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I met Chris and Jayne at a meeting of researchers in Maastricht recently. They were representing the European Association of People with Dementia, of which Chris is vice-chair. Along with a Norwegian couple, they were advising the network on involving people with dementia in research and product development.

Chris, Jayne and their family of five adult children allowed Panorama to make a documentary about living with dementia, with cameras installed in their home for one year. The material led to the frank programme screened last June and which can be viewed here:

http://www.bbc.co.uk/iplayer/episode/b07dxmyh/panorama-living-with-dementia-chriss-story

It is inspiring to hear first-hand from someone living with dementia. Chris articulates his feelings and his opinions very well. Diagnosed at 50, with vascular dementia and early-onset Alzheimer’s, Chris chose a care home soon after the problem was recognised. At one point in the programme, he surprised his wife by saying he preferred to stay in the care home. The reason: he has no responsibilities there. He feels normal.

We researchers find it hard to define wellbeing, but feeling normal may be a good outcome to aim for in dementia. It’s a way of erasing the power differential between those with a diagnosis and those without. It may indicate a sense of inclusion, acceptance, contentment.

Watching the documentary, I was humbled to see the day to day problems that Chris and Jayne had to overcome in the course of a year, as the effects of the dementia grew. One thing that Chris ‘forgot’, to Jayne’s relief, was his wish to go into care sometime soon. A world away, chatting with them over dinner in a Maastricht restaurant, I enjoyed a very normal conversation; about families, about holidays and about the impending snowstorm. 

What I learnt from the Panorama programme was that the disabling effects of Chris’s dementia fluctuate quite a lot. At one point he was shown being taken to hospital with the effects of a stroke. These effects were imperceptible to me when we met. I’d been working with a mental model of dementia that leads to relentless decline and increasing dependency. After watching the programme and meeting Chris who spoke eloquently and with humour about his experience, I had to revise my assumptions. With planning, support from family and (I suspect) good medical management, Chris enjoys periods of normality like the ones I shared with him and Jayne. Their common sense approach to life and their refusal to hide from the reality of dementia are inspiring. Thumbs up for making courage and candour normal in dementia. 

Picture of Chris and Jayne courtesy of BBC.