I’ve had a busy time recently and would like to share a few thoughts with you. Please feel free to challenge or comment on these as it helps shape ideas. These reflections are about the cultures of dementia care and the ways in which we all try to balance our perceptions of vulnerability, risk mitigation and expectations of dementia. Clearly I can’t cover all bases in this blog so there will be some gaps which will be filled or expanded on later.
Firstly here comes my “health warning” about this blog as I do not wish to cause any offence to you the reader. I am fully aware of the huge constant challenges which dementia brings to families who through love provide unwavering support in often very difficult circumstances. I also wish to mention the providers who are finding it tricky to balance the demands for their services with ever constricting resources. Many of these staff are going the extra mile in difficult times. These are very worrying times for everyone involved in dementia care. This blog is not about knocking these services or any of the wonderful compassionate people who strive to improve the lot of those with dementia.
The starting point then is a general consensus that we all wish to provide meaningful experiences for those with dementia. Ideally this would probably be imagined as a well structured “joined up” continuum of care from pre-dementia to end-of life. The type of care would to some extent be driven by the characteristics of the type of dementia and related challenges. Some types of dementia tend to lead to very distinctive kinds of behaviours which can be extremely difficult to fit into everyday life. Other dementias may be following a fairly predictable route with intermittent periods of challenge and adaptation to the next stage. Many may follow neither of the above and seem to be highly dependent upon other chronic conditions which seem to collectively impact upon the person with dementia. In summary, regardless of the type of dementia, everyone is different.
Services tend to be designed for a “dementia type”. This is in part to manage the resources of finance, skill mix and environment which various organisations provide. As with all care, dementia is also highly historical and the legacy of this history can still be apparent today. For ease of discussion I will contrast two types of provision: Day Care and Care Farms. In Derbyshire, we have day centres which provide a sanctuary and activities for the most isolated and vulnerable older people. By contrast we also have care farms which provide work activities within an environment of the outdoors. Both are highly contextualised in that the day centre will be shaped by their provision as predominantly indoors with attendees often showing physical frailty in addition to cognitive difficulties. By contrast the care farm will tend towards attendees who are more physically able but nonetheless may have profound cognitive difficulties. Much as the providers may wish to extend their provision to include more people their environment may hamper this as resources are required to make access easier. A day centre may be on the first floor of a shared building and so not able to support a person with their desire to walk outside most days. The care farm may strongly wish to extend their welcome to those with complex needs but cannot do so because of the need to provide an accessible toilet. In an ideal world both would be enabled to meet the diverse needs of all their attendees by the necessary resources.
The reality is less than ideal. This is not to criticise any provider at all. We do need to really consider how serious we are about meeting the needs of those affected by dementia. Today we have laws about disability discrimination and the rights for respite for carers. Oddly inclusion for older people is rarely raised as a way of securing resources. We have wheelchair users rightly demanding accessible shops, manikins with physical disabilities and clothing which is more than merely functional. Where are the demands for at least equally important rights for people affected by dementia? Perhaps it is in part because of our own values about growing old and subsequent expectations of dementia care as some hidden part of being in a community.
We tend towards an expectation of older people as vulnerable and so incapable. This isn’t accurate because many older people are managing their lives very well despite physical, sensory and cognitive difficulties. These individuals do not come to light until some crisis such as a fall or mishap lands them in hospital. The mishaps are generally addressed but the culture of risk mitigation kicks in with full force. Professionals who by the very nature of their first contact with the older person will tend towards a perception of them as vulnerable and not managing too well in the often alien environment of an acute ward. As one person commented to me recently, “God help you if you fail the kitchen assessment on the ward; there’s no release then”. Resources do not stretch to home visits and so these well -meaning professionals build up a portfolio of expectations based on their own experiences of managing people when they are often in pain, at their lowest ebb and in a strange place. These perceptions of vulnerability are reaffirmed with every new patient and among their colleagues. The spectre of possible legal challenge also looms large in the determination of the follow on care required. There are often discrepant views among families and professionals as these perceptions are considered using a somewhat differing scale of risk and getting on with everyday life. Personally I think that home visits are essential for professionals to provide nuanced post-admission care as they not only support greater accurate and informed decision making but also buffer the assumptions held by professionals about living well with old age.
And here is the crux of the matter; just as there is no one way to be an older person there is no one way to live a life with dementia. We are all different and remain so as we age. Old age and a diagnosis of dementia (or whatever) does not suddenly wipe out the individuality of the person or the key people, places and everyday which are all part of being human. Yet older people are somehow expected to not only subscribe to a general plan of being as prescribed by others in their best interest but paradoxically are also considered as more than capable of caring for a spouse with profound complex needs, running a farm and managing to sort out umpteen other matters. Why is this so acceptable? Logic suggests that these needs will change over time and that support may be required in flux. Why as a society do we expect spouses and old age siblings to care 24 hours a day when they often have their own health issues? How is it OK to provide respite only when the carer collapses in a heap of exhaustion?
Just as all families are different so are the providers. There isn’t one size fit all. The development of charitable and not for profit providers tends to evolve from the sheer bloody mindedness, vision and determination of a person who wishes more than anything to promote a better community. These organisations are often prepared to assimilate risk in their provision as a necessary aspect which is outweighed by the positive experiences of their provision. These tend to work hard to include anyone who wishes to try their services by individualism approaches towards risk analysis. However this isn’t all clear cut and often compromises are made in collaboration with all concerned which takes time and effort.
By contrast, larger charities and statutory organisations are risk adverse and work towards not mitigation but annihilation of risk. Annihilation of risk can be readily identified by a series of actions including none engagement, citing professional boundaries of practice, regulatory sanctions and a general “not getting it”. This has the effect of some organisations rendering themselves to a mire of stubborn protocols, procedures and creative distractions from the core remit. Ultimately these organisations become stuck in an attitudinal quicksand of along the lines of “this has always worked” and “we know best”. These practices obscure those who are arguably most vulnerable as they are refused access to services on the basis of being too risky. So growing old with dementia becomes a risky category.
So where does this leave the future of dementia care in the community? We have a range of highly visionary innovative smaller local organisations who are pushing the boundaries of what care in the community can be. These organisations do not tend towards securing monies from the statutory providers because of the very divergent perceptions of the values they hold about what makes good financial sense in relation to well-being.(They also do not have the energy to complete 40 page funding applications). Care farms where individuals derive immense pleasure and confidence by shovelling the shit and being spat on by Alpacas tend to have far less chance of financial support than say the regular day centre model where attendees playing bingo with prizes no doubt also derive an equally increased sense of well-being. Somehow care has to be sanitised, in a variety of ways, to be acceptable to the statutory funders. I will call this the “Dettol” effect and comment on this another time. This is not to say one is better than the other; they are simply different in their approaches.
I am wrapping this up now but wish to summarise by provoking further thought. Derbyshire is currently undergoing a sweeping consultation about the future funding and provision of NHS and Social Services Care towards older people. This is a highly emotive concern for many rural residents who have genuine concerns about the logistics and thinly spreading provision across a large geographical area to a disproportionately high population of older people. Pushing aside the politics and immediate gains for individual councils and NHS Trusts perhaps this is an opportunity to really consider the variety of services which are required in the community to enhance well-being. The often small localised providers are all striving to meet the needs of specific groups of people in diverse ways. Let’s consider the benefits of smelling the shit alongside the planting of roses in old age. They are interdependent and all form a part of rural life which has to be celebrated and sustained.