An outstanding example of hospital care for patients with dementiaBMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2513 (Published 19 April 2013) Cite this as: BMJ 2013;346:f2513
- Kate Sartain, carer, Southwell, Nottinghamshire
“Old people are too often treated with contempt and exasperation … too often we want older citizens to accept a marginal and humiliating status, tolerated but not valued, while we look impatiently … for them to be off our hands,” said Rowan Williams, former archbishop of Canterbury, in his last speech to the House of Lords in December 2012.
In September 2011 it became obvious that Dad was developing dementia. Mum had died six months before. Her dementia was diagnosed in 2006, after years of us not quite realising what we were dealing with. The second time round it was easier to detect.
During the years when Dad cared for Mum, the government produced the national strategy Living Well with Dementia. Local strategic health authorities ran workshops where medical professionals, social workers, commissioners, and providers met with service users and carers to determine how best to deliver care for people with dementia. People were encouraged to tell their stories of living with dementia. I attended as a carer.
A picture emerged that caring for people with dementia is a highly skilled job in desperately short supply. One consultant commented that “living well” was impossible. Through tears, elderly carers spoke in desperation about isolation and exhaustion coping with a spouse whose character changed from minute to minute. A woman with dementia shared fears of losing her capacity and identity.
People with dementia find change particularly challenging, so stories of deterioration in physical health and hospital admissions were heartbreaking. It was therefore with trepidation that I accompanied my very confused father to hospital one day after he had fallen. In the emergency department he was treated efficiently, and after 24 hours in an admissions unit he was moved to a ward.
What a relief. This ward had a striking sense of order, peace, and calm professionalism. A large sign gave the day and date and described the weather. By each bed stood a glass-fronted cabinet where visitors could securely place personal effects, reminding patients of something familiar, these things gave a sense of security. A nurse approached me, gently explaining that Dad had dementia and a problem with his blood pressure. She explained the treatment for the physical illness but also wanted to understand who my dad was; what he liked and disliked; and what I knew about dementia. Did I realise what this really meant for him in the long term? I was amazed that a busy ward sister had the time and patience to deal not only with her patients but also to assess their carers. In talking to people who are involved with dementia care, the two words that are voiced most are “time” and “patience,” and these are in short supply. For the first time for many months, I was able to relax. Dad was being treated by people who understood the problems. I even dared to consider that perhaps the outcomes of the workshops were being put into practice.
During his three week admission, Dad was treated as a whole person. The staff treated him medically but also with compassion and respect as a human being. And they did the same for my sister and me. They had time to treat the family unit, not just a confused man with wobbly blood pressure to tick a box. When he was discharged into a care home, Dad was at ease. It had been wonderful.
We didn’t realise the true value of this experience until weeks later, however. After another fall, Dad was admitted to a different, non-specialist ward in the same hospital. Here, we were struck by the reality of staff trying desperately to deliver good care but in an atmosphere so fraught it was exhausting. I wrote to the hospital asking why these two experiences were so different. The chief executive explained that the first ward was funded by research to investigate ways of treating people with both physical and mental health problems.
This first, specialist ward had found ways to understand and put into place care that benefits patients, staff, and carers. Maybe it was the provision of an activities room, a place of stimulation, where patients are offered a variety of recreations. I was comforted by the time and space I was given to find a “new home” for Dad, and the discharge direct from the ward to the new home with Dad accompanied by a face he had become accustomed to eased that change enormously. Whatever, throughout Dad’s stay, staff offered “that something,” which all the workshop storytellers were seeking for their loved ones, and for themselves. This “something” is intangible, possibly unmeasurable, but is immeasurable.
Dad did fall again, his health deteriorated, and, at 92 years old, he had multiple physical problems. The time he spent on the specialist ward was an excellent experience during which we were able to calm down and come to terms with what the future meant, and we were prepared for what we all knew would be a gradual decline. Patients with dementia are not going to “get better,” but they can be enabled to be ill with dignity. The research ward made huge progress in defining how to deliver excellent care. Carers became part of the whole package. Hospital staff can deliver patient centred care and leave their shifts fulfilled and satisfied.
If we are to develop good practice so that patients can live well with dementia, experiences such as ours must be celebrated and disseminated, sooner rather than later. We learnt that care of ill older people with dementia is difficult, time consuming, and skilled. But it is not impossible. Hospital care can be inspiring.
Cite this as: BMJ 2013;346:f2513
I thank Margaret Kerr, my sister.
Competing interests: I have read and understood the BMJ Group policy on declaration of interests and have no relevant interests to declare.
Since writing this article, I have become a volunteer in dementia care, University of Nottingham Public and Patient Involvement Group, Medical School, Queen’s Medical Centre Nottingham, Nottingham NG7 2UH.
Provenance and peer review: Not commissioned; not externally peer reviewed.