Dementia Festival: A beautiful oxymoron!

This article has been cited in Luxmoore et al. (2018) Evaluation of the Good Life Festival: a model for co-produced dementia events, Mental Health Practice 21, 6,26-31. 

On Saturday 12th March 2016, I went to the ‘Good Life Festival’ co-produced by Social adVentures, Alzheimers Society and the Salford Institute for Dementia. This was a one-day festival for people affected by dementia, their families and carers. The idea behind the festival was to allow people who had recently been diagnosed with dementia to come along and meet people in similar circumstances in order to find out more about how to continue to live a ‘Good Life’ whilst facing the challenges that come with a diagnosis of dementia.

When I first heard about the ‘Good Life Festival’ or ‘Dementia Festival’, I was uneasy about the words ‘Dementia’ and ‘Festival’ appearing next to each other. Surely this was some sort of oxymoron? Isn’t it a bit insensitive of Salford University to celebrate such a destructive condition? What I can now say, having attended the festival, is that my opinion on that has completely changed.

Dementia is a set of symptoms that might include memory loss and difficulties with problem-solving, language and/or thinking. It is caused when the brain is damaged by diseases, such as Alzheimer’s disease, Creutzfeldt-Jakob disease (CJD) or a series of strokes. There are several different types of dementia which include Alzheimer’s disease (the most common cause of dementia); vascular dementia (caused by a reduced blood supply to the brain e.g. following a stroke); and rarer causes of dementia.

Something thing that all types of dementia have in common is that they are progressive. This means that the structure and chemistry of the brain becomes progressively more damaged as time goes on. For people with dementia, this means that as time goes on, they have a reduced ability to remember, understand and communicate. How quickly dementia progresses depends on the individual, as each person is unique and experiences their own journey with dementia.

I arrived at the festival early on Saturday morning, took my seat, and the first thing that I noticed was the audience. The majority of people were elderly, and this obviously makes sense as dementia mainly affects people over the age of 65 (1 in 14 people over the age of 65 will have dementia). However, dementia also affects younger people (in early-onset dementia, younger people are described as being under the age of 65), and in the UK there are estimated to be around 40,000 younger people living with dementia. Having such an older audience for a festival was the first thing in the day that challenged my views on what the term ‘festival’ means.

The festival featured many different initiatives from Salford and beyond that have been set up by and for people affected by dementia, including friendship groups, singing, dancing, art, sport, gardening and holidays. People were given choices in what session to attend in the morning and afternoon. I attended the nature/gardening session in the morning. I made seed-bombs and learned about the benefits of nature-themed activities for people living with dementia, their carers and families, and heard about wonderful nature initiatives in the local area for people affected by dementia. In the afternoon, I attended a dementia-friendly tour of the Salford Museum and Art Gallery and I saw how the museum artefacts brought back memories for the people on the tour with me and sparked discussions on the happy memories of Salford’s “olden days”.

For me, the part of the day I enjoyed the most was hearing from Tony Husband, a professional cartoonist, who talked us through his book “Take care, Son” which is a heartfelt story about his Dad’s journey with dementia. The title of the book was inspired by the last words Tony’s Dad, Ron, had said to him. In the book, Tony tells the story of his Dad’s diagnosis, his journey and the challenges of living with dementia until Ron’s death. I could see that I wasn’t the only person sitting there quietly with a lump in their throat and tears in their eyes as we listened to Tony tell us his Dad’s story. Many people in the room could relate to what Tony was saying, especially the adult children who are caring for their parent with dementia. Tony finished his talk on an uplifting note by doing cartoon drawings at the request of the guests at the festival who could then take the drawings home with them.

The festival was probably the most organised and well-thought-out festival event I have ever been to (as a festivals researcher, I’ve been to countless festival events), and this is to the credit of the organisers. They knew their audience well and they planned the festival around the needs of the audience. It was an entirely dementia-friendly festival. This was evident in many ways. For example, there were ample opportunities for tea and cake throughout the day and there was a dedicated quiet room for people to go to if they felt they just needed a bit of space or a quiet moment, away from the large group. There were sign-posts everywhere, so if you forgot what room you were supposed to be in, the signs would help. The ‘Dementia Champions’, volunteers and staff were identifiable with yellow sashes and took time to mingle with the audience, listen to their stories, sharing experiences, and went out of their way to make everyone feel welcome, but more importantly made people aware that others were going through the same challenges and that they were not alone in their journey.

As the festival drew to a close, everyone gathered back in the main room for a sing-a-long. We sang along to ‘When you’re smiling’, ‘Amarillo’ and ‘Dancing Queen’. By the time ‘Dancing Queen’ had come on, many people were up at the front of the hall dancing, so I thought I’d join in. I asked the lady I was beside if I could have the honour of having a dance, and she kindly obliged. Whilst we were dancing she told me that she loves dancing and that although dementia might take your mind, you always have your heart and soul which is set free with music and dancing. She told me that when you hear music, you begin to remember things: you remember where you were when you first heard the song, and when you last danced to it. The lady made it so clear that music and dancing is an important part of not only coping with dementia, but of life in general.

As I was leaving the festival, a lady with dementia said “I didn’t think it would be like this” and I completely agreed with her. “Dementia” and “Festival” aren’t usually two words that are put together. It was only by attending the festival that I understood. The festival was a celebration of life, not of dementia. A dementia diagnosis isn’t the end, in fact it’s only the beginning of a new journey in life. The festival helped me see that and it helped people living with dementia celebrate life, and informed them of new ways to celebrate life through art, music, nature, dancing, singing, sport, friendship groups and holidays and informed people of local initiatives and groups they could get involved with.

I think there are some lessons to be learned from the Dementia Festival for other festivals (including science festivals), and for life in general. The key messages I learned at the dementia festival are:

• Festivals need to do more to cater for older adults. There was as much zest for life at the Dementia Festival is there is at Glastonbury or T-in-the-Park;
• We need to think of the audience when planning any festival event. What are their needs and how can we cater for them to make them more comfortable?;
• Festivals need to think about how they cater for people with additional support needs;
• Life is for living – enjoy life whilst you still can; and finally
• If your festival event doesn’t finish with a sing-a-long and the audience all up dancing, have a re-think about how you interpret the word 'festival'!