Last reviewed 15 June 2015
How do homes help those with dementia approach the last phase of life? Jef Smith visits a residential home specialising in provision for a range mental health conditions.
Death and dementia — no two words so succinctly encapsulate our age’s most feared subjects, and with good reason. Fear of death is certainly not new and needs no explanation. Fear of dementia, however, is a uniquely modern phenomenon since increased longevity exponentially multiplies the numbers of those at risk.
But how do those whose cognitive capacities are ravaged by dementia or other long term mental disorders experience the imminence of death? This truly terrifying question prompts in the rest of us only anxious guesses, and for no group are these concerns more pressing than for the staff of organisations providing social care, particularly for those working in residential care and nursing homes.
Whether or not a home claims to specialise in dementia services, it is likely that a substantial proportion of its users as they approach the last phase of life will do so with a diagnosis of dementia. Even if dementia is not identified as an older person’s cause of death, it may still cast a heavy shadow over their last days. Just how do homes cope with this literally dreadful responsibility?
Seeking answers to this question I recently spent half a day at Sherdley Court, a residential home for 25 residents specialising in provision for a range mental health conditions. A single-storied building, with accommodation grouped into three almost family-sized units. Sherdley Court merges inconspicuously into a residential area on the edge of St Helens in Lancashire, only its notably well-kept garden setting it above its neighbours. The latest inspection report from the Care Quality Commission (CQC) praised Sherdley Court and its manager Hayley Rowson de Vares highly, but ironically it made no mention of end-of-life care, the element in its services for which it had been particularly recommended to me.
The home is part of Making Space, a not-for-profit organisation operating a range of metal health services across Lancashire. Only a quarter of Sherdley Court’s residents have dementia, but other mental disorders also tend to shorten life, so dying is by no means an exceptional experience here. The fact that there is a wider age range than in most homes for older people certainly makes for a more balanced community. Though the group has its share of disabilities, many residents are physically active, and some even double as recognised volunteers helping out with caring for their colleagues.
It soon became apparent in conversations I had at Sherdley Court that I was the only one holding back from using words like death and dying. For others, the end of life was a topic they faced, not without emotion, but with an impressive frankness. Before my visit, I had seen an article that one seriously ill resident had written for Making Space’s house journal, in which she described the preparations she made for her death with the help of staff at the home, frankly accepting that “I don’t know how long I have to live”.
I talked with her as we sat on a garden bench inscribed to the memory of a friend of hers, a fellow resident who had died a few year ago. As we ate our lunchtime sandwiches together, we looked out on the “Memorial Tree” to which are pinned little metal tokens with the names of residents who have died over recent years. Relatives often visit the spot on the anniversary of a loved one’s death, and it shows current residents, as Hayley put it, “that they too will be remembered”.
Earlier in the morning, I had had conversations with two relatives who had come to visit their very poorly loved ones. They both spoke movingly of the sometimes troubled history of their families and of their feelings of guilt and inadequacy about not being able to provide full time care themselves, but their ability to discuss dying with relative ease clearly derives from the openness with which the issue is always treated within the Sherdley Court community.
Gold Standard Framework
The home uses the Gold Standard Framework (GSF), a system of staff training and accreditation operating across health and social care, with a specialised programme of workshops, distance learning and other teaching and good practice aids focused on residential care and nursing homes. Since its inception in 2000, GSF has worked with the staff of 2300 homes, claiming to have significantly reduced the number of residents dying in hospital, a good measure of the confidence of homes to provide quality palliative care.
Although it is not officially endorsed by the CQC, local authorities are increasingly taking a home’s GSF accreditation into account when making decisions about placing vulnerable people. I am not sure what the word “gold” in the scheme’s title was intended for this purpose, but the initials are now said to stand for Good communication, Ongoing assessment of needs, Living life to the full, and Dying with dignity — a pretty fair summary of GSF’s objectives.
Sherdley Court’s success in end-of-life care has certainly been enhanced by GSF, but it has added a good deal of its own theory and practice in achieving such a high quality service. Its locally produced leaflet, Coping with Dying, offers valuable information and words of comfort for both residents and their relatives.
Its opening sentence is: “You may find it easier to support each other if you know what may happen during this sad and challenging time.” It also includes practical advice on, for example, the diminished need for food and drink, and changes in breathing and temperature in someone who is dying, and a well-expressed final section on “Withdrawal from the World”. A similarly sensitive leaflet on bereavement is available to help families after a loved one’s death.
The home also has access to various aids derived from other sources. Among these is a form called Preferred Priorities for Care (PCC), originally prepared 10 years ago by the Lancashire and South Cumbria Cancer Network, subsequently substantially revised, and now endorsed by the NHS End of Life Care programme. This invites anyone facing death — all of us? — to confront questions the answers to which define our preferences and priorities. (Not for the first time with a health service document, I found the Easy read version, with its straightforward language and neat graphics, much more accessible.)
Encouraging people to make their own plans for what should happen when they are dying and after their death is central to Sherdley Court’s purpose. We need, says Hayley, “to get death into everyday language”.
I asked whether some residents or indeed their relatives find the concept of advanced care planning difficult to accept, to which Hayley responded that “when they first come in it can be a bit of a 'Whoa', so we introduce the topic slowly and gently”. The materials are always readily available, people naturally observe others deteriorating in health, and new residents gradually lose their fear as they pick up the ease with which topic is addressed.
In the last resort, however, it is the quality of the staff in any home which makes the largest contribution to the service they can provide. Sherdley Court’s staff draw admiration from both residents and relatives for their years and maturity, the average age is over 50, which contrasts sharply with the keen but transient twenty-somethings I encounter in many homes in and around London. The low turnover in support workers — the home’s preferred term for care assistants — owes something to Lancashire’s labour market but also a great deal to the sense of commitment and community the home generates.
An effective key worker system adds to the strength of staff–resident relationships and underpins the care planning arrangements which are central to preparing for dying. Key working in turn is aided by the home’s internal structure of three units, each with its own staff group supervised by an assistant manager. Many, much larger homes, claim to counter their size of being broken into units, but often these are each as large as the whole of Sherdley Court. My only criticism here is that the units have confusingly similar names — Holly, Hazel, and Heather — but this was decided long ago and it would obviously be disruptive to change it now.
It goes without saying, though this is a claim relatively few care homes can make, that all front-line staff have at least NVQ level 3 or 4, and these qualifications are supplemented by an active in-service training programme of which GSF forms an important part. By contrast, there are no qualified nurses on the staff, residents’ needs on that front being more than adequately met by visiting community nurses. If such an arrangement works well, who needs nursing homes?
One of Hayley’s favourite lines — I heard her using it at the King’s Fund Conference where we first met and she repeated it during my visit — is: “talking about death doesn’t make death any closer, any more than talking about pregnancy gets you pregnant”. What makes such openness work, however, is an over-branching sensitivity, married to courageous and imaginative ways of working.
Animals — residents’ pets are very welcome — also play their part in this process. Jacqueline, the much-loved house cat, came to the home with a resident but by common consent stayed on when her owner died. At a residents’ meeting discussing advanced care planning, the conversation turned to what Jacqueline needs — to be cuddled, to be fed, to be kept warm, not to be fussed over by strangers, pretty similar to what most of us want in fact.
Gradually, the topic shifted to the possibility of Jacqueline’s losing the capacity to take decisions for herself, and it was clear that for many residents working through a cat’s needs provided a gentle introduction to thinking seriously about what they would want for themselves as death approached. It is a clever tactic, which could be used elsewhere. Personally, I found it slightly reassuring that even in as candid an environment as Sherdley Court, it sometimes pays to approach dying matters just a little indirectly.