Tegan Taylor: So Norman, we do a lot of stories about dementia on the Health Report. Most of them are about understanding how it works in the brain, with the long view to maybe developing drugs that prevent it or treat it better. But for people who are living with it now and their family members who are often also their carers, they need help too. And so I have been looking at a small pilot study that aimed to make life easier for people with dementia and their carers using the power of songwriting.
Singing: Forgetfulness, frustration, clouding in over me. Confusion and anxiety, not knowing what to do…
Tegan Taylor: The singer you're hearing there is Phoebe Stretton-Smith. She's a music therapist, and the song she's singing was actually written by a group of people with younger onset dementia, where people develop dementia when they're younger than 65.
Singing: …doing the best we can…
Tegan Taylor: It's part of a music therapy pilot program led by Samantha Loi, a neuropsychiatrist and researcher with Royal Melbourne Hospital and the University of Melbourne.
Samantha Loi: So, as you know, I've been doing quite a lot of work on young onset dementia, and as I worked clinically with these people I realised there wasn't much to offer them in terms of interventions, particularly for their spouses, who were also then to become their carers. And so this got me thinking about, well, what is it about young onset dementia and having to do something which both the people with dementia and their carers can both participate in, in thinking about how difficult and challenging it can be when given a diagnosis.
Tegan Taylor: The program combines cognitive behavioural therapy along with something called therapeutic songwriting, where participants use the themes that have come up in the talking part of the therapy to create song lyrics.
Samantha Loi: And we thought that this would be an interesting combination, because CBT has been seen in the literature and known to be very good for helping to provide support, also to help try and change people's maladaptive thoughts into something more realistic, but then also combine with something a little bit more novel and perhaps a little bit creative.
Singing: Finding ways to get through this unknown pathway…
Tegan Taylor: Paul Wheelton's wife Angela was part of the program. She was diagnosed with dementia as a 63-year-old in 2022 after an earlier misdiagnosis, and they were looking for all the help they could get. Paul applied for four different medical trials, but kept getting knocked back.
Paul Wheelton: We failed on four because she was a bit too advanced. They want people at the very start so that they can actually easily see progression. If you're already up to a certain level of cognitive decline, they're not interested. We were grasping at straws and would try anything. Music actually just resonated with Angela and really triggered some things deep, deep, deep in her memory.
Tegan Taylor: Paul said Angela really benefited from the program, but it wasn't just for her.
Singing: Life is very different now, shook up and changed completely…
Tegan Taylor: Paul and the other partners of people with dementia who were in the program also worked with music therapist Phoebe to write their own song,
Singing: Watching and checking, thinking, planning, looking for missing things, wondering how long is the piece of string?
Paul Wheelton: And what you did is you put some of your experiences into those songs. Because I'm an accountant, there's not too many musical parts of my body. It was challenging, I've got to say, for me. But then, you know, when you analyse what you're trying to do with it, I think it's a very good process. I did surprise myself.
Singing: But for better or for worse, we're making the most of our time now…
Paul Wheelton: What we've really got out of it is this love of music.
Singing: What does the future hold, what lies ahead…?
Tegan Taylor: The program was a small pilot study with just five couples over six weeks. They met remotely via video chat for therapy sessions. Researcher Samantha Loi hopes the format of the pilot being based entirely online means it could be replicated to help more couples.
Samantha Loi: The tricky thing of young onset dementia, it is a rare dementia, so it's definitely not as common as older onset dementia, it's probably only 5% to 10% of all dementias. And people with young onset dementia are quite geographically spread out. So trying to come together in a group face to face can be quite challenging.
Singing: There's no book, there's no guide. Life is real and life is hard, but for better or for worse, we're making the most of our time now…
Tegan Taylor: Paul says that even though Angela's dementia has progressed since the pilot program, being part of it has given them more tools to enjoy their time together.
Paul Wheelton: There is no cure for this. It is a one-way street. So music therapy, as I look at it, is giving you some extra skills as you go through this journey, to bring some enjoyment to it, to actually make you aware of…there are some great things still in that mind; how do you get them out?
Singing: We're traveling on a long and winding road, at different points and learning as we go. There's no book, there's no guide. Life is real and life is hard, but for better or for worse, we're making the most of our time now…
Samantha Loi: I'm very used to listening and hearing people's stories in a clinical perspective, but I must admit that when I came to listening to the songs which were actually created by these groups of people, when I still listen to it now, it is very emotional, and it comes from their hearts.
Singing: But for better or for worse, we're making the most of our time now...
Tegan Taylor: Associate Professor Samantha Loi is a neuropsychiatrist at Royal Melbourne Hospital and the University of Melbourne, and you also heard there from Paul Wheelton, who's now a carer for his wife, Angela, and the singing voice of music therapist Phoebe Stretton-Smith.
Norman Swan: And, just bouncing off the earlier item on the NDIS with Bill Shorten, there was some publicity over the last few days about music therapy and the NDIS, having to prove benefits for funding for music therapy to continue.
Tegan Taylor: The ABC has done some great reporting on it, and the NDIS has put out a statement, and we'll put links to those on our website. Not directly relevant to the program that you just heard about, but definitely relevant to anyone who relies on music therapy.