In some parts of the country, service provision, within the NHS and social care, and between primary and secondary care, is being re-designed. The aim is to focus on better outcomes for clinical care, so that a person can live as well as possible independently in the community, but have essential access to acute services as or when required.
Only last week, the British Geriatrics Society and the Royal College of General Practitioners showcased some outstanding concrete examples of integrated care for older people living with frailty. I feel that the themes of their analysis, and real examples, resonate with some of the themes in my own thesis on enhancing health and wellbeing in dementia using a person-centred integrated care approach. Bear in mind neither of us had no idea what the fruits of our labour were!
To promote the best quality of life and care, you really need a handle on the best quality of evidence from here and around the world, and be willing to create some of the research of best practice yourself. There are some ‘enduring themes’, like the complexity of the real conditions of real people, often numbering quite a few – not just ‘frailty’ or ‘dementia’, requiring effective communication between various disciplines and good care planning. Knowing how to transition from living with a condition to preparing for a good death through palliative and end of life approaches is important.
If you look at the finalists for this year’s Alzheimer’s Society 2016 dementia friendly community awards, you’ll see great examples of dementia being local priority. The aim is clearly to make the community more ‘dementia friendly’, including for example local businesses, reminiscence clubs or arts or theatre. I indeed discuss this approach in the new book under the construct of ‘promoting wellbeing’, a pivotal clause in the Care Act (2014) (s.1(1)).
This for me is one of the greatest historical ‘strengths’ of the dementia friendly communities approach. Using such vehicles, there can be greater understanding of what the particular needs and expectations of people living in the community might be. And underlying this is a much improved practical knowledge of what dementia is, facilitated through ‘Dementia Friends’ from the Alzheimer’s Society.
There is much to celebrate here in this approach. We should easily wish to build on these initial first steps by widening such projects so that they are not just ‘dementia friendly’ but (all) ‘inclusive environments’ or ‘accessible environments’ in keeping with a rights-based approach. I talked about the need for such an approach as far back as March 2014 on this very blog.
It is clear from the 2020 Dementia Implementation Plan that ‘dementia friends champions’ are to be given support in rights based approaches, and organisations as diverse as ADASS and the civil service (as well as high street brands), will further ‘roll out’ DementiaFriends. We need to build on this initial success such that it benefits health and social care providers, not just these parties and the Alzheimer’s Society, in embedding a human rights based approach throughout the health and social care system. That way, health and social care professionals and practitioners, and regulators, can all be focused on abuses of human rights, including all too frequent examples of neglect and abuse. The lack of ‘caring well’ in the Dementia Intelligence Network sticks out like a sore thumb, and a bit of let down for great organisations such a TIDE carers, and those trying to promote clinical specialist nursing care, respite care or domiciliary care.
On p.16 of this implementation plan “Prime Minister’s Challenge on Dementia 2020”, the delivery plan target is cited as,
“All health and social care organisations over time recognise dementia friendly communities and the benefit of them and sign post people affected by dementia to their local dementia friendly community“.
And it is indeed telling that there are no finalists showcasing best practice in integrated person-centred care in a health or social care institution in the 2016 Alzheimer’s Society Dementia Friendly Communities finalists list, but with funding for the NHS and social care having been driven to breaking point from the current Government in the last few years this is not altogether surprising.
In ‘Dementia Friendly Communities v. 2.0’, it would be a positive thing for professionals in acute hospitals, for example, to be able to see adequately staffed wards with no rota gaps, where there is not rapidly turnover of burnt out staff, where patients are not abandoned onto ‘outlier wards’, i.e. the opposite of ‘person centred care’. The acute hospital, where many people with dementia can end up for medical treatment at some stage, arguably needs to be ‘dementia friendly’ too, but not necessarily badged up by the Alzheimer’s Society (for which the BSI accreditation scheme might not be ideally placed to reward in any case.)
And this is where indeed the Alzheimer’s Society does need to improve vastly in its ability to ‘let go’ to allow others space in providing care. There is a huge demand for specialist nurses, including Dementia UK’s Admiral nurses, in offering high quality dementia services, such as caring for the carers, palliative and end of life care, support, training, and advocacy, which simply cannot be met by people trained to a lower level of expertise, including Dementia Advisers and Dementia Friends. It is ubiquitously accepted that Dementia Friends do not offer the appropriate level of expertise needed to deliver high quality of care in settings such as hospitals and hospices. Furthermore, as Admiral nurses work across various settings and share a ‘common vocabulary’, they are ideally placed to ensure cost-effective continuity of care, delivering outcomes such as avoiding hospital admissions or transfer to residential settings.
Some of the emphasis needs to be changed also for ‘dementia friendly communities 2.0’ away from strong marketing of the Alzheimer’s Society and high street brands in offering competitive advantage. Just because a business claims to be ‘dementia friendly’ and seeking enhanced profit doesn’t always mean it offers a better customer experience for a person with dementia nor family member.
I feel in dementia friendly communities 2.0 there needs to be a shift away from consumerism promoted somewhat mischievously (and fraudulently sometimes) as ‘choice and control’, and more towards better quality human relationships between people. This is ironically in keeping with the original Philip Blond formulation of the ‘big society’ under which climate dementia friendly communities emerged so easily under a Tory government. This thing called ‘social health‘ can mitigate against the profound lack of social inclusion which can accompany a diagnosis of dementia. And indeed it is even hypothesised that better social health in networks of people might even be beneficial in preventing decline or further progression of dementia. This is interesting, and of course pivotal to the World Health Organization’s plans for community based rehabilitation and ‘sustainable development goals’.
I think we need to open up the market much wider than the Alzheimer’s Society to develop ‘inclusive environments’ . People need to ‘walk the walk’ when it comes to collaboration. We should thank the Alzheimer’s Society for their brilliant work, but it is clear that this needs to be developed to a much higher level with much greater leadership from people with dementia (and not merely ‘involvement’). But the NHS, social care, and other third sector organisations clearly have an important rôle now, in the baton being passed on from the excellent and outstanding Alzheimer’s Society. This is urgent and essential for the approach in England to be harmonised with the rest of the world, including Alzheimer’s Disease International and Dementia Alliance International.