An estimated 12,000 older adults in are living with dementia in Nova Scotia.
With that number expected to continue rising as the population ages, researchers want to better support them and their families by improving the care and services they receive no matter where they live in the province.
That’s why they’re seeking input from people with dementia who are living at home as well as from their family members/caregivers and their health care professionals through the province-wide Identifying and Understanding Gaps in Dementia Care Survey.
“Our dementia rates are pretty consistent with other provinces, but Nova Scotia does face some unique challenges relative to the rest of Canada. For example, our population is older than the average,” Nova Scotia Health neuropsychologist Dr. Paula McLaughlin said in an interview.
“We also have many individuals living in rural communities where we know access to the services and supports can be limited. That’s another piece that works not necessarily against us, but it becomes a bit of a barrier.”
McLaughlin is leading the survey study looking at the needs of people with dementia living in the community (not in long term care facilities).
Finding the gaps
“I think a lot of people are wanting to stay within the community as long as possible … We want to be able to set it up so that people have access to the support that they need to live in their home for as long as possible, if that’s what makes sense for them,” she said.
“We want to be meeting those needs, and we know that they’re going to be unique by individual community. But without this information, we can’t really change anything or improve that access to services without really knowing truly where the gaps are.”
Since the survey is seeking input from not only those living with dementia at home but from their family members/care partners and health care professionals who provide dementia care, McLaughlin said they welcome multiple perspectives from the same household.
“There hasn’t been this level of surveillance, at least to my knowledge, in a number of years,” she said of the survey.
“The best experts are those who are living it, and we can’t really help people without knowing what they feel their needs are.”
In 2015, the Department of Health and Wellness and Alzheimer Society of Nova Scotia collaborated to create and publish the province’s first dementia strategy. It identified a number of key priorities.
Those priority areas included: early diagnosis, care, and support for those living with dementia; improving coordinated care across the system; and enhancing awareness and understanding of dementia.
McLaughlin said they’re using the dementia strategy as a guide for their survey.
“What our group is keenly interested in is trying to get a sense of the current needs of those living with dementia, both from a health care services perspective as well as social support services,” McLaughlin said.
“That’s key to monitoring how we’re doing in our dementia strategy and improving those pieces. But also we can’t improve something if we don’t know there’s an issue.”
Impact of pandemic and telehealth
The pandemic unsurprisingly created many challenges for people with dementia and their families. McLaughlin said early restrictions created challenges for care support workers, and she pointed to the pandemic shutdown of in-person support programs and services offered by the Alzheimer Society of Nova Scotia.
Many people rely on that programming, and when the Alzheimer Society was forced to adjust and offer some resources virtually, it removed that in-person engagement.
“It was a really tough time,” McLaughlin said. “Definitely the restrictions have impacted people’s ability to get the health services, but also the social support.”
Another element of the survey examines the use of telehealth services for dementia care during the pandemic. McLaughlin said they want to know more about its effectiveness and whether people were satisfied with the virtual care provided.
“The key thing for us is, OK, we’ve demonstrated that telehealth can be used on a large scale,” she said.
“But is it actually appropriate or do people want to use it, and is it going to stay here beyond the pandemic, especially within dementia care?”
People with lived experience helped researchers develop the survey piece around telehealth. Besides concerns about access to the internet and devices, they suggested some people living with dementia might find themselves so anxious about using the technology that they forget what they need to discuss.
“We suspect, although we don’t know for sure, that some people are opting more for the telephone because they feel more comfortable on the telephone than virtual visits or video conferencing visits,” McLaughlin said.
From Yarmouth to Sydney
The survey study is supported by Nova Scotia Health, Research Nova Scotia, QEII Health Sciences Centre Foundation, and the Alzheimer Society. The survey is open until the end of June, and McLaughlin hopes to get at least 600 responses.
Those living with dementia can get assistance when filling out the survey, and anyone more comfortable with a paper copy can reach out and request one via mail. Researchers hope to have some preliminary results to share in the fall.
“There are disparities in health status and health status indicators throughout the province that we know are contributing factors to dementia — things like diabetes, hypertension, alcohol consumption, smoking — and we know that it looks different throughout the province and those factors can impact those who develop dementia,” McLaughlin said.
“We don’t want to know just what’s going on in HRM. We want to know what’s going on in Sydney. We want to know what’s going on in Yarmouth. Because for us to really get a sense of what’s going on across the province we need input from across the province.”