Forget me not

It’s widely understood as a condition of the elderly but over 42,000 younger people are living with dementia in the UK, according to the Alzheimer’s Society. Dementia is said to be young onset when it affects people of working age, typically between 30 and 65 years old.

Despite the prevalence of young-onset dementia, the condition receives limited attention in terms of public awareness, research and appropriate support, and the voices of sufferers often go unheard. Camerata in the Community, the social arm of Manchester Camerata, is determined to change that and to challenge our understanding of dementia. Founded in 1972, the trailblazing ensemble has constantly redefined what an orchestra can do. Now, using its unique approach of music-led sessions, the camerata has spent the last 18 months uncovering the real story of life with young-onset dementia.

The project, Dementia Voices, has united artists, health professionals and young people living with dementia to create a new theatre piece. It is currently being shared with communities across Greater Manchester in a bid to raise awareness about the condition.

The project was born in 2015 when the camerata first collaborated with playwright and performer Louise Wallwein to explore young-onset dementia. Wishing to develop the project, Jacqui Barnes, assistant music producer, contacted local dementia support groups and arranged sessions where sufferers could share their stories, facilitated by the unifying power of music.

“We realised there is a gap in public knowledge that needs to be filled,” Barnes says. “Young-onset is considered a rare form of dementia because of the lack of research. There is still the assumption that dementia will come later in life and it is only about forgetting things.

“This is why we have chosen the title Hidden for the piece – these people are a hidden part of society and their voices are often forgotten. We also explore the unseen experience of their carers.”

From a locked door with no way out to a broken-down cello, the sharing sessions produced many moving metaphors for young-onset dementia and these expressions, stories and emotions were captured in a script by Wallwein. Musician Jaydev Mistry, working with Andrea Vogler and Heather Bills, composed music to accompany the narrative. Directed by Sue Roberts, the resulting production navigates the lives of Pat and her loving wife Kay, and Daniel and his slightly overbearing mother Mary.

“We experience Pat suddenly realising that she is not herself, and we see what it is like for Kay to watch the woman she adores disappear before her eyes,” says Barnes. “We see Mary coming to terms with her beloved son’s dementia. Music is integral to the piece as there are moments where it transcends words.”

The piece strikes a balance between the challenges of young-onset dementia and the inspirational positivity of the people Manchester Camerata consulted. As one young woman said: “We laugh a lot at some of the silly things I do – laughing together is so important”.

Barnes says: “Life with dementia is a rollercoaster of emotions. Although there are difficulties, we also want to show moments of happiness and joy. Everyone we spoke to was a bright light and we wanted to capture these characters.”

Robin Lyons plays the role of Daniel, a young man whose comfortable family life has been turned upside down by his dementia diagnosis. The cast is completed by Susan Aderin (Pat), Danielle Henry (Kay) and Alexandra Mathie (Mary).

“It was a learning curve for me,” Lyons says. “Regardless of acting experience, this role is really challenging. You need to strike the fine balance of making sure you are playing the character and not the disease itself. Having dementia is a completely different experience for every person and I’ve only just come to terms with that.”

Although younger people experience similar symptoms to older people with dementia, the impact on their lives is far greater. Many younger people with dementia report feeling blindsided by a dementia diagnosis and it can pose specific challenges for those with a long and full life ahead of them. They often have more responsibilities in regard to their family life, career and finances. And since young-onset dementia is comparatively rare, age-appropriate support and information is not always accessible.

“You are cut down in your prime,” Barnes says. “Most dementia groups are naturally aimed at older people with events such as bingo nights but young people want to be active. They don’t want to feel old.”

“When I was diagnosed, I felt alone and I didn’t know where to turn,” Patrick, who is living with young-onset dementia at 35, recalls. “Services don’t suit a young, gay man with dementia and I don’t have a partner, or family close by, to help support me.”

Julia Collins, a dementia support adviser for the Manchester area, believes that younger people with dementia are often “dismissed” when they reach out for help because dementia is still widely understood to be an “old person’s disease”.

“Symptoms can be attributed to depression, or anxiety, so anti-depressants are often prescribed and little follow-up given,” Collins says. “It can be difficult for a person’s workplace to understand changes in their performance, and quite often people are let go for poor performance before a diagnosis is made.”

“People say to me ‘you don’t look like you’ve got dementia’ but what does dementia even look like? I’m no different really,” a young man with dementia shared with the Manchester Camerata team. “I wake up every morning singing – usually Dance With My Father by Luther Vandross.”

Following the recent success of BBC’s Our Dementia Choir with Vicky McClure, the relationship between dementia and music is in the public eye. Health secretary Matt Hancock recently called for more music therapy in a bid to prevent dementia becoming “over-medicalised”.  It’s something members of Manchester Camerata say they known for years. Dementia Voices builds on its established work with people living with dementia across the North West. Established in 2012, the Music in Mind programme uses music as an innovative tool to improve their quality of life.

“The programme brings together the clinical work of music therapists alongside orchestral musicians in a unique approach,” says Lucy Geddes, head of Camerata in the Community.

“We focus workshop sessions on encouraging participants to express themselves, communicate and build relationships with others.”

At the end of each show, the audience will be invited to create music with the cast. This is followed by an informal workshop and discussion group where people with young-onset dementia are encouraged to talk about their experiences.

“I want people to go away and think about what they could do in their community to help make it more dementia friendly for younger people,” says Barnes. “We are inviting people from the NHS and support workers so they can think about what they can do for positive change. The project is too special not to grow beyond the performances.”

Hidden continues until 29 June at various venues around Greater Manchester. 

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JAYDE’S STORY

At the age of 27, Jayde Greene discovered she had inherited a rare mutated gene from her father. Genetic testing can predict, with near certainty, that Jayde will develop young-onset dementia. A member of only two families with this exact gene in the UK, she is likely to see symptoms in her early forties.

“I do worry about my memory going every day,” Greene, 29, says. “Every time I forget something, I panic that it’s already started but I also know forgetfulness can be brought on by stress.”

As her son’s third birthday approaches, she is determined to stay positive and is attempting to raise funds for what could be, for her and others, life-changing research.

“Why would I spend the rest of my life miserable if I can’t do anything about it?” she says. “I don’t want my little boy having a bad life so I can’t be selfish.

“I feel very touched by projects like Dementia Voices. Whenever I see people raising awareness I take it personally, and every day someone is working on research to make sure I can spend my life with my son.”

You can follow Jayde Greene’s story on Facebook by searching for My Journey for Dementia.