Act now for a dementia-friendly future
BY JASON SIMMONDS
Any community can be a dementia-friendly community: one where people living with dementia are integral in creating spaces where they are understood, respected, supported and empowered.
Dementia Action Week is coming up this 16-22 September. This, which includes World Alzheimer’s Day on 21 September, is the perfect opportunity to make a difference in your own community by exploring and acting on what it means to be dementia-friendly.
Dementia is a brain condition affecting thinking, behaviour and the ability to carry out everyday tasks*. It’s not a normal part of ageing, yet it affects over 421,000 Australians. This number is expected to double in the next thirty years, which means it’s probable that you know someone in your family or circle of friends or work colleagues living with dementia, whether they are aware of it or not.
Younger onset dementia (sometimes called ‘early-onset dementia’) describes any form of dementia diagnosed in someone under the age of 65. Dementia is more common in older people, but people in their sixties, fifties, forties and even thirties can develop it. In 2023 it was estimated there were more than 28,650 people living with younger onset dementia in Australia. This figure is projected to increase to more than 42,400 by 2058.
Dementia is the leading cause of death for Australian women, and the second leading cause of death overall. With no known cure, dementia-friendly communities are an important part of Australia’s future if we are to build caring and healthy communities.
Imagine being treated differently just because you have been diagnosed with a disease like cancer or diabetes. This is often the reality for people living with dementia, their families and carers. Dementia Australia research shows 81 per cent of those with a loved one living with dementia felt that people in shops, cafes and restaurants treated people with dementia differently.
Part of The Salvation Army’s response to this growing need in our community is a new program developed by Worship Arts Australia, a part of the Mission Support Department in collaboration with the UK and Ireland Territory called “Singing by Heart”, a dementia-friendly singing group. Singing by Heart commenced in the UK in 2017 and is now running in over one hundred locations across the UK and Ireland in both corps and aged care facilities. Here in Australia, the resources have been developed for the Australian context, including a mix of sacred and secular songs like Waltzing Matilda and Sadie, the Cleaning Lady, other popular songs on the radio from the '40s, '50s and '60s, and well-known hymns like Amazing Grace.
You can think of dementia like a row of books on a bookshelf, with the most recent memories to the left and childhood memories to the far right. As the disease progresses the books fall over from left to right, with the most recent memories falling over first.
The strong neural pathways in the brain that connect music and memory means that songs from childhood and youth are those which last the longest and can activate memory, calm people’s mood and have lasting effects on quality of life for people living with dementia, even after singing has stopped.
More than just a singing group and not a performance choir, Singing by Heart is a worship experience, with each song in the resource bookended with a relevant scripture and prayer designed to create a seamless worship experience. Each session finishes with a rousing rendition of Home Among the Gum Trees and a reading of The Lord’s Prayer. Songs have been thoroughly researched and selected that will resonate with people living with dementia. The sessions are designed to activate memory while also ministering to the needs of carers and family members of people living with dementia.
The program is being piloted at Balga Corps, Western Australia, and already we are hearing great stories from participants who are engaging with the singing. One practically non-verbal community member was singing along with the songs and at the end of each prayer, would call out an “Amen”.
“With each song the ‘amens’ got stronger and stronger,” said Vivienne, one of the program coordinators from the corps.
Singing by Heart is a free resource to corps and faith expressions of The Salvation Army, with all copyright material licensed centrally. With training on how to become a dementia-friendly community as well as Singing by Heart training provided, new groups are already keen to commence across the country. An online forum for facilitators has been established where we can foster best practice and learn from each other, as well as share stories of life-transformation through the program.
A grant from The Coull Foundation has allowed the program to be adapted to the Australian context and a new Christmas edition of the resource is planned for release later this year. The Coull Foundation Grant will be pivotal in creating a younger onset resource which will draw on more recent songs from artists like Elvis Presley and groups like the Beatles.
Here are some practical steps that your corps or local faith expression can take to create a more dementia-friendly Salvation Army:
Step 1 – Identify a dementia champion for your local faith expression of The Salvation Army
As a dementia champion, you could start conversations with your corps or faith expression and consider including dementia in your local mission delivery plans.
Step 2 – Engage members of your congregation and community
This might mean running a monthly Singing by Heart session or making your building more accessible for people living with dementia.
Step 3 – Implement and sustain change
For example, access free Dementia Friends resources and look at the physical environment of your facilities. These might include high-contrast design features (such as different-coloured toilet seats, distinctive buttons for flushing and signage on the exit door). Consider inclusion of ‘quiet spaces’ in refurbishments and new buildings.
If you’re interested in hosting Singing by Heart at your corps or local faith expression, please reach out to Jason Simmonds at jason.simmonds@salvationarmy.org.au or on 0400 242 893, who can give you more information or facilitate a presentation to your leadership team.
*All statistics and information on dementia from Dementia Australia
Jason Simmonds is the Mission Support Department and Worship Arts Australia Community Arts Engagement Coordinator.
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