Singing helps dementia patients with memory loss but the organisation driving this movement is struggling to cover costs.
He sits in front of me, hands together, eyes focused but distant.
He spends less than half an hour telling me his story, or should I say her story.
They say onset dementia isn’t common, he’d argue it is. He’s seen it for himself.
Nick Uys says the hardest day of his life was dropping her off, he thought he would never stop the car. But he did.
He lives alone now and visits her often.
A Ministry of Health spokesperson says 62,000 people were estimated to have dementia in New Zealand last year. So, Nick’s journey is not uncommon.
But what exactly is dementia? Dementia Canterbury’s Manager Darral Campbell says it’s a broad term which covers multiple conditions and symptoms, with Alzheimer's being one of them. She says the last Census estimated there were 5,000 to 7,000 people in Canterbury with dementia.
“We want to emphasise that a diagnosis isn’t a matter of getting your affairs in order and waiting to die but it’s just the beginning of thinking about living life a little differently.”
Darral says music is something which stays with people throughout their journey and is something very important to people with dementia.
Nick agrees and says singing helps his wife Anne. Her favourite is artist is Neil Diamond.
Test your dementia knowledge!
The Cantabrainer’s Choir is a group who meet weekly and sing with people who have neurological conditions such as dementia.
It takes one manager, one music therapist, one speech-language therapist and a bunch of volunteers to run an organisation like Cantabrainer’s Choir.
Cantabrainer’s Choir’s biggest struggling is money. Their speech-language and music therapists come at a cost.
It didn’t take long to realise how vital these two are to the Choir.
Everyone interviewed at the practice wanted an opportunity to thank the ladies at the forefront.
Funding isn’t easy for any organisation, but as Dementia Canterbury’s Manager Darral Campbell says getting people to give to an organisation which is mainly for the elderly is even harder.
"The reality is that aging and dementia are not seen as cuddly problems. It's a competitive market out there for not-for-profits, we're all equally deserving. But in our society, we often don't place the same value on people as they age."
In 2015/6 the Canterbury District Health Board received $1,540,961,000 for patient care.
Canterbury District Health Board’s Senior Media Advisor Sandy Galland says the funding is split according to what the population’s needs.
And how much goes towards dementia?
“Quantifying the total spend is not easy, as many of these [dementia] services are provided in a broader context and calculating the proportion focused on dementia is not possible.
Currently, there are over 600 people in Aged Residential Care dementia beds – the costs for this element are approaching $20 million annually,” says Sandy Galland.
Organisations such as Dementia Canterbury are funded by the Canterbury District Health Board. But even they struggle to cover costs.
Darral Campbell says they receive just under one-third of their funding from the Canterbury District Health Board and are left to fundraise the rest.
Because the Cantabrainer’s Choir is not exclusively for people with dementia, they do not receive funding from Dementia Canterbury and they too, struggle.
Below is a glimpse into what a weekly session with the Cantabrainer’s Choir looks like.
Nick’s wife Anne doesn’t go to the Cantabrainer’s Choir. But much like many who go to the choir, Anne receives musical therapy and Nick says it’s the best thing for her.
“Music has a remarkable effect on dementia patients. A lot of Anne’s therapy is through music and I’ve noticed if you watch patients listening to music they do come to life even those at the end stages of dementia do respond to music and the choir would be fantastic for dementia patients.”
Nick says Anne’s response to music is: “Incredible. She’s a Neil Diamond fanatic. So Neil Diamond could spark her up anytime and definitely music makes a great difference to her persona, her personality and the way she feels.”
Nick believes music helps dementia patients with their memory. “It does recall times. I can say to Anne remember that tune we were in Barcelona or in Dunedin and she can relate to that,” Nick says.
In an extended interview, Nick Uys explains what it’s like to be the husband of someone with dementia. His wife Anne, suffers from onset dementia (early dementia).
Nick Uys on his wife's dementia
New Zealand Brain Research Institute’s Research Director, Doctor Michael MacAskill explains some of the science and statistics around dementia.
He says there’s very little in the way of treatment for dementia but there are a few prevention methods he can suggest. He says they’re very similar to prevention techniques for cardiovascular health because the heart and the brain are closely linked.
“The best way to prevent dementia is to keep your blood pressure low, keep your weight down and avoid diabetes and those sorts of things. Basically healthy living, same things that’ll keep your heart healthy to also keep your brain healthy.”
Dr. MacAskill says due to a longer living generation, dementia numbers are increasing. He says people used to drop dead of a heart attack as soon as they hit retirement but now as people are living longer, they are developing more conditions like dementia in their later stages of life.
And Alzheimers New Zealand agrees with that. Their Dementia Economic Impact Report published in March shows a 29% increase in people with dementia in the last five years. From 48,182 people in 2011 to 62,287 in 2016. Over 170,000 Kiwi’s are predicted to have dementia by 2050.
And as for funding, Dr. MacAskill says dementia isn’t alone in its need for more money.
“In all areas of health we’d want more resourcing, like I say, in dementia, it’s not the treatments we’re lacking accessing to as they don’t exist at this stage. I guess what we’d like at this stage is more resources for supporting people with home care and those sorts of things.”
One factor which can be overlooked is how close family and friends cope with having a loved one with dementia. Dr. MacAskill says it’s not easy in their shoes either.
“As the disease becomes more advanced it becomes more tricky for the loved ones than the person themselves as they lose insight into their own problem. And so, often the burden falls on the family. So they need to look after themselves too. So be prepared to seek help. Be supportive, try not to be frustrated about the things that used to be easy for that person which are now difficult and a lot of emotional distress too for the families and caregivers.”
Dr. MacAskill agrees with the ladies from the Cantabrainer’s Choir and says singing is great for people with dementia and other neurological conditions such as Parkinson's or stroke sufferers.
“It’s certainly positive for a variety of reasons. One is just the social aspect. Singing itself has some specific ways of getting around neurological difficulties. It seems that singing can access different pathways in the brain, potentially alternative ways of solving a problem.”
So, whether it’s about keeping yourself healthy, supporting someone you know or highlighting an issue which is usually overlooked - know that singing in the car at the traffic lights and in the shower while your flatmates are home may be embarrassing but it’s a healthy habit which keeps your mind active and is endorsed by doctors.