When I was first learning about better services for older people with mental health problems, including dementia, something took me to come across a chapter in a book in the library at Sale. It included figure which was an interpretation of the universe as understood those many years ago when the Babylonian Empire ruled the known world. It featured the Cosmos centred on Homeland around which were hostile ‘briney waters’, beyond which was the unknown wilderness. Within the hostile waters there were a number of islands – safe places.
It struck me that this was a good model for our services – home for almost everyone is felt to be the preferred safe place. Quite where and when is home may be a more complex concept than at first sight. ‘Elsewhere’ is potentially less safe – verging toward hazardous and threatening, especially if you are not well equipped or have become unwell or disabled. Perhaps our hospitals and care homes can be conceived as these islands of safety, with day care or outpatient clinics as beaches. I still have the hand-drawn slide for an overhead projector that we used for many years in exploring this with students and others.
This week I heard presentations based on studies from the perspectives of people working as chaplains within care homes. The first reflected on observations from the experience of seeking to appreciate and support the spiritual dimensions of individuals with dementia – as individuals and as a group. The essence of success and usefulness lay in attitudes of quiet awareness, flexibility, sensitivity, respect for the other person(s), and attentive listening. There is such temptation to fail to acknowledge and recognise the historical and present strengths and abilities of someone living with dementia and in a cared-for situation. To change interactions so that they foster active involvement rather than be a performance takes time and humility and preparation. Recognition of the uniqueness of individuals, but helping them to share with others, can produce a sense of healing and community within an assembly of souls who have come together out of similar needs. Care staff, visiting family and friends contribute clues and context.
A second study, drawing on interviews with residents who did not have dementia, used the reflections of sixteen interviewees to explore their personal worlds in care. We heard of the circles of reality from that closest, and radiating out to the wider world. Very like my Babylonian map of the Cosmos. How difficult it is to build a new sense of home and community, even in the presence of preserved cognition. Time here is brief – for each resident life expectation averages less than two years during which there are likely to be episodes of illness, perhaps hospitalisations, perhaps transfer to other safe places, perhaps progressive or stepwise loss of ability. And the context of ‘people-like-me’ (other residents) will be subject to change as new residents and their families arrive, others become unwell and mysteriously disappear – They have died or gone elsewhere. Staff too are often subject to turnover, though this varies with locality and the organisation. Placements are often away from the community where an individual had previously lived – dictated by convenience for others, prices, or simply the availability of a bed at the time. This reduces the potential for joy from local accents, shared stories of lives around a village, rural or urban, its schools, shops, parks and such.
Building community and reaching souls in this context is demanding indeed. The model which Peter Townsend gave us, which restricts the use of care homes to only those who are most severely impaired, combined with the economics of a competitive market, has left us with Homes which are islands with no beaches. Shame.