Caregiving for family members with dementia

Research projects exploring whether virtual supports reduce heavy stress experienced by Indigenous caregivers


By Greg Basky for SHRF


Through her involvement with Saskatchewan’s Rural and Remote Memory Clinic, neuropsychologist Megan O’Connell has seen first hand that Indigenous caregivers outside urban centres lack the resources they need to deal with the heavy stress and pressures that come from caring for a family member with dementia.


“One of the things I tend to see in my work with Indigenous families presenting at the clinic is that they’re going home and they’re not getting any supports or services, or anyone to talk to,” says O’Connell. “Although the Alzheimer Society of Saskatchewan does a great job -- they have numerous support groups -- none of them are designed with and for Indigenous caregivers. So there’s this cultural barrier that is pretty huge.”


A pair of new research projects jointly funded by the Saskatchewan Health Research Foundation (SHRF) and the Alzheimer Society of Saskatchewan (ASOS) are exploring ways to harness the power of the internet to deliver culturally safe support to Indigenous caregivers. One is looking at whether virtual support groups can help caregivers better understand dementia and cope with the pressures that come from looking after a family member who has the disease. The second is exploring whether providing caregivers with access to a “toolkit” of online resources makes them better equipped to care for their family members and to attend to their own mental and physical wellbeing.


Both projects are being conducted in partnership with File Hills Qu'Appelle (FHQ) Tribal Council, which oversees programs and services for 11 First Nations in the Treaty Four Territory in southern Saskatchewan. They are supported by Innovation Grants and are the first to be awarded as part of SHRF’s new Solutions program. The Solutions program is intended to rally researchers and community partners around pressing health issues facing Saskatchewan. ASOS is matching SHRF’s $50,000 contribution to each of the projects.


Joanne Bracken, CEO of the Alzheimer Society of Saskatchewan, says dementia in and of itself is a very isolating disease -- because of the around the clock demands placed on caregivers. “Then you layer a pandemic over top of that, where people are being told to physically distance from others, and now their world just got even smaller. Not having ready access to resources and supports, it’s a huge responsibility caring for a family member with dementia. We know that when caregivers feel well supported, they’re better able to support the person living with dementia.”

Culturally safe caregiver support groups for caregivers of Indigenous people living with dementia


This project, led by Megan O’Connell, will test whether providing caregivers with access to virtual, monthly support group sessions improves their ability to cope with the stresses of caring for a loved one with dementia. Because caregivers of people with dementia are themselves at increased risk of dementia, reducing the mental and physical stress from this demanding role can protect them from developing the condition.


While specific topics for discussion will be determined by participants, sessions will likely include information about dementia and how it advances, factors that increase risk of developing dementia and those that protect against the disease, and strategies to help caregivers cope with caring for a loved one with the condition. Through the sessions, the researchers hope to get a better sense of the impact caregiving is having on the participants and what supports -- including information -- they need.


Support groups are also intended to provide caregivers with culturally safe space to speak openly with other caregivers about their experiences. O’Connell says it can help caregivers to learn that others are wrestling with some of the same challenges they face with their own family member.


While she has a general idea of how the support groups may function based on previous work she’s done, O’Connell says it will be up to the Indigenous caregivers to come up with a format that they feel is culturally safe for all participants. For some groups, for example, that might mean starting each session with a ceremony. Everything is on the table -- including whether to involve the loved one with dementia in the groups and whether the sessions should be facilitated by an Indigenous health care professional or a community member who has been specially trained to lead the discussions.


While the project is focused on First Nations in southern Saskatchewan, O’Connell would love to see a model emerge that can be delivered in a culturally safe way across the province for all people who are caring for a loved one with dementia. “If this works and it makes sense to do so, we could expand this model to include more of the province at some point. One possibility could be that the ASOS offers a new training program targeted at Indigenous caregivers.”

Engaging caregivers of persons with dementia in the virtual delivery of and access to health information and services


The second project, being led by Dr. Gary Groot and Dr. Cari McIlduff, will put into the hands of Indigenous caregivers touchscreen tablets (and small wireless routers that serve as a mobile wi-fi hotspot), giving them ready access to a specially designed, curated suite of information and resources designed to help prevent burnout from heavy burden this role places on them.


The culturally appropriate resources were either developed or collated by researchers at Morning Star Lodge, an Indigenous community based research lab in Regina. They include such things as information on recognizing the signs of onset and progression of dementia, reminder apps for taking pills on time and getting to doctor appointments, and brain-training puzzles and games to help keep caregivers themselves mentally sharp.


Through this project, McIlduff and colleagues hope to gain a clearer picture of the kinds of resources and supports that Indigenous caregivers find most useful, and the extent to which accessing them virtually reduces stress for caregivers. It will build upon previous research by McIlduff looking at the effectiveness of technology in meeting health related needs of Indigenous older adults living in urban settings.


“This project is in response to the communities we work with saying they really need support for their older adults with dementia, and caregivers calling for more support,” says McIlduff.


Besides information designed to help caregivers understand the changes going on in their loved one, the toolkit also includes games and puzzles that the family member with dementia can do on the tablet -- which McIlduff says can provide caregivers with a much-needed break. “Even something as simple as this can give the opportunity to step away from situations that can at times become heated or frustrating, and allow them to reflect on what’s happening. Afterwards they are able to re-engage, having a bit more patience and understanding.”


The project, which she describes as implementation science -- will provide evidence of how well the technology and resources work in a real-world setting. Through interviews, McIlduff and colleagues will determine which resources participants found most useful and supportive.


“I would hope that, first and foremost, they (caregivers) feel supported, that they feel these technologies are useful and making their life a little bit easier.” She also hopes that this small-scale test -- if it proves successful -- can be scaled up to help other caregivers.”

Bracken hopes the projects will build the evidence base upon which ASOS can develop and deliver effective, culturally appropriate programming. “Hopefully they can serve as models that can be used across Canada,” says Bracken. “This is an opportunity to learn how to better engage and work with Indigenous people, so we can provide more culturally specific support for caregivers.”


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