A dementia diagnosis is devastating for anyone - but a North Yorkshire choir is showing illness does not need to call the tune when it comes to still enjoying life. Chris Burn reports.
“When I was diagnosed, I thought negatively that this was something that was going to seriously affect my life and my life was almost over. It has turned out that it has enhanced my life, with the contact with this group in particular. My wife and I have made new friends - it is a real blessing.”
Like many people given a dementia diagnosis, Bob Jones felt a sense of despair at the future he was facing. But the former teacher from Knaresborough has actually found living with the condition has provided the opportunity for a surprising new lease of life despite the short-term memory loss he has to deal with.
Bob, aged 80, is a regular attender of the Singing for the Brain choir group that meets each Monday afternoon at Christ Church in Harrogate.
Organised by the North Yorkshire branch of the Alzheimer’s Society, the group is open to people living with dementia, carers and people concerned about memory loss.
The charity arranges such singing groups across the country, welcoming people of all abilities and based on the principle that music remains easy to recall even for those who have reached the stage where many other memories are hard to retrieve.
The North Yorkshire group belt out old favourites like Land of Hope and Glory and She’ll Be Coming Round the Mountain, taking regular breaks for tea and cakes during the 90-minute sessions in the church hall.
Now their example and positive attitude to life is helping to shape a new dementia strategy for North Yorkshire - named ‘Bring Me Sunshine’ after another one of the songs they sing together.
Bob is a member of the group with his wife Sandra and the pair say it is one of the highlights of each week. The 80-year-old, who used to teach physically-handicapped and emotionally-disturbed children, says it has been a pleasure to rediscover the joy of singing and make new acquaintances along the way.
“At the time I had just been diagnosed. I thought there was a black cloud ahead but in fact the quality of life has improved through meeting new friends, going to new meetings and having something to look forward to.
“As a lad I was in the Carl Rosa Opera Company and then my voice broke and I didn’t do much singing after that. Coming here I find a lot of joy in it.”
Bob says it is something he would encourage others diagnosed with dementia and fearing the future to attend. “I would recommend it without reservation for many reasons. It is looking forward to something and meeting together and it is actually quite emotional.”
His wife Sandra adds: “We are like a family. Everybody feels close together. We have made more friends since Bob was diagnosed than we had before.”
Fellow choir member Kathy Howard, aged 64 and also from Knaresborough, is another happy to sing the praises of the group. Kathy, a former shorthand typist and book-keeper who has been diagnosed with dementia, says she attends three singing groups because she takes so much pleasure from them.
“It cheers me up, just watching people be happy. It keeps me going and I just like being with people.”
Alison Wrigglesworth is service manager for the Alzheimer’s Society covering the Ripon, Harrogate, York and Selby areas. The local Singing for the Brain group has been running for around six years in Yorkshire and has around 20 members.
While Alison says the group is chiefly designed to be a social experience, they did recently perform at the Harrogate Music Festival to the approval of the audience.
She says the group has an important role in the lives of many of its members. “Social interaction for many elderly people is a problem, even without dementia. Once people get a diagnosis, they tend to withdraw from society and from their friends and family. With this choir, they can come to a group where they are understood and supported by other people with that condition. When you get that peer support, you realise you are not on your own.”
The choir was involved in drawing up the North Yorkshire dementia strategy and even helped come up with its name ‘Bring Me Sunshine’ when a conference discussing what it should include was held at The Pavilions in Harrogate last year.
The name is designed to symbolise the face that although living with dementia brings many challenges, it does not have to stop people enjoying life. A consultation is currently under way on a combined dementia strategy involving the local council, NHS, charities and voluntary organisation with a focus on making life better for both those with the condition and their carers.
More than 10,000 people across North Yorkshire are believed to be living with dementia - but almost half haven’t been formally diagnosed.
Richard Webb, corporate director for health and adult services at North Yorkshire County Council, says the consultation on the dementia strategy for the next five years represents a “golden opportunity” to reshape services.
He says one of the key aims of the new policy proposals is to “challenge the stigma” around the condition and focus on the person behind the diagnosis.
“Although we can’t cure dementia, we can help people plan for the future and care and support people at different stages of their illness. About two-thirds of people in care homes have dementia.”
Webb says it is also hoped more support can be provided to younger people with dementia. About 170 people in North Yorkshire have dementia, some of whom are in their thirties. He says identifying and supporting people with dementia is a particular challenge in North Yorkshire, partly because of the county’s rural nature and large size.
“My feeling is often individuals and communities are quite self-reliant. It may be harder for people to make the diagnosis or realise what is happening and there is a desire to carry on and continue as normal. It is often about persuading people to take up help and support.
“North Yorkshire and other rural areas haven’t been at the front of the queue when it has come to new funding. Rural areas need to be funded as well. Because of the geography, it can cost more.
“I think this is a real golden opportunity to see what is most important for people living with dementia and how public services can help them more. It is not necessarily through the council or the NHS but could be things being delivered through local voluntary organisations. We really want to hear people’s voices.
“This is one of the biggest issues for a significant group of people in the county - a big issue in terms of how we develop services and spend money. We want to spend money well in the future and use our collective skills.”
Partnerships ‘key to providing help’
Working together is key to helping dementia patients in North Yorkshire, officials involved with the new strategy say.
The draft strategy has been developed with the help of the Alzheimer’s Society together with the County Council’s dementia support service providers, Dementia Forward and Making Space and involved people living with dementia in its development.
Jill Quinn, chief executive of Dementia Forward, said: “No one organisation can solve this growing problem. The key to providing the much needed support is partnership and working together.”
The key themes include the importance of early diagnosis in managing the condition, ensuring consistent care and support and planning for the future.