The fact that dementia care and support are so fragmented in the devolved administrations of the UK means that a cost saving in timely diagnosis in the health budget will not easily be apparent in national accounting of improved quality of life in the social care budget. In many ways, the dementias constitute a ‘final frontier’ as an issue in society. Anything can happen to anyone at any time, and is it inevitable that we must all die of something. That there are more of us living longer is a testament to various things, possibly not least particular lifestyle or ‘risk reduction’ decisions. More of us living longer will mean more of us developing dementia in all likelihood, as we know the risk of developing dementia increases with age. I heard a joke recently that the only part of a hospital you would find soon not populated with people with dementia would be the special care baby unit, but this is clearly to exaggerate the point.
The dementias, over a hundred of them, and of which Alzheimer’s disease (more correctly a syndrome) is the most common, are commonplace. You’re pretty likely, at the very least, to know someone who knows someone with dementia. The disclosure of a diagnosis of dementia can appear as if the ‘professional’ least wants to talk about it, but the ‘patient’ wants to find out as much as he or she can. Dementia is not just a condition of ‘old age’, however, and as a society we need to have a mature attitude for people say in their 40s who see their trajectory of friend and family life, and/or employment, disrupted. At one level, they are all conditions of the brain, and we mean them currently to mean chronic, progressive conditions which get worse. There are ‘symptomatic’ treatments, often very limited in time and scope (but not meaning they’re not “worth a try”). But a disclosure of diagnosis is never solely to one person – or at least should never be solely to one person. Nearest in close relationships are inevitably involved, and have hopes, worries and expectations about the future. To turn around the iceberg (erroneous) belief that all people with dementia are in ‘advanced stages’ has not been easy – and for people who have done this credit must be placed where credit is due.
As the classic Ian Dury song goes, there are indeed ‘reasons to be cheerful’. We know a lot more about the science of dementia. There’s a lot more of us living beyond “young” or “mid age”. It has recently had the political spotlight shone on it, but with this scrutiny must inevitably come responsibility. But, for some, the diagnosis can come as a ‘devestating shock’, in that society has conditioned us to fear dementia as more than other entities such as cancer, where there has been marked medical progress. But – piecemeal improvements with time will come for particular medicines, maybe for some with particular genetic or structural footprints, where we can chip away at an iceberg. It might well be the case that particular genomic specs will have a rôle to play here. To have framed it as a ‘cure by 2025’ might have been political expedient in providing a robust vision, but was always inherently flawed. There is a huge amount of research being done into research, and inevitably we all have to be mindful of not reinventing wheels. Much of this research, like government reports, has been done before. Replication is useful, but not when resources are scarce and there are significant opportunity costs.
Dementia, more so than many other medical conditions, is profoundly human. It has been necessary and proportionate to see the person beyond a mere diagnosis. Dementia never travels alone, and it’s not uncommonplace for a person with dementia to be living also with five or six other conditions such as lung disease or heart failure. This means that dementia, unlike many of the societal challenges facing us previously, is not simple. It made sense for governments to ‘solve’ other problems such as outbreaks of communicable disease or ‘easier problems’. But there are strong reasons why a national ‘strategy’ for dementia must be nevertheless rigorously pursued, with the previous strategy having expired after five years from 2009 (in 2014). This is even more so in the case of strong drivers for care and support after diagnosis potentially falling apart at a local level due to a plethora of factors, such as postcode lottery of service provision, or even personalised health and social care budgets. We need to renew our contract with the growing number of people with dementia in the UK, approaching now one million, and the solid huge army of carers paid and unpaid. Without unpaid family carers, the system following diagnosis would truly implode – and preserving their health and ability to cope is essential.
It is essential that with our improved knowledge of the specifics on dementia we are able to diagnose the type of dementia accurately, and have the skills to do this wherever. The distinctions between primary and secondary care are getting increasingly blurred, as we progress, albeit at snail’s pace, down the pathway of integration. Medical professions know not to give certain drugs in certain types of dementia, to avoid making things worse. But much more importantly – the attitude of ‘nothing can be done’ must be turned around; if a person has complex visuospatial problems following a dementia such as posterior cortical atrophy, the needs of that person must be attended to by occupational therapists, or if a person has complex linguistic problems following a dementia such as primary progressive aphasia that person must be attended to, for example, by a speech and language therapist. If a person is prone to eat sweet foods and drinks in progression of dementia, he or she should have a dietician’s input. If a person develops problems in movement or gait following a dementia, it makes sense for him or her to see a physiotherapist. This enablement narrative which is emerging puts to full use the skills base of the allied health professionals, and this expertise is much needed in the anticipation of care needs, or care planning, say for living life to the full and in ‘avoiding admissions’ to hospital care. Continuity is king.
But a national strategy in the UK, where people with dementia and carers get help in the right way, right place, right time, is a testament that we as a society wish to promote wellbeing as well as quality of care, from diagnosis to beyond death, wheresoever that is, at home, in hospital, in a care home, or in a hospice, for instance. Dementia is not an area which respects traditional boundaries – e.g. young vs old, or health vs social care, requiring a true multidisciplinary boundary-less approach. The complexity of living with dementia means that it is no longer feasible for people to ‘blame’ people with dementia, calling people who are distressed due to a combination of pain and difficulties in communicating as ‘challenging’ – or people with dementia who talk round a subject as ‘confabulating’ – or people who are not engaged in environments promoting contentment as ‘agitated’ – or people who want to go for a walk but haven’t made up their mind as ‘wandering’. “Dementia friendly” care, in as much as the term is genuinely useful rather than a marketing gimmick, is much more than the décor and colour scheme of buildings, also puts personhood first, in other words not having a rapid turnover of staff, or having staff who are too burnt out to care. One cannot underestimate the huge power given to us from the life and teachings of Kitwood.
A national strategy for dementia is an endorsement of a long term planning commitment from society to valuing people who have contributed much to society. It is a signal to playing to their strengths. It is said that Ronald Reagan, even with advanced dementia, used to enjoy reminiscing about skills he used in employment in his 20s. But the fact that ‘dementia never travels alone’, and that comorbidity is a norm rather than an exception, means that the national infrastructure has to be fit for purpose, with both generalists and specialists in the workforce, building on the great work in ‘awareness’ from groundbreaking initatives such as ‘Dementia Friends’, electronic patient records, but also a shift in ethos, such as not dosing people up inappropriately in care homes with antipsychotic drugs, greater readiness for advance care planning, access to key components such as legal advice or appropriate housing, a willingness to engage with palliative approaches or end of life when the time comes. The infrastructure must accept also some unpalatable truths – such as we may not be able to provide for the complex needs of residents in care homes when other solutions might be more appropriate, such as community nursing or hospital at home. A more timely diagnosis will mean more people living knowing the diagnosis of dementia than before, and this means a greater responsibility for the signposting of knowledge and information beyond ‘silos’ to encourage wherever possible independent living. And this ethos – in keeping with the regulatory codes for the NHS and social care for example – must fulfil the essential safeguarding and safety obligations from professionals, making sure care is not delayed (say in getting out of hospital or getting into a residential home), health needs (both physical and mental) are not simply ignored irrespective of care setting. There inevitably needs to be a political, social, economic, legal, technological and financial/economic commitment for this renewed dementia strategy with integration centrepoint to reveal itself.
The narrative has though undoubtedly changed in other ways. The link between dementia and disability is much clearer in people’s minds, as are the fundamental human rights of people living with dementia (and reciprocal ones from carers) impacting on all aspects, diagnosis, care and support, formal and informal. With this greater definition it is hoped there will be accompanying a greater respect and dignity – and a stronger sense of solidarity, reciprocity and citizenship. No longer can research and service provision be ‘done to’ people with dementia and their closest, but rather the attitude should be ‘done with’.
One can only believe in choice and control if the system is not impoverished. We are lucky in the UK in not being a low income country, where different considerations of equity are inevitably involved. But nonetheless we should all be on our guard against inequality, the social determinants of health. Knowledge is power, but likewise ignorance is not bliss after all? We know the numbers of people living with dementia and caring are increasing. We know this could need more resources. We know there’s a benefit from timely diagnosis. We know there is an obligation for high quality of life and quality of care for all involved. We know the wider world has to have a sharp focus on inclusivity and accessibility, which goes beyond ‘friendliness’, but we’ve come a long way in attacking vile stigma and prejudice.
But above all – a renewed settlement for dementia is needed nationally, with integration in pole position.
Dr Shibley Rahman
London, August 2016