‘Ottawa’ Together, they Lift the Melancholy Veil of Dementia Through Song
Twenty people sit on stacking chairs arranged in a semi-circle in a large, brightly lit room in Kanata’s Eva James Memorial Community Centre. Some are armed with shakers and other percussive instruments, while others hold lyric sheets to such songs as King of the Road, Keep on the Sunny Side, 16 Tons and Kookaburra.
In the centre of it all, singer/songwriter Jennifer Noxon plays acoustic guitar as she leads the group in song: Blue moooooon … you saw me standing alone … without a dream in my heart … without a love of my own …
As the group sings along, one of the couples — Paul and Janice Bertrand — softly hold hands and then rise to their feet. They embrace one another like the moon and tide, and begin to dance. Their gazes overflow with tenderness, love and joy. They married 28 years ago, on July 1. The date was Paul’s suggestion, so there would always be fireworks on their anniversary.
Two years ago, Paul was diagnosed with mixed dementia, in his case a combination of Alzheimer’s disease and vascular dementia. His scores on the Montreal Cognitive Assessment test have gradually worsened with time, and as his condition deteriorates, parts of him seem to simply disappear, like pixels flickering out on an old TV screen. One morning last summer, he wondered aloud who the woman next to him in his bed was. And formerly an extremely social person, he seems increasingly content to sit at home and do nothing.
Janice, like her husband a former schoolteacher, refuses to go quietly into that night. She takes Paul to a number of programs that help keep his mind active and in social settings. The Tuesday-morning, 90-minute weekly singing group they’ve been attending for the last two years is part of a program called Minds in Song. Organized by the Alzheimer Society of Ottawa and Renfrew County, it fits the bill perfectly, for over his 78 years, music has been an integral part of Paul’s life. His mother was an operatic singer, and he’s sung in numerous choirs and groups since he was a youngster.
And it’s often through music that he now engages with the rest of the world. “When we went to the NAC on Wednesday,” Janice says, “he initiated conversations that evening, which he doesn’t normally do anymore. He’s happy and animated more after these sessions. Any time he’s singing, it’s good.”
Paul’s response to her remark is at once funny and sad: “You’re going to have to tell me about what I did,” he says.
The benefits of music therapy to those with dementia are well known. Stories are often told of patients who are completely unable to speak yet able to sing. According to Alzheimer Society of Ottawa CEO Paddy Bowen, the last thing to disappear in dementia patients is typically their emotional memory, to which music is a primary trigger.
“When your mother doesn’t recognize your name and doesn’t have a clue what time dinner is or what she had for lunch, you can still evoke an emotional memory by saying ‘Do you remember my wedding, mom? Do you remember when I was born? Or when dad died?’ she says.
“Emotional memory is the last thing to go, and so we can generate emotion, and of course by music — we know this from our own lives — turn on the radio and a song comes up that was playing at your prom, and it’s like you’re there. It’s amazing. And so people with dementia, who can often be in quite a fog — they’re non-responsive, they’re at a stage in the progression of their disease where they’re really shut down, and music reaches them just like it reaches us. It’s remarkable.”
One caregiver with the Kanata group, Cherith Cook, excitedly shares an exchange she had a day earlier with her husband John’s doctor. For more than a year now, John has been on Aricept, a drug that, while not slowing the progression of dementia, is used to improve cognition and behaviour of people with Alzheimer’s.
“(His doctor) said he’s responded better to the Aricept than any of her other patients on the same kind of medication,” she said. “And she attributes a lot of that to programs like this.”
Bowen notes, however, that music therapy does not reverse or slow dementia’s pitiless march. “I don’t think there’s a medical connection between music and cognitive ability, but any person on the dementia journey has good days and bad days and moments when they’re more with it. And there are numerous environmental factors that affect the day-to-day capacity of that person, so I would not be surprised that a person engaged in music is more alert and more content. It’s not changing the medical progression of the disease — nothing slows the degeneration except your own DNA and luck — but it may change that person’s experience.
“Music,” she adds, “reaches the person who is in the process of degenerating more effectively than other interventions. Music is probably the most important sensory intervention that there is.”
There are other benefits beyond the immediate well-being of those with dementia. Like other Alzheimer’s Society programs such as Minds in Motion, which promotes physical and other activities, and SPARK!, an arts-themed program run with the National Gallery of Canada, Minds in Song is geared to both the caregiver and the person with dementia.
“It involves what we call the dyad,” says Bowen. “The two. Most programs are for one or the other. This is something they can do together that transcends the dementia, it transcends age, it transcends race and all of those things, because of course music, like physical activity, is universal.
“It’s something they share, which is wonderful for the caregiver who’s watching this person they love slowly disappear. And then they go to this program and suddenly their mom or husband is with them in a way that they’re not the rest of the time. It’s very powerful stuff.”
Janice agrees. Minds in Song allows the two of them to socialize with others who are in similar situations, without having to navigate the fear or discomfort they experience elsewhere.
“You don’t feel judged by the people here,” she says, “because you’re all in the same boat. It’s a time when you find out who your friends are. People that you thought would at least continue to talk to Paul, it’s like they’re afraid they’re going to catch it or something.”
Bowen notes that on some philosophical level, programs like Minds in Song are at least a start to a society that is comfortable integrating people with dementia into everyday activities.
“The world is very mainstream,” she says, “and revolves around couples who do stuff together and people who golf and people who go to concerts — all those kind of mainstream activities — and it’s very awkward to be bringing your partner along who used to be a university professor or whatever, and suddenly they’re there and they’re looking vacant and they can’t really answer questions or engage in the conversation or they don’t hear well. It makes people uncomfortable, so they just stop asking you.”
Noxon notes that the program gives participants a sense of community and normalcy. “They sing with others, which is always a buoyant experience. They’ll come in quiet and leave all bubbly. They’ll say it was the best two hours in their week.”
Still, the challenges are enormous. The Kanata Minds in Song is the largest of three such programs run by the society, in a city where 20,000 people or more suffer dementia. “But that’s going to change,” says Bowen, “as there are more people living that reality.”
Perhaps to accommodate the dancers on this particular Tuesday, Noxon’s rendition of Blue Moon gets two full rounds, as Janice and Paul close off their waltz with a close embrace, with beaming smiles and eyes lit like youngsters’. Janice knows the singing and dancing won’t bring the Paul of 20 years ago back. It may not even slow his disease down. But it helps her hang on to the Paul that’s still here. “You have to have hope,” she says.
And then there suddenly appeared before me, the only one my arms will ever hold.
I heard somebody whisper ‘Please adore me,’ and when I looked the moon had turned to gold…