“We want you to know that that you are not alone, that someone else has been through something similar and has an inkling of how it feels.”
Kay Hughes is a musician based in Australia.
Kay’s husband Richard is living with dementia.
In this article Kay describes her experiences as a wife and carer for her husband living with dementia and shares her mission – raising awareness about dementia.
“We often hear about the deeply tragic aspects of dementia, and I agree these need to be discussed. But it’s essential that we also talk about living well with dementia, about making the most of life while we can. Life is irrevocably changed, but we can slow the decline and still experience love, joy, meaning and purpose. Social connections are very important so if a friend or family member has dementia, please do whatever you can to remain connected.”
Last year Kay completed an album of dementia-inspired songs which are sung live in dementia awareness face-to-face group sessions, aiming to help those in highly demanding caring roles to feel “less alone”. Race Against Dementia receives 10% of album sales.
“Our greatest hope is that every listener will experience a taste of how it feels when dementia is part of a close relationship”
The album was produced with co-writer (Jon Leslie). Kay said, “Our greatest hope is that every listener will experience a taste of how it feels when dementia is part of a close relationship. For all of those who are in that role now, caring, loving, and perhaps feeling isolated in their journey, we want you to know that that you are not alone, that someone else has been through something similar and has an inkling of how it feels. “
When asked about Bill Yeates, the inspiration behind the song ‘Work of Art’ Kay said,
“Bill has the passion of Ferrari, ingenuity of Lotus, quality of Mercedes and generosity like no other. He loves his family, is a great friend, contributes to community, is highly resilient and embodies the concept of living well with dementia. After being diagnosed with Alzheimer’s in 2019, Bill experienced a period of darkness but came to realise life was worth fighting for. He researched and developed a holistic approach, resulting in his innovative Tree of Awakening Your Positivity, and set himself a goal – which he eventually met – to return to volunteer surf lifesaving.
Bill aims to inspire others with dementia to live a better life. When he shares his story, he shows his vulnerability. Against the odds, Bill’s motor skills have improved; he currently competes in masters Swimming, Finswimming, Pool Rescue and Surf Lifesaving Championships nationally & internationally.
Bill genuinely acknowledges the difficulties and challenges associated with dementia. His resilience is expressed in his catchphrase, “just keep swimming”, which inspired the recent song, “Work of Art”.
Kay has recently connected with Race Against Dementia Fellow, Dr Pradeep Cholan based in Macquarie University in Sydney. “Pradeep had looked at Bill’s website, listened to my new song, and asked if we’d be interested in being part of the Steering Committee for his research project. We’re keeping the discussion going about that and very much look forward to seeing Pradeep’s research progress.”
Kay shared what living well with dementia means to her:
- Acknowledging, feeling and letting go of the huge range of emotions that come with a dementia diagnosis (and continued dementia-driven changes)
- Being proactive – planning for how life can be most enjoyable as changes and likely limitations become clearer
- Promoting a positive lifestyle (we use the principle, “maximise joy, minimise stress”; Bill’s Tree of Awakening Your Positivity is a more structured approach)
- Reviewing lifestyle and adapting where possible
- Finding moments to play
- Celebrating, appreciating and making the most of what is left of life
You can support Kay by:
- Listening to Kay’s music, then tell others how it makes you feel
- Sharing Kay’s music with anyone you believe would benefit from hearing it, particularly those in close relationships with someone who has dementia
- Book a face-to-face Life with Dementia session with Bill Yeates & Kay (minimum 1-hr) or a live story & song session with Kay (from 10-mins to 2-hours). We’re happy to travel.
- Kay is open to collaboration, so let us her know if you have any ideas about how you can raise awareness together.
Some of Kay’s music is freely available (eg The Man She Married, Invisible & Work of Art)
Kay’s album, Invisible No More, is available for purchase here
(10% of album sales are donated to Race Against Dementia – Dementia Australia Research Fellowships)
For more info, Kay’s website is here and Bill’s website is here
Main Photo: Kay Hughes and Bill Yeates
