Dr Shibley Rahman is an academic physician interested mainly in dementia and frailty. He tweets at @dr_shibley
I have often wondered what ‘essential dementia care’ looks like. It must include treating people with respect and dignity.
Failures in dementia care, sustained for a long period of time, however obligate a more detailed response. The concept of personhood was first applied to people with dementia by Tom Kitwood (1997). The concept is used generally to describe what makes up the attributes of “being a person” (Dewing, 2008). According to Kitwood (1997), personhood is ‘a standing or status that is bestowed upon one human being, by others, it implies recognition, respect and trust’. Therefore “dementia care” is potentially a deceptively simple term because respecting personhood means that people are not defined primarily by their conditions.
But the prevailing wind has been just that – doing a broadbrush approach to define people by their conditions, e.g. “dementia friendly communities”, or “frailty hubs”. In the age of guideline-based medicine, there has been increasing evidence in guidelines for multimorbidity possibly to mitigate against this.
A lot has been made of the finding that people living with dementia are “core users” of the NHS and social care. And it has been said “dementia is everybody’s business”. But these tropes are quite easy to trot out. Rather, the needs of people with dementia and their care partners often go unaddressed, despite much effort being publicly pumped into ‘dementia awareness’. And ‘people living with dementia’ often have distinct needs having to be addressed by specialists, who understand complexity, co-morbidity, polypharmacy, cognition and behaviour. It’s my belief that geriatricians and their colleagues are at the vanguard of this ‘dementia care’. “Dementia friendly communities”, despite all the best intentions in the world, may not be enough.
Just before Christmas last year, as a full time carer of a family relative with dementia, I had reason to experience at close quarters a hospital admission from start to finish. Although I am loath to extrapolate from what was essentially an anecdotal experience, I wonder about how much NHS staff ‘understand’ the actual reasoning behind campaigns such as #hellomynameis or #endPJParalysis. Last week, I was invited to attend a mock clinical exam as an observer for the membership of the Royal College of Psychiatrists. Their “CASC” exam is the equivalent of the RCP’s “PACES” exam. Psychiatrists themselves, like geriatricians, are likely to be involved in care of people with dementia and their care partners. For one scenario, I nearly fell off my chair when the candidate, a junior psychiatrist in training, explained to the actor/relative, “Don’t worry about not being able to visit your mother in hospital. There’ll be a photo of you on the bedside.” I asked her later discreetly whether she had heard about “John’s Campaign”, or about ‘carer passports’ in general, and she openly said ‘no’. Effective communication must be central to effective dementia care.
It is not an uncommon experience for many medical students to have just one lecture on dementia and delirium before their qualification. The “Dementia Core Skills Learning Framework” (“Framework”) was originally commissioned and funded by the Department of Health and developed in collaboration by Skills for Health and Health Education England in partnership with Skills for Care. The framework, launched in 2015, contains 14 themes, including “health and well-being in dementia care”, “pharmacological interventions in dementia care” and “research and evidence-based practice in dementia care.” The Framework, the result of much work, is quite interesting in itself, I feel, and easily accessible here. But again I am left wondering how many junior professionals are aware of this initiative. It is not a dissimilar problem to the lack of effective dissemination of key research findings, described here by Professor John Gladman in a recent BGS blog post.
We can all agree that people living with dementia but languishing on a trolley for eight hours are definitely not recipients of ‘essential’ dementia care. Nor are people with dementia waiting six hours ‘for transport’. The term “essential dementia care” may be misleading, in the same way that ‘routine blood tests’ may be a cover for not specifying which items are important and why. What is the point of ordering a CRP every day for five months? The competences for dementia care are clearly specified at all levels of education and training, but it is, maybe, worth stopping to think that, if your mum had been diagnosed with dementia, what level of care would be ‘good enough’? This might be a ‘race to the bottom’, but might also be helpful to clarify what is obviously unacceptable if further stresses are imposed on the NHS.
Dewing J (2008) Personhood and dementia: revisiting Tom Kitwood’s ideas. International Journal of Older People Nursing. 3, 1, 3-13.
Kitwood T (1997) Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham.
Mitchell G, Agnelli J (2015) Person-centred care for people with dementia: Kitwood reconsidered. Nursing Standard. 30, 7, 46-50.