Dealing with Dementia at The Bath Festival

One of the most profound experiences to come out of The Bath Festival is to attend an event that explores what it is that makes us human, and what connects us. The bringing together of three remarkable women for this year’s festival was a great example of this.

The topic was Dealing with Dementia – timely as Dementia Action Week runs from 20 to 26 May – and some might have stayed away for fear of being disturbed or depressed. But those who attended left the Assembly Rooms uplifted, moved and inspired. The three speakers have all been touched by dementia in different ways. Steph Booth was the wife of a man – actor Tony Booth – who developed dementia, Nicci Gerrard is a journalist whose father had dementia and Wendy Mitchell, who is still in her early 60s, has written a book about her own experience of living with dementia.

Wendy told her audience how she learned of her diagnosis, aged 58. “I had so much life still to be lived when I was given my diagnosis. The doctor told me ‘there is nothing more we can do’ but I thought to myself, ‘but there is much more that I can do.’” She said she would have taken her diagnosis better if the medical profession was more inclined to tell patients that they were about to lead a different life and not simply that there was nothing more that could be done.

Wendy lives alone, which she sees as a positive thing as she’s not annoying anyone else, but she has two supportive daughters who visit. She shared some of the practical tips she had benefited from, such as putting a pair of tiles decorated with forget-me-nots beside her front door so she’d know it was her home and not go to her neighbours by mistake. She also said she finds typing easier than making phone calls and urged other people to harness technology to help them.

Wendy spoke with empathy and humour about her situation. She keeps busy, attending talks such as this one, which she sees as like sudoku in keeping her brain exercised. But she admitted to finding the travelling, strange hotels and remembering what to say to audiences, very tiring.” But I would rather die of exhaustion than dementia,” she said, to laughter from the audience.

Around 850,000 people in the UK are living with a diagnosis of dementia and it’s estimated that as many people are living with the condition unaware or simply undiagnosed, so most of us come into contact with the condition either through our families or in our communities.

The panel discussed how to cope with inappropriate or violent behaviour that can manifest itself. Steph Booth said: “If people are worried about how someone with dementia might behave in a social situation, then that’s their problem.” She appointed her husband, actor Tony Booth, as her consort when she was made mayor and when he became aggressive and violent at home  she coped by removing herself into the garden, where sub-consciously he realised this was her safe place.

She also spoke movingly about how, in the later stages of his disease, she began to realise that she had withdrawn physical affection from her husband. “I started to put my arms around him again, to tell him I loved him. Love is very powerful. We can still reach a part of them with love. This man was still my husband.”

Nicci, who sits on the national audit for dementia, said there needed to be more support for people, so they didn’t disappear and become invisible. “It’s important that we talk to them, not about them, that we do things with them rather than for them.” She emphasised the therapeutic powers of music, of art and of gardens and nature and pointed out “the track of life is that we will all become vulnerable.”

An audience member asked what we could do to help people living with dementia and Wendy answered: “Be more aware, be kind, be patient with the person fumbling with their money on the bus. Smile. A smile costs nothing but it means so much to the person you’re smiling at.”

The three books are: Somebody That I Used to Know by Wendy Mitchell, Married to Alzheimer’s by Steph Booth and What Dementia Teaches Us About Love by Nicci Gerrard.