At one level, it is essential to know in detail about the experiences of people with dementia and carers of their NHS and social care services. The reality is that local commissioning decisions might mean a shortage of day centres or Admiral nurses, while the brilliant work, which I fully support, in dementia friendly communities continue.
I feel ‘dementia friendly communities’ have been a great successful initiative from the Alzheimer’s Society in levelling against the stigma which surrounds dementia, and to re-engaging a level of community activism for dementia in keeping with what might have transpired in the Big Society. It is noteworthy however what the policy priorities of ‘dementia friendly communities’ (DFC) have been, and whether they can be reconciled easily with a record number of delayed discharges from hospital or 30 hour waits on hospital trolleys in the medical admissions unit for example.
Existing DFC domains, defined by Alzheimer’s Disease International, within the constructs of WHO’s Age Friendly Cities principles and tactics, include: public awareness and information access, planning processes, the physical environment, access and consideration for dementia among local businesses and public services, community-based innovation services through local action, and access to transportation.
I do not want to consolidate the viewpoint that the world of a person with dementia and carer should be solely restricted to the health and social care systems, when the whole point of dementia friendly communities is that people with dementia can lead fulfilling lives in communities. But it is palpably clear that dementia friendly communities, to seek to preserve the safety and wellbeing of those living with dementia, “it should also empower all members of the community to celebrate the capabilities of persons with dementia, and view them as valuable and vital members of the towns, cities, villages and countries in which they reside.”
But to ignore the impact of inadequately addressing physical and mental health issues, as well as accommodation of disability, are significant barriers to participation in dementia friendly communities. There’s also the issue of inadequately acknowledging the capabilities of persons with dementia.
An excellent starting point are the original data cited in “Building dementia-friendly communities: A priority for everyone, Executive summary August 2013” from the Alzheimer’s Society. While people with dementia face barriers to engaging with their community, it is argued that it is possible to make changes that can make their day-to-day lives much better. It is clearly stated that “people face psychological and emotional barriers to being able to do more in their community, alongside physical issues” it is my contention that in England, with the NHS and social care systems on their knees, people living with dementia are severely handicapped from poorly developed person-centred integrated services.
One of the most common barriers are mobility issues (59%) and physical health issues (59%). And it is further described that, to help support them to live well in their local area, 10% people with dementia and their carers “wanted improved health – related either to their dementia or another condition”. Dementia is a condition which very rarely travels alone. A person is unlikely to live solely with dementia, but also with a number of other conditions. The hallmark of dementia is its complexity, and this will inevitably be reflected in a response from ‘dementia friendly communities’.
In both domestic and international policy, it is wholly laudable that, for example, “community-based solutions support people with dementia in whatever care setting they live, from maintaining independence in their own home to inclusive, high-quality care homes”, but with inadequate attention, say, to care planning (including advance care planning) or ambulatory case-sensitive conditions, there is a serious danger that the rhetoric outpaces the reality, and people with dementia go in and out of acute care in an avoidable way.
In the learning disability field, it is a priority to acknowledge that children and adults with profound and multiple learning disabilities are, like everyone else, unique individuals, but sometimes it is tempting or even helpful to talk about groups of people who have common concerns. This can help us as a society to form a response to make sure that people’s human rights in certain communities are upheld. However, it is vital that we understand the distinctive needs of people who are often excluded from society, and, totally irrespective of the medical argument for the different causes of dementia, no one person with dementia is the same as another. It is only by focusing on their needs and rights, and working to remove the barriers they face, that people with cognitive disabilities will achieve their rightful place in society.
My first supervisor in Cambridge was Prof Simon Baron-Cohen. Baron-Cohen once commented that: “The neurodiversity movement has been a very positive influence in reminding us that there is no single pathway in neurological development, but there are many ways to reach similar end-points. Stigmatising anyone, whether they have autism or any other characteristic, is wrong, since the point about these labels is not to pick out the person in order to make their lives worse, but to help others understand their special needs and qualities.” Neurodiversity is defined as ‘the diversity of human brains and minds – the infinite variation in neurocognitive functioning within our species’.
And I feel embracing “differentness” is important. This does not make people with dementia ‘inferior’ in any way – just celebrating ‘uniqueness’, which we should like to do all of our fellow citizens. It is really hard to achieve this, arguably, through the broad-brush approach of macro policy of DFCs.
As Prof David Mitchell writes: “I recognize, however, that much of the diversity among individuals reflects the fact that human beings are unique in their individual learning styles, motivation, interests and experiences. I affirm that, irrespective of such diversity, all individuals can and do learn and are capable of having that learning extended and enriched by education. I recognize that all children have a right to receive a quality education appropriate to their needs.”
Recognising diversity does not mean turning a blind eye to either cognitive or physical disability in people with dementia, or poor mental health. Indeed, cascading the overall tenets of the United Nationals Convention on Rights of Persons with Dementia to local jurisdictions (“think global act local”) has become rightly fundamental.
But channelling DFCs through the ‘happy shopper’ prism, perfectly understandable through the ideological drive to ‘nudge’ or behavioural insights in the last UK government, causes a fixation problem, where measuring the outcome of dementia friendliness might come through measuring customer satisfaction of people with dementia with high street brands, rather than measuring the impact of dementia friendly communities on improving wellbeing. And yet this was a prominent aspect of the previous UK government in ‘measuring happiness’ (see, for example, this article from the Guardian in 2010).
Here the “capability approach”, first articulated by the Indian economist and philosopher Prof Amartya Sen in the 1980s is particularly noteworthy, employed in the context of human development, for example, by the United Nations Development Programme, as a broader, deeper alternative to narrowly economic metrics such as growth in GDP per capita.
The capability approach attempts to address various concerns that Sen had about contemporary approaches to the evaluation of well-being, including that individuals can differ greatly in their abilities to convert the same resources into valuable functionings (‘beings’ and ‘doings’). Particularly intriguing, one of Sen’s proposals, is that “people can internalise the harshness of their circumstances so that they do not desire what they can never expect to achieve. This is the phenomenon of ‘adaptive preferences’ in which people who are objectively very sick may, for example, still declare, and believe, that their health is fine.”
If one is a proponent of the ‘small state’, it is easy to argue that people with dementia and carers might be encouraged to overestimate their degree and extent of coping with poor health if living in a content fashion in a dementia friendly community. This might be a dangerous conclusion.
A recent study of “meaningful activity for persons with dementia” from the perspective of the family caregiver, by Dr Kaitlyn Roland, PhD, and Dr Neena L. Chappell, published in American Journal of Alzheimer’s Disease and Other Dementias (2015, Vol. 30(6) 559-568) emphasises the importance also of participating in the community for improving health and wellbeing:
“Caregivers consider activity outside the home to be beneficial for the general health of the PWD (9.7%), including exercise, leisure games, and social outings. Activity participation keeps the body strong, maintains memory, and reduces anxiety. Of those who consider the health benefits, 77.2% emphasize physical exercise as imperative for fitness, cognitive function, improved mood, and secondary muscle weakness.”
Physical health and participation in a dementia friendly community clearly then have a beneficial effect to one another. To this end, Admiral nurses from Dementia UK, clinical nursing specialists in dementia, therefore have a critical role, but underlying this is a strong sense of the importance of disability rights and acknowledgement of diversity, as all three contribute to one of the most substantial possible outcomes of ‘dementia friendly communities’ – and possibly the hardest to define of all.
And that, of course, is dignity.