Examining the Needs of Family Caregivers of People Living with Dementia in the Community during the COVID-19 Pandemic.

The COVID-19 pandemic has had a disproportionate effect on older adults and their family caregivers (FCGs). For FCGs, the pandemic has impacted almost every dimension of their lives and caregiving routines, from their own risk of becoming ill to their access to resources that support caregiving. The purpose of this mixed-methods study was to examine the impact of COVID-19 on FCGs' ability to provide care for their family member with dementia. A total of 115 FCGs who identified as having their family member living with dementia residing in the community completed the survey. Ten family caregivers participated in the follow-up focus groups. Recommendations to address the needs of FCGs now and in the future include: (1) making resources for care provision consistently available and tailored, (2) providing support for navigating the health care system, and (3) supplying concise information on how to provide care during public health emergencies.

Public Health Messaging during the COVID-19 Pandemic and Its Impact on Family Caregivers' COVID-19 Knowledge.

BACKGROUND: Enabling accurate, accessible public health messaging is a critical role of public health officials during a pandemic, but family caregivers of people living with dementia (PLWD) have rarely been specifically addressed in public health messaging. OBJECTIVE: The objective of this study was to examine how family caregivers for people living with dementia access and evaluate public health messaging in Alberta. METHOD: An online survey was conducted with family caregivers for PLWD (n = 217). RESULTS: Most respondents rated public health messaging as good or excellent (63.9%), but specific information about how to access caregiving information (69.5%) and what to expect in the future (49.1%) was rated as less than good. Family caregivers also identified how to care for a PLWD during the pandemic (57.5%) as a key information need. Healthcare providers/workers were the least frequently used source of public health messaging. Almost all family caregivers (94.4%) rated their own COVID-19 knowledge as good or excellent. DISCUSSION: Tailored, context-driven public health messaging for family caregivers of PLWD is critically needed.

Family Caregiving for People Living With Dementia During COVID-19: A Thematic Analysis.

This study examines the experiences and needs of family caregivers (FCGs) for people living with dementia (PLWD) during the coronavirus disease 2019 (COVID-19) pandemic. Six focus groups were conducted with 21 FCGs from across the care continuum and thematic analysis was used to illuminate FCGs descriptions of their experiences and needs. Three main themes were identified that highlight the disruption the pandemic caused for FCGs: changes in the caregiving role, information use and needs, and mental and physical health outcomes. To better support FCGs during COVID-19 and future public health emergencies, we recommend that (a) information is accessible, specific, and centralized; (b) resources are tailored to the caregiving dyad (FCG and PLWD) and creatively adapted to public health restrictions; and (c) opportunities for the caregiving dyad to receive physical, social, and emotional engagement and support are maintained.

Determining the Impact of COVID-19 on End-of-Life Experiences of Family Caregivers for People Living With Dementia

COVID-19 has impacted all of our lives, but the population most at risk are older adults. Family caregivers (FCGs) for people living with dementia (PLWD) face challenges in providing care, which are compounded with the introduction of COVID-19 public health policies. The purpose of this study was to examine the experiences of FCGs where the PLWD died during the COVID-19 pandemic. FCGs were invited to participate in an online survey to examine their caregiving experiences during the COVID-19 pandemic, with the option of participating in a follow-up focus group. Sixteen FCGs whose family members with dementia died during the pandemic participated in the survey. A follow-up focus group was conducted to further examine how COVID-19 policies impacted their role as a caregiver in long-term care (LTC) and affected their ability to grieve. The results of the survey and focus group suggest that a lack of role clarity and inadequate communication channels between the FCG and LTC due to COVID-19 increased the strain FCGs faced during end-of-life care. At the end of life, public policies, such as reduced or no visitation, led to feelings of inadequacy and regret. Several participants also expressed appreciation for completing Advanced Care Planning documentation prior to COVID-19. Based on these results, policymakers can help ease the increased turmoil faced by FCGs during end-of-life care in future public health emergencies by involving FCGs of PLWD in the decision-making process. The completion of Advanced Care Planning documentation can also ease the burden FCGs may experience during end-of-life care.

Resources and Services for Family Caregivers in the Time of COVID-19

COVID-19 has led to increased burden on family caregivers (FCGs) for people living with dementia (PLWD), while simultaneously limiting the resources available to them. Our study surveyed Alberta, Canada FCGs to assess their needs and generate recommendations to inform policies about care access, resources, and agency supports. We conducted a mixed methods study using a sequential triangulation design (QUANTITATIVE + qualitative). Our Community Advisory Committee was involved in all stages of study planning, execution, and dissemination. Survey results informed the qualitative data collected from focus groups with FCGs. A total of 230 FCGs participated in the survey, with an average age of 59. The average age of PLWD was 75. The majority were women (77%), 46% were spouses and 41% were adult children. Respondents reported feeling more isolated (69%), more strain (66%) and decreased quality of life (55%) compared to pre-pandemic. Resource use by FCGs decreased from an average of 5 resources pre-pandemic to 1.6 during COVID-19. Services including day programs and home care were no longer available or reconfigured, leading to greater strain and heightened need for respite, which was also unavailable. Focus groups highlighted that system navigation and accessing services during COVID-19 was overly burdensome, leaving FCGs feeling abandoned by the system. FCGs reported an increase in caregiving responsibility and less access to services resulting in PLWD experiencing a decline in wellness and function. As such: 1) resources should be consistently available for FCGs and 2) FCGs require clear, correct, and concise information about COVID-19.

The Challenges of Being a Family Caregiver During the COVID-19 Pandemic in Canada

The COVID-19 pandemic has impacted all of our lives, but the population most at risk are older adults. Canadians over the age of 60 account for 36% of all COVID-19 cases but 95% of the deaths, and over two-thirds of ICU admissions. Older adults with chronic health conditions are especially at risk. Prior to COVID-19, family caregivers (FCGs) for older adults were managing their caregiving duties at the limits of their emotional, physical and financial capacity. As such, FCGs need special consideration during these times of uncertainty to support them in their role and enable the continuation of care for their older adult family members. This symposium will report on independently conducted studies from across Canada that have examined how the pandemic and associated public health measures have influenced resource utilization by FCGs and the older adults for whom they provide care. McAiney et al’s study examines the deleterious effect of reduced services on community dwelling FCGs and the wellbeing of their family member with dementia. Parmar & Anderson examined the effect of pandemic restrictions on FCGs of frail older adults and found they were experiencing increased distress and decreased wellbeing. Flemons et al report on the experiences of FCGs managing caregiving without critical services and the effect of restrictive visiting policies and the well-being of the caregiving dyad (FCGs and family member with dementia). Finally, McGhan et al will share how FCGs evaluated the efficacy of public health measures and the public health messaging about the pandemic.

Public Health Messaging and Measures During COVID-19: The Experiences of Family Caregivers

To mitigate the effects of COVID-19, Health Ministries across Canada have enacted numerous public health measures. Our mixed methods study examined the effect of COVID-19 related public health messaging and measures for family caregivers (FCGs) of people living with dementia (PLWD). Of the 230 FCGs completing the survey, most frequently used information sources were television, family/friends, and websites. FCGs over 60 more often used television, newspaper and radio versus websites and social media. FCGs rated public health messaging as good-excellent (64%) especially messaging around the disease spread, symptoms, and finding information. 46% believe the restrictions in long-term care facilities went beyond necessary with 97% reporting restrictions have negatively impacted them. 84% were willing to undertake personal protective equipment and infection control training to ensure continued access to PLWD. Focus groups highlighted concerns about continued access to PLWD, quality of care provision, and increased social isolation’s impact on dementia progression.

COVID-19 and Long-Term Care: the Essential Role of Family Caregivers.

BACKGROUND: Those most at risk from severe COVID-19 infection are older adults; therefore, long-term care (LTC) facilities closed their doors to visitors and family caregivers (FCGs) during the initial wave of the COVID-19 pandemic. The most common chronic health condition among LTC residents is dementia, and persons living with dementia (PLWD) rely on FCGs to maintain their care provision. This study aims to evaluate the impact of visitor restrictions and resulting loss of FCGs providing in-person care to PLWD in LTC during the first wave of the COVID-19 pandemic. METHOD: An online survey and follow-up focus groups were conducted June to September 2020 (n=70). Mixed quantitative (descriptive statistics) and qualitative (thematic analysis) methods were used to evaluate study data. RESULTS: FCGs were unable to provide in-person care and while alternative communication methods were offered, they were not always effective. FCGs experienced negative outcomes including social isolation (66%), strain (63%), and reduced quality of life (57%). PLWD showed an increase in responsive behaviours (51%) and dementia progression. Consequently, 85% of FCGs indicated they are willing to undergo specialized training to maintain access to their PLWD. CONCLUSION: FCGs need continuous access to PLWD they care for in LTC to continue providing essential care.