My experiences about dementia and carehomes
Like so many of us, I have personal experience of watching the decline and eventual demise of a close family member. In March 2017, my father lost his six or seven year battle with PSP, a relatively rare form of dementia whose common symptoms are essentially the pernicious destruction of a person’s most basic motor-skills; balance, speech, swallowing and facial expression. This all happens while the patient retains largely fully functioning processes of thought, memory and reasoning. I watched my father become essentially locked in his body.
Through our various visits to hospitals and care homes it became increasingly clear to me that that there was a fundamental lack of knowledge and understanding of my father’s condition from health care professionals and carers. It seemed that even senior doctors in hospitals had not heard of PSP. This led to countless avoidable falls, some of the worst of which occurred in A&E wards.
Following a series of failed attempts to get him settled in nursing homes that were ill-equipped to cope with his needs profile, we were delighted when we did finally manage to find a place in a wonderful care home for my father in August 2016. During his few months, he was extremely well cared for by the excellent staff at the home who had either had previous experience of residents with PSP or who had almost an innate understanding of his needs, ensuring that his final few months were as comfortable and safe as they could be.
Northern Chamber Orchestra and MMU collaboration
Shortly after he was admitted into the new care home, I took over as General Manager of the Northern Chamber Orchestra and was determined to put work with dementia patients at the heart of what our musicians were doing, putting it on at least an equal footing with education work. In partnership with the Faculty of Health at MMU and through the generous sponsorship of Porthaven Care Homes, we had the opportunity to do a series of six informal concerts at the care home in which I had played many times to my father.
I was delighted to be able to give something back to the home, and to see if with the help of Professor Josie Tetley’s team, most importantly Emma Koivunen, the lead researcher on the project, we could make some progress with beginning to understand what all musicians know anecdotally, which is why music has such a profound effect on dementia patients. I had seen first-hand many examples of therapeutic benefit to residents, not to mention the obvious enjoyment that was brought into their lives. There was an obvious social benefit too, as carers, residents and family members were all united as audience- previously clearly defined roles were temporarily suspended. And I was going to be interested to see whether there might be a possible clinical dimension to explore. I have always wondered how music can reignite neural pathways that have seemed to have atrophied. Could clinicians learn something from this? Might more research in this area aid in the cure or at least alleviation of symptoms through drugs or other therapies?
We were very fortunate when we started the project to have the support of the Health Faculty, in particular Emma as I have said and Bakhtawar, an intern who was able to assist in the setting up of the project and crucially in the evaluation and collating of data.
Concerts in the carehome
The whole project, delivered over three days was a wonderful experience. We saw many residents and staff form the home clearly benefit a great deal from the experience and I am sure that some very positive outcomes will be attributable to our intervention. From our point of view, as musicians, we found the process stimulating, moving and often very amusing. Following one of the informal concerts, I was asked if I would mind going down the corridor to play to someone that had been unable to get out of bed to come and hear us. I believe he had Parkinson’s. I got to his room and played for 10 or 15 minutes and he was over the moon. So much so that the following morning I returned with two other musicians and we gave him his own, private concert. This was one of the most moving and meaningful performances I have ever given because it struck me that attending cultural events is something that most of us take completely for granted and regard it as a basic right. Just because he was bed-ridden, why should this clearly very culturally aware man be denied this right, just because he is old and infirm?
The whole experience felt very significant and I am busy working on other ways in which we can roll out the project to other care homes, to other regions. My thanks go to Bakhtawar, Josie Tetley and of course to Emma Koivunen for bringing this whole project to fruition.
General Manager, Northern Chamber Orchestra
13 September, 2017