#Dementiaville - what do people living with Dementia think about their care?

10th Jun 2015

#Dementiaville’s respectful approach is welcome and significant, but the voices of people living with dementia have yet to be heard, says Katherine Blaker.

In the run-up to the first episode of Dementiaville, I was hoping for a documentary that was respectful, enhanced people’s dignity and gave voice to those living with dementia. The show was undoubtedly great telly – offering a view of a world beyond the gaze of most of us. It was bright, fun and the narrative about the Butterfly model of care was liberally interspersed with poignant moments shared by staff and families of residents. The warmth of the relationships between residents, staff and families shone out of the screen. Social media during the show was full of praise for the dedicated, energetic and imaginative staff.

It was refreshing to see on mainstream TV a care setting that was compassionate and respectful in its approach. Not seeking to shock the audience, condemn or expose staff or vilify families for their decision-making. Staff members working with residents were shown respectfully as reflective and insightful individuals doing a job that was recognised for its complexity and daily challenges. Families were portrayed grappling with difficult decisions and shifting relationships, seeking to ensure their relatives’ life histories were recognised in their care and their happiness and well-being remained the focus of everyone’s attention.

What Dementiaville has not achieved so far, is an insight into the perspective of the individuals living with dementia themselves. I firmly believe that each of the residents will have their own perspectives on the innovative care they are receiving and I would love to know what they are.

Seeking the views of people with dementia can seem challenging, but if we are to create a world that recognises and respects the contributions of people living with dementia, we have to take responsibility and listen to their views. As one example, in the last two years I have been privileged to work with individuals living with dementia who have offered advice on applications for JRF's community grants programme. This work taught me that knowledgeable, trusting relationships built over time, and attention to detail can enable people who may not usually be very vocal to express their opinions.

I look forward with anticipation to the two further episodes, and hope we will hear more from people living with dementia.