Sleep Kits For People With Dementia: A Room 217 Caregiver Story

by Deb Bartlett

Room 217 CDs make their way into study of The Sleep Kit in New Brunswick

It’s not every day that an order for 60 CDs comes in to Room 217. So when it does, we notice. And ask questions. It turns out that a research team in New Brunswick wants to use our music in a study on sleep disturbances in people with dementia.

Eve Baird studied gerontology at St. Thomas University in Fredericton, and is now working at York Care Centre as a rec therapist in a specialized 24-bed unit where all residents have dementia.

The sleep study idea originated with a paper she wrote in university. She had to address a health issue of older adults, and then to create an innovative solution to go along with it. “I decided to write about dementia to explore the topic further, and found that sleep disturbances were a significant issue for these individuals,” says Eve. “There were not many solutions other than exercising more, reducing caffeine and using medications, so I wanted to look at other options.” Her option was The Sleep Kit.

Eve says while there is a lot of support available for caregivers in NB, there are not many tangible tools for them. “I wanted to try and provide them with some kind of solution.” She says studies in New Brunswick point to lack of tools as a reason for high caregiver burnout.

She decided to pursue the idea of The Sleep Kit, and through York Care Centre, applied for research funding, and was awarded $50,000 from the Centre for Aging and Brain Health Innovation. That amount was matched by the New Brunswick Health Research Foundation. Her co-worker Claire Hargrove, who works in the York Care Centre’s adult day program, is her project partner.

Eve is researching not only sleep disturbances in people with dementia, but in finding a solution to that problem. She will study the effects of consistent use of The Sleep Kit by a care partner before bed on the quality of sleep. A total of 50 participants will be studied; half living in their homes, and half living in institutions.

The funding includes the wearing of a Fitbit that will be worn in the evening and overnight for five days pre-test, and over a period of 30 days. “We will be looking at total sleep time, and nighttime awakenings,” says Eve.

The study will begin in the summer in the community, in the fall in the institutions. There will be one report compiled of all data, and Eve says with the help of Janet Durkee-Lloyd, her professor from St. Thomas who encouraged the idea in the beginning, would love to write a published article in the future.

Working in the afternoon and evenings at the nursing home, Eve has seen firsthand sundowning, and sleep disturbances, “which is exacerbated by other symptoms of dementia,” she says.

“Medication is not the answer for everyone,” she says. “It’s important to look at other options.”

She’s hopeful that regular use of the contents of The Sleep Kit in the evening by a care partner will improve the sleep of the person with dementia. The use of the kit will promote a nightly routine, and social interaction, says Eve. She thinks having a connection is important for not only the person with dementia, but also the caregiver.

The Sleep Kit will include items like lotion, a brush, and one of Room 217’s CDs. The CDs have been designed for use in palliative care, but have other applications, including relaxation and pain distraction.

York Care Centre has Room 217 CDs that Eve “uses all the time. I use them with aromatherapy. They’re great. So these are the ones I want to use (in the study).” While the sleep kits are being studied for this project, Eve hopes that in time, the kits can be individualized and marketed for sale.

Eve says aging “shouldn’t be viewed as a crisis,” and feels the conversation and narrative about getting older needs to change. She feels elder care needs to be less “medicalized and more person-centred.” She’s hoping The Sleep Kits will be a catalyst for that.

Deb Bartlett is the resource lead for Room 217 Foundation. By profession, she is a journalist who has worked in community newspapers in the GTA for 30 years. If you have a story to share about how music has affected your caregiving, email [email protected].