be seen; the history of the repeated filching of money which had been allocated to mental health by authorities driven by other priorities bodes ill.
Dementia, coming full circle, rests in health service terms at the interface of psychiatry and geriatrics, and as a result has often seemed to have slipped between the two. As a problem facing not only those who have the disease and their families but also a much wider community of people who feel themselves at risk in old age if not sooner, dementia might be said to be currently having its day in the spotlight. To ask whether such a concentrated interest will last and form a permanent policy foundation in the face of competing demands from, say, education is to pose the similar question whether older people will preserve their currently privileged position vis-à-vis state benefits — the triple lock on pensions, the free television licenses for over 75s, the expensive but life-enhancing travel concessions and so on.
Society, social care emphatically not excluded, is rife with such conflicts of interest. It is not very comfortable to recognise these since acknowledging their existence comes close to setting groups against each other, notably older people versus the rest. Take, for example, those strips of pavement with a surface covered with bobbles for the benefit of blind people. No doubt a — relatively small — number of partially sighted people find them useful, aiding navigation and warning of hazards. But for much more numerous older people, people in wheelchairs or using walking frames, indeed for almost anyone with any sort of a mobility problem, they are one more obstruction to getting around with ease. To recognise this fact is not maliciously to sow divisions among the variety of disadvantaged people; it is simply an honest recognition that painful choices have to be made.