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Beyond a Diagnosis

Updated: Jan 7, 2022

Looking at New Ways to Support Patients and Caregivers Living with Dementia in Rural and Remote Saskatchewan

Those who are living with dementia in Saskatchewan’s rural and remote areas face many challenges, beginning with receiving a proper diagnosis, and continuing with disease management, care and support. Dementia is a progressive disease with no cure. It affects a person’s memory and other thinking abilities to an extent that it can interfere with daily life and one’s ability to participate in social activities. The impact on caregivers’ health and wellness is also a concern.

This past year the Public Health Agency of Canada released our country’s first national strategy on dementia. The second phase of the Canadian Consortium on Neurodegeneration in Aging (CCNA) was also announced, and with this national work came a reinvestment in fostering collaborations for research in the areas of prevention, treatment and quality of life.

“The Strategy draws attention to the barriers to dementia care that are faced by people living in rural and remote communities, and our team continues to focus our research efforts on the specific needs of this population,” says Dr. Debra Morgan.

Left to right: Dr. Julie Kosteniuk, Dr. Megan O’Connell, Dr. Debra Morgan, Dr. Andrew Kirk. (Photo: Michael Robin)

Saskatchewan Health Research Foundation (SHRF) has long been a supporter of the Rural Dementia Action Research (RaDAR) team and has reinvested in Phase II of the CCNA. The RaDAR team made great strides in Phase I of the CCNA to build capacity for rural and remote dementia care with rural memory clinics that bring together a team of health care professionals and supports for dementia diagnosis and management.

Now in Phase II, as they continue to work with these rural teams to operationalize best practices in primary health care for dementia in ways that are feasible and sustainable in rural settings, the team is also focusing on how to deliver a suite of interventions tailored to individual families’ needs – supports for not only the patients, but also the caregivers.

Dr. Megan O’Connell is co-lead of the ‘Issues in Dementia Care for Rural Populations’ team in Phase II. She is an active member of the rural teams as a clinician and has seen first hand what needs are not being met.

“Interventions are a missing puzzle piece that will help support not only patients and caregivers, but rural primary health care providers in providing support to rural patients,” says O’Connell.

Many of these interventions will be made possible because of the novel approach of using Saskatchewan’s Telehealth network for delivery.

“I think we are uniquely situated to do this work because of our province’s investment in our Telehealth network,” comments O’Connell. “It doesn’t matter where you live, you see the specialist you need to see and who knows how to help you if you have dementia, and I really see that as exciting. Saskatchewan can be at the forefront of this way of delivering support.”

About the Suite of Interventions

Cognitive Rehabilitation

Cognitive rehabilitation is an individualized, person-centred therapy that helps people achieve personal goals that will improve everyday functions and activities. It’s about helping people with issues around learning, memory, perception and problem solving in our day-to-day life. This personalized approach will be delivered via Telehealth and the research will look at the impact on mood, quality of life and satisfaction with achieving these personal goals for those living with dementia and their caregivers.

Cognitive Behavioural Therapy for Insomnia Adapted to Dementia

If you’ve ever suffered from sleep disturbances, you know that this can impact your quality of life in profound ways. Chronic sleep disturbance is common for those living with dementia and their caregivers. Cognitive behavioural therapy (CBT) is an effective way to change patterns of thinking and behaving that are negatively impacting our lives. Although this treatment for insomnia has been adapted for Telehealth and for persons with cognitive impairment, it has not been adapted for use in persons with dementia. Delivered via Telehealth, the research team will look at introducing behaviour changes to positively impact sleep, mood and quality of life. Another benefit of this research will be the improved access to this effective treatment for rural dementia patients and caregivers.

Driving Cessation

“When we talk about a diagnosis of dementia, it can be upsetting. When we talk about the implications of that diagnosis on driving, that gets really upsetting, and I think this has a lot more meaning for those living in a rural setting,” says O’Connell.

For those who have been asked to stop driving, it can affect their psychological health and sometimes even lead to depression. It can cause stress for all involved, including families and health care providers.

“One of the things that the driving team we are working with [Team 16 from the CCNA] have said is that we have all these education pieces for people and families, but they’re still not dealing with the psychological factors,” explains O’Connell. “So, we are going to work with the team and use problem solving therapy and adapt it for Telehealth delivery in a rural setting.”

Social Inclusion

Social support for those living with dementia is very important to both the patient and the caregiver, but it is also something that often falls away fairly quickly after facing a diagnosis. Caregivers can feel increasingly isolated and don’t feel like they can ask for help from those around them.

Formal social support interventions, like a support group, are only one piece of the puzzle. People don’t always understand their social networks and biases – how it works for them, how it doesn’t work and how to make changes to make it work better. This research will look at training people to understand their social support network and how to engage with it differently or have different views about it to better provide the support they need. This intervention will likely involve how to deal with the stigma of dementia.

RuralCARE app

Using an app that was co-designed by urban caregivers of persons with dementia, the team will adapt this app for caregivers living in rural Saskatchewan. Working with an existing Telehealth support group developed by O’Connell, this app will provide more opportunities for contact and support among the group, creating a virtual community of support between regular Telehealth meetings.

“As baby boomers age, I see this as the future,” comments O’Connell. “I also see this as a careful step, as we want to ensure this is a positive impact on mental health.”

Indigenous Caregiver Support

The only way to provide support that is meaningful and welcoming for Indigenous caregivers of those living with dementia is to co-design and create it with them.

“What will an Indigenous support group look like? How will we deliver it? Hopefully our collective goal will be something that is created by and for Indigenous caregivers that can be delivered province-wide and be something caregivers can access that feels safe and meaningful and created in a way that works for them,” says O’Connell.

The team will be working with the CCNA ‘Issues in Dementia Care for Indigenous Populations’ team and with the community and the File Hills Qu’Appelle Tribal Council in southern Saskatchewan.

“Adding these supports is really exciting and means our memory clinics will deliver a more complete package, bringing together a triad of approaches for diagnosis, management and interventions,” comments Morgan about the potential these new interventions will offer rural and remote patients and caregivers.

O’Connell reflects, “Nothing can change the course of dementia. However, you can change people’s quality of life, which can make some profound differences in people’s lives.”

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