The Impact of COVID-19 on Family Caregivers for Persons Living with Dementia

The COVID-19 pandemic has had a disproportionate effect on older adults living with dementia (PLWD) and their family caregivers (FCGs). For FCGs, the pandemic has impacted almost every dimension of their lives and caregiving routines, as they attempt to navigate changing public health measures, restrictions, closures, and changes to the resources they use in daily care. The pandemic has also increased isolation for FCGs and PLWD, both for those living in long-term care and in the community.

To better support FCGs during the current COVID-19 pandemic and prepare for future public health emergencies, we need a better understanding of how COVID-19 and public health measures have impacted caregivers’ experiences and the systemic gaps in resources. Unfortunately, little is known about how to provide resources during a pandemic in a way that both promotes public health and enables FCGs to continue providing care.

This research project addresses the devastating impact of COVID-19 on PLWD and their FCGs through three phases of research.

Phase 1: Calgary-area pilot study (Summer 2020)

Support for Phase 1 was generously provided by the Alzheimer Society of Calgary.

In the first phase of the study, we assembled a Community Advisory Committee to help guide the research. The Advisory Committee was comprised of community partners (Alzheimer Society of Calgary and Dementia Network Calgary) and FCGs for PLWD.

Based on the committee’s guidance, we conducted an online survey with Calgary-area FCGs for PLWD, as well follow-up focus groups, in the summer of 2020. The goal of the survey and focus groups was to understand FCGs’ knowledge about the pandemic, their ability to provide care/visit family members, and the effect of pandemic-related restrictions on the caregiving dyad (FCG and PLWD). 230 FCGs participated in the survey and 21 participated in follow-up focus groups.

The study’s results were shared with our community partners through public presentations and the Caring for Caregivers: The Impact of COVID-19 on Family Caregivers for Persons Living with Dementia pilot report. The report is housed on the Alzheimer Society of Calgary website where is has been accessed over 320 times and Dementia Network Calgary website where is have been viewed over 600 times. Results have also been presented in publications, conference presentations, media coverage and webinars (see list below).

The recommendations from our Caring for Caregivers pilot report were included in the recently released Improving Quality of Life for Residents in Facility-Based Continuing Care: Alberta Facility-Based Continuing Care Review Recommendations Final Report (2021) that was prepared for the Alberta Department of Health.

The recommendations from Phase 1 of the study were:

1. Caregiving support
   Caregiving support resources should be consistently available for FCGs to provide effective care. COVID-19 public health measures make support services difficult or not possible to offer. Regular check-ins by case managers and resource information updates would enable access to the services that are available.
2. Clear, correct and concise information
   FCGs require more timely information about public health protocols to enable optimal care provision and resource access. For effective delivery of this specific information, it should be communicated through multiple media sources.
3. Continued access to care recipients
   FCGs are not just visitors, they are essential care partners that provide necessary care for PLWD in supportive living facilities. Further, FCGs should have full and complete access to their PLWD if there are hospitalized to ensure the PLWD receives optimum care. They recognize the need for essential infection control procedures and are willing to take appropriate training to ensure continued access across all facility types.

Phase 2: Alberta-wide study (Summer 2021)

Support for phase 2 was generously provided by the Drummond Foundation.

The community advisory committee was expanded to include representation from province-wide community organizations, healthcare providers, academics, and FCGs for PLWD (Alzheimer Society of Calgary, Dementia Network Calgary, Alzheimer Society of Alberta and Northwest Territories, Caregivers Alberta, The Seniors Health Strategic Clinical Network). Our advisory committee assisted the research team in updating, streamlining and distributing the survey across the province. They were also pivotal in designing the focus group discussion guides and interpreting the results from the study. Approximately 305 FCGs participated in the province-wide survey (official numbers pending final data cleaning), and 27 FCGs participated in the focus groups.

Data collection for phase 2 concluded in summer 2021, with data analysis now underway. The goal is to refine our recommendations for policy makers, public health officials, and dementia and caregiving resource agencies that enhance access, efficacy, and supports for family caregivers during the COVID-19 pandemic and in future public health emergencies.

Phase 3: Supporting Family Caregivers for People Living with Dementia: Identifying Essential Resources for the COVID-19 Pandemic and Future Public Health Emergencies (forthcoming 2022)

Phase 3 of the study is currently being designed. The goal of phase 3 is to build upon the foundational work in phases 1 and 2. In this phase, system level essential care provision resources for family caregivers for people living with dementia that are needed and available during a public health emergency will be identified. Recommendations will then be developed for system level implementation.

Gwen McGhan, RN, PhD, GNC(c) is an Assistant Professor in the Faculty of Nursing at the University of Calgary. Her research program examines targeting care provision resources and developing tailored interventions that address the needs of older adults, including those living with dementia, and their family caregivers.

Dr. Deirdre McCaughey, PhD, MBA; is an Associate Professor in the Cumming School of Medicine, at University of Calgary. Her research involves examining organizational factors (e.g. structures & processes,) in healthcare systems that influence and optimize patients, families, healthcare providers and the healthcare workforce.

Kim Brundrit (BSc, MBA) is the Collective Impact Lead at Dementia Network Calgary (DNC). DNC uses the evidence provided by this and other projects to advocate for and support people impacted by dementia, in order to pursue its goal of making Calgary a place where people impacted by dementia can live life well. Kim is also the co-chair of the Calgary Missing Older Adult Resource Network, on the leadership team of the CORE Alberta Caregivers Group, a volunteer with Canadian Red Cross Disaster Management, and a caregiver for her mother who lives with dementia.

• Alzheimer Society of Calgary
• Dementia Network Calgary
• Alzheimer Society of Alberta and Northwest Territories
• Caregivers Alberta
• The Seniors Health Strategic Clinical Network (Alberta Health Services)
• CORE
• W21C

Special thank you to the family caregivers assisting us in this work: Sheena Bates, Daniel Gaetano, and Wayne Hykaway

Reports

• Caring for Caregivers: Data Report for Calgary Pilot Study Summer 2020
• Tailored, Community-Based Intervention Program for People Living with Dementia and their Family Caregivers

Journal Articles

• COVID-19 and Long-Term Care: the Essential Role of Family Caregivers. Canadian Geriatrics Journal. Sept. 2021.
• Examining the needs of family caregivers for people living with dementia in the community during the Covid-19 pandemic. Under review at Canadian Journal on Aging.
• Public health messaging during Covid-19 & its impact on family caregivers. Under review at Healthcare Policy.
• Tailored, Community-Based Programs for People Living with Dementia and Their Family Caregiver. Under review at The Journal of Gerontological Nursing.
• Family Caregiving for People Living With Dementia During COVID-19: A Thematic Analysis. Journal of Family Nursing. June 2022.

Publications and Reports

• ‘You’re kind of in limbo’: Study examines pandemic burden for caregivers of those with dementia
• UofC study looks at pandemic burden for dementia caregivers
• Caregivers for family living with dementia need support: survey
• Caregiving in uncertain times. Families that support their loved ones with dementia face increased challenges during COVID-19. Dementia Connections, Fall 2020. (p. 14-16).
• Spotlight on Caring: Exploring the challenges of caregivers during COVID-19. Dementia Connections, Summer 2021. (p. 45-47).
• The Impact of COVID-19 on family caregivers for persons living with dementia. W21C Research and Innovation Centre Annual Report 2020-2021. (p. 16-17).

Webinars

• McGhan, G., & McCaughey, D. (2021). The Impact of COVID-19 on Family Caregivers for Persons Living with Dementia. Virtual presentation for Dementia Network Calgary Webinar.
• McGhan, G. (2020). Caring for the Caregiver. Virtual presentation for UCalgary Nursing Food for Thought Breakfast Lecture Series.
• McGhan, G., & McCaughey, D. (2020). The Impact of COVID-19 on Family Caregivers for Persons Living with Dementia. Virtual presentation for CORE Family Caregivers Group: Launch Event and Discussion Forum.

Theses

• Mithani, S. A. (2021). Examining End-of-Life Experiences of Family Caregivers for People Living with Dementia During Covid-19: An Interpretive Description Study.

Conference Presentations

• McGhan, G., McCaughey, D. (2022). The Challenges of Being a Family Caregiver During the COVID-19 Pandemic in Canada. Caregivers Together Conference, May, 2022. Virtual Conference.
• Bhalla, Rhea, student at Notre Dame High School (2022). Comparison of COVID-19’s Impact on Persons with Dementia Experiencing Responsive Behaviours During Initial and Later Waves of the Pandemic. Calgary Youth Science Fair, April, 2022. Winner of the Calgary Youth Science Fair Director’s Award.
• McGhan, G. (Chair), McCaughey, D. (Co-Chair) (2021). Improving Outcomes for Caregivers and Older Care Recipients at the Gerontological Society of America Scientific Meeting, November, 2021. Virtual Conference.
• McGhan, G., McCaughey, D., Flemons, K., Hindmarch W. (2021). Public Health Messaging and Measures during COVID-19: The Experiences of Family Caregivers. Accepted as symposium presentation at the Gerontological Society of America Scientific Meeting November, 2021. Virtual Conference.
• Flemons, K., McGhan, G., McCaughey, D., & Hindmarch, W. (2021). Beyond the Lockdown Binary: Family Caregiver Needs For Creative Solutions During a Global Pandemic. Accepted as symposium presentation at the Gerontological Society of America Scientific Meeting, November, 2021. Virtual Conference.
• McGhan, G., McCaughey, D., Flemons, K., Hindmarch, W. (2021). Resources and Services for Family Caregivers in the Time of COVID-19. Accepted for paper presentation at the Gerontological Society of America Scientific Meeting, November, 2021. Virtual Conference.
• Mithani*, S., McGhan, G., McCaughey, D., & Flemons, K. (2021). Determining the Impact Of COVID-19 on End-of-Life Experiences of Family Caregivers for People Living with Dementia. Accepted for paper presentation at the Gerontological Society of America Scientific Meeting, November, 2021. Virtual Conference.
• McGhan, G. (Chair), McCaughey, D. (Co-Chair) (2021). Exploring the Impacts of COVID- 19 on Family Caregivers in Four Canadian Provinces. Accepted as symposium at the 50th Annual Scientific and Educational Meeting of the Canadian Association of Gerontology, October, 2021. Virtual Conference.
• McCaughey, D., McGhan, G., Flemons, K. & Hindmarch, W. (2021). Public Health Measures & COVID-19: Unintended Impacts on Family Caregivers and Persons Living With Dementia. Accepted as symposium presentation at the 50th Annual Scientific and Educational Meeting of the Canadian Association of Gerontology, October, 2021. Virtual Conference.