- Oct 6 2016
You recently partnered with the Sodexo Institute for Quality of Life to convene and co-host a round-table on memory care, quality of life and the progress of people living with dementia, their relatives and carers. What attracted you to this?
Jim Kinsey: The topic greatly appealed to me on a personal level. My grandfather lived with Alzheimer’s disease from the time I was in my late teens to my early twenties. My grandmother cared for him at home and we all helped as a family, so I was able to experience a care giving role from an early age. This was the mid-1980s, when the term “Alzheimer’s” was quite new and little was known about the condition initially known as “Organic Brain Syndrome”. At the time, I was also working at a care centre. My personal experience greatly inspired my work, especially in terms of humanising the relationships with people living with Alzheimer’s disease. This started the whole journey for me and, throughout my career, I have always tried to focus on what a person needs and wants. This really attracted me to work for Planetree.
The opportunity to partner with Sodexo for the Dialogue really was a culmination of years of work. Many of the experts around the table were either people I personally knew or whose work I had heard about and appreciated. It was therefore a unique opportunity to be able to hold a really robust discussion about what quality of life for people living with dementia actually looks like.
Thinking about the round-table itself, what struck you?
J.K.: What really struck me most looking around the table was the diversity of individuals, each with their own special skill set and expertise, brought together to find a common ground. For example, we managed to overcome initial challenges surrounding the word ‘dementia’ itself by agreeing to use person-first language and focusing on what truly matters for people living with dementia: quality of life, today and tomorrow. To be a part of this exchange of ideas with such a variety of experts really was an incredible experience.
What were the main challenges identified through the round-table discussions?
J.K.: One of the main challenges that we agreed on is the assumption that people living with dementia should have the same outcomes as people living without dementia when engaging in different types of activities. For instance, if we assume that someone can no longer read and we think that we are preserving them and their dignity by not giving them access to books, then we are ignoring the fact that reading is much more than just understanding words on a page. Reading is about a whole process: holding the book (upside down or right side up), turning the pages, feeling the texture of the book, its weight in our hands, even smelling it. If we only focus on assuming that people living with dementia cannot read words and therefore cannot be interested in books, then we are depriving them of an experience that directly affects their personhood.
Which priority for action and change stood out most for you?
J.K.: The main priority for action and change that stood out most for me was around the use of the word “community”; the quality of life of people living with dementia, their relatives and carers really comes down to that. In my grandparents’ case for instance, the support they received from their community was crucial to their individual wellbeing. At Planetree, we try very hard with our members to think of their organization as a community. At the Dialogue, this brought me to think about what might prevent community: for example stigmatization of others that are unlike us within the community. We need to decrease the stigma of living with dementia and aging. Building a strong community requires an understanding of the potential barriers and the first barrier that we often encounter is: “they can’t do that”. Our first job is then to break down that stigma.
It’s often very challenging for many workers to offer personalised care because they are held to a process that’s outside of their own control. I think technology can help with this and it should therefore also be a priority.
I have seen some extraordinary results with good examples of technology such as Music & Memory which was also represented at our Dialogue. I believe technology is a vital resource even though it cannot replace human connections, it should enhance the human experience.
What was the single point that stood out the most for you?
J.K.: I really understood what a Dialogue participant with early-onset Alzheimer’s disease meant when he said: “Treat me like a person, because that is what I still am”. Our work here is about recognising and honouring individuals personhood; it’s a mechanism for improving quality of life. In order to honour their voice despite the stigma - “they’re not able to make decisions” - we need to get better at understanding who the person is before they had dementia and understand their value system through contact with their family and friends. The fascinating thing for me is that it doesn’t take much time if you’re intentional about making that connection. We need to ask ourselves how we use the information that patients often give us through their personal stories. If we do this, we can understand them better and construct a quality of life-enhancing plan of person-centred care and engagement.
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