Improving sleep for people living with dementia and their care partners.
This article was written by a guest contributor, and the views, thoughts, and opinions expressed in this article belong solely to the author.
“The Sleep Kit could be an opportunity for care partners to relax and engage with a “partner”, whether it be a spouse, a friend, a family member or another person."
– Eve Baird
Sleep disturbances are a prevalent issue for persons living with dementia. Some of these can include insomnia, Restless Legs Syndrome (RLS), nightmares, daytime drowsiness and frequent nighttime awakenings. A good night’s sleep is important for our well-being. Lack of sleep may cause increased irritability throughout the day, impaired cognitive performance, reduced motivation and limited attention span.
The Sleep Kit. Photo courtesy of Eve Baird.
During my undergraduate degree in gerontology at St. Thomas University, Dr. Janet Durkee-Lloyd asked our class to research an issue regarding aging and health and come up with an innovative solution. I decided to research dementia and discovered sleep disturbances are a significant problem for people living with dementia and their care partners. If the person with dementia is not sleeping well, it’s likely that their care partner is waking up to meet their needs, and as a result, also is not sleeping well.
A 2005 study by Richards et al. looked at the effects daily individualized social activity had on sleep in nursing home residents living with dementia. This intrigued me because I had been working as an activity co-ordinator in a long-term care home. It made sense that if residents were engaged and active throughout the day, they would be more tired at bedtime. I wondered whether creating a bedtime routine focused on one-on-one social interaction would have an even greater effect on sleep quality.
I came up with a list of 12 items care partners could use with a person living with dementia to prepare them for sleep. The Sleep Kit contains a hand mirror, a hairbrush, a therapeutic CD, lotion, essential oil, a book, an herbal pillow, chamomile tea, a colouring book and markers, and a set of playing cards. These were all items I had used in my work as an activity co-ordinator to spend meaningful time with residents. I also thought The Sleep Kit could be an opportunity for care partners to relax and engage with a “partner”, whether it be a spouse, a friend, a family member or another person.
In 2018, I received Spark funding from the Centre for Aging and Brain Health Innovation (CABHI) and the New Brunswick Health Research Foundation to test and validate The Sleep Kit. We had participants from the community who were living at home, and participants living in a nursing home.
In pre-test questionnaires, four in five informal care partners in the community reported it is sometimes difficult to communicate and meaningfully engage with their partners. Seven in 10 reported that their partner with dementia has or has had trouble sleeping. And almost half of the care partners also have had trouble sleeping because of the person with dementia’s sleep disruptions.
Care partners administered The Sleep Kit activities with their partner for 30 to 60 minutes, for 10 evenings over a two-week period. They wrote in a sleep diary, which is included in The Sleep Kit, about which items they used. This also provided them with the opportunity to share which items were working well or not.
The results from the project were positive. In the nursing home, the Fitbits showed a significant decrease in the number of restless periods before and after using The Sleep Kit. In the long-term care sample, post-test questionnaires showed nearly all care partners said using The Sleep Kit promoted discussion and helped them to connect with the resident. The study showed most residents were more relaxed before sleep after using the kit. And, notably, four in five participants would like to continue using The Sleep Kit.
Researchers also analyzed the sleep diaries and found that, overall, the kit improved routine and focus for participants. One reaction that stood out was from a person whose husband is living with dementia: “I have found a very helpful way to spend a meaningful and relaxing time with my husband. It has improved his sleep quality – and mine,” they said. “But more than this, his mood has improved through the day.”
Partnered with Adrienne McNair of the Alzheimer Society of New Brunswick, we are working hard to get The Sleep Kit into the hands of people who need it most. It is available to borrow at our local library and has been purchased by the Alzheimer Society of New Brunswick for its resource library. It is available in French and English, and can be purchased online at www.thesleepkit.org.
IN THE MARKETPLACE
Find more information about The Sleep Kit in the Dementia Connections Marketplace.
Eve Baird [left] graduated from Gerontology at St. Thomas University in 2016, and returned to complete her Bachelor of Social Work in 2019. She is currently working as a social worker on a research project in Fredericton, New Brunswick to support older adults to age-in-place. Eve is very interested in aging, specifically supporting persons living with dementia. She launched The Sleep Kit online in 2018.
Adrienne McNair [right] is currently a student at St. Thomas University studying Gerontology. She is a strong advocate for persons who are living with dementia. She was the first volunteer to participate in The Sleep Kit research study with a person living in long-term care. She is also a certified activity professional and is always looking for new and creative ways to engage with persons living with dementia.