Henry sits in his wheelchair curled up. His chin is on his chest and one hand is over the other. When his daughter comes to visit, she puts her hands on his and leans to ask how he is doing. “I’m fine,” he replies, clearly agitated. He doesn’t know who she is. The 91-year-old has been in the nursing home for a decade now — his Alzheimer’s disease was so bad that his wife could no longer care for him.
A nurse comes over with a pair of headphones and an iPod filled with gospel music from his youth. She places the headphones on his ears and presses play. Immediately, Henry sits up, mumbles along to the music, and rocks side to side. His eyes open wide as he is brought back to another time. Suddenly, he is someone else; someone who isn’t held back by his wheelchair. When the headphones come off, Henry is asked a few questions and no longer struggles to respond. He can recall that he used to attend large dances in his younger days, that his favorite singer was Cab Calloway, and he then breaks out into song, singing, “I’ll be home for Christmas.”
This is a scene from the award-winning documentary, Alive Inside. The film follows social worker Dan Cohen, the director and founder of the New York-based non-profit organization Music and Memory that strives to help dementia patients live life more fully by donating iPods fitted with personalized playlists. Since the film’s release, many other programs have popped up all over North America and abroad.
Sabrina McCurbin, iPod project coordinator at the Alzheimer Society of Toronto, said she has experienced strong emotional reactions from all dementia patients who have participated in the program.
“You can’t explain how it feels but it [gives] goosebumps, and it’s that sense of you just [being] able to witness somebody being reconnected with the essence of who they have always been. It’s an incredible feeling,” said McCurbin, referring to a women with advanced Alzheimer’s disease, who after listening to music that was played at her wedding could recall minute details of that day.
McCurbin started the program after seeing Alive Inside and wanted to bring it to Toronto. Like McCurbin, Emily Nicholishen, member of the Ryerson women’s volleyball team, wanted to get involved after she watched the documentary.
The program is free and caters to dementia patients living in all settings, no matter if they live at home or require assisted care. All patients receive an iPod, which they can keep for any duration of time, and it is be filled by program volunteers with personalized music recommended by their family or caregivers.
“It’s kind of neat to think if [dementia patients] had their own music player, they could be stimulated like how I saw in the film,” said Nicholishen. “So, I guess that was kind of the motivation for it.”
Nicholishen, in collaboration with the Alzheimer Society of Toronto iPod program, started a month-long iPod drive with her volleyball team. The team’s goal was to collect 80 iPods by Nov. 6 through drop boxes left at the front desks of the Ryerson and Mattamy athletic centres. However, the team has had trouble rallying support from the general Ryerson community.
“Most of our iPod donations have come from friends and family, and not really the Ryerson community dropping them off at the front desk,” said Nicholishen.
As of mid-October, the team has only collected a quarter of their goal. They started an online GoFundMe page to let people without iPods still participate. The donated money is to be used to buy iPod shuffles and charging cables. So far, the page has only collected $220 of their $1,200 goal.
In 2013, when the iPod program was launched in Toronto, the Alzheimer Society started drives at major universities in Toronto, including Ryerson, to help kick off the program.
“Though we did get a good number of iPods in, it wasn’t anywhere near what we anticipated,” said McCurbin.
The Alzheimer Society of Toronto still felt the campaign was a success because it got people talking about Alzheimer’s disease and dementia and how they could support it.
Out of the 47,000 people living with dementia in the Greater Toronto Area, 3,000 of them are a part of the iPod program. The program is gaining about 100 new participants every month.
The iPods have been shown to help patients with anxiety, mood swings, and agitation that would normally be controlled by psychotropic drugs. They also help some patients with cognition, remembering events that coincide with the music.
The mechanisms behind why personal music helps Alzheimer’s disease and dementia patients remember better and improve mood are still unknown.
Alexandra Fiocco, assistant professor in the department of psychology at Ryerson who recently wrote a paper on music and cognition, explained that understanding what music does to the physiology of healthy adults can help speculate how it helps dementia patients.
Music has been shown to increase dopamine, a chemical produced in the brain associated with reward and motivation. By increasing dopamine levels, the reward pathways in the brain increase as well. Therefore, it raises the incentive and motivation to learn new things and triggers memories of the past.
Dopamine is also related to the autonomic nervous system, which controls the arousal of the body such as blood pressure, heart rate, and attention. Music can bring the autonomic nervous system up or down making patients calmer and more relaxed. Music can replace the need for psychotropic drugs, which changes chemical levels in a person’s brain to control behaviour — which has dangerous side effects, such as cognition decline.
“They already have memory problems, they already have cognitive problems, and then you are giving them these drugs that impair them even more,” said Fiocco. “What is wonderful with music is you can decrease agitation, you can decrease the anxiety, and not impact their mental performance.”
Another theory is that music affects many parts of the brain such as the limbic structure, which is important for emotional memory and emotional stimulus, as well as the frontal lobe, which is also important for memory. These parts of the brain are compromised with persons with dementia, and the music could help compensate or aid these structures from deteriorating or even enhance the function and the connection between them.
Although the mechanism behind why personal music helps dementia patients is under research, it’s apparent that music has the power to rekindle connections between dementia patients and their families.
In McCurbin’s experience, she has seen spouses listen to music from their wedding together, grandchildren help their elders load their iPods with music, and patients’ children being able to finally enjoy the company of their parents instead of worrying about care-giving.
“It’s unbelievable that something so simple has so much impact,” said McCurbin.