ABSTRACT
Background COVID-19 has been devastating for older adults, particularly residents in long-term care/retirement (LTC) homes. In an effort to curb the transmission of COVID-19, public health measures have been put in place in many LTC homes, including mask wearing, physical distancing, and visitor restrictions. As the pandemic passes the one-year mark, we are starting to understand the profound impacts of COVID-19 and the corresponding public health measures on persons living with dementia (PLWD) and their family care partners (CPs). This research is part of a larger study exploring the impact of COVID-19 on the wellbeing and social connections of PLWD and CPs. In this presentation, findings from qualitative interviews conducted with CPs of PLWD in LTC homes are shared. Methods The overall study used an intrinsic case study design, involving survey and interview data. Following completion of a survey, participants were invited to participate in an in-depth qualitative interview. Interviews were conducted by phone or online, transcribed verbatim, and analyzed using thematic analysis. Results Eighteen CPs were interviewed. The impact of visitor restrictions varied between LTC homes and changed over the course of the pandemic, which was extremely challenging for CPs. At homes with visitor restrictions, the inability to visit family members with dementia was described as stressful, unfair, and frustrating. CPs stressed the importance of being able to visit their relatives, and ensuring their family members had regular social interaction to support their physical, social and emotional wellbeing. Even when CPs could visit, masks and physical distancing made communication with some PLWD challenging. Visitor policies also influenced perceptions of care. Some CPs felt that the needs of their family members with dementia were being met by the home, while others weren?t sure because CPs weren?t in the homes to assist staff and provide support to their family members with dementia. Conclusion While COVID-19 and the pandemic restrictions have been difficult for all CPs of persons with dementia in LTC, for some it has been agonizing. Understanding these varied experiences can help inform the development of individually-tailored resources to better support the wellbeing of CPs.
ABSTRACT
COVID-19 public health measures have significantly impacted persons living with dementia (PLWD) and family caregivers (FCGs). Given the restrictions on in-person services, many PLWD were not able to access their usual supports and activities, resulting in FCGs stepping in to support exercise, leisure, socialization, spirituality, and activities of daily living. At the same time, FCGs’ own support networks were significantly reduced or no longer available. We conducted in-depth qualitative interviews with 20 FCGs of PLWD in the community to explore the impact of COVID-19 on their well-being. Data were analyzed using thematic analysis. Caregiving during COVID-19 was described as ‘draining’ and ‘stressful’, with the support needs of PLWD increasing at a time when fewer supports were available. Reaching out to others, using technology, and setting boundaries were strategies FCGs used to cope. Despite the considerable impacts of COVID-19, FCGs of PLWD demonstrated their resilience in supporting themselves and their PLWD.
ABSTRACT
COVID-19 has had a devasting impact on older adults in Canada, including persons living with dementia. This intrinsic case study sought to understand the perceptions of persons living with dementia regarding how COVID-19 has impacted their well-being. Ten persons living with dementia participated in in-depth qualitative interviews about their experience with COVID-19. Using thematic analysis, four themes were identified: (1) expressing current and future concerns; (2) social connections and isolation; (3) adapting to change and resilience through engagement and hope; and (4) we're not all the same: reflecting individual experiences of the pandemic. Results highlight that while COVID-19 contributed to isolation, concerns, and frustrations, persons with dementia also demonstrated adaptation and resilience. This study reinforced that persons with dementia and their responses to challenges are unique. Therefore, interventions to support persons with dementia must also be individualized to each person's abilities and circumstances.
ABSTRACT
The rapid emergence of COVID-19 has had far-reaching effects across all sectors of health and social care, but none more so than for residential long-term care homes. Mortality rates of older people with dementia in residential long-term care homes have been exponentially higher than the general public. Morbidity rates are also higher in these homes with the effects of government-imposed COVID-19 public health directives (e.g., strict social distancing), which have led most residential long-term care homes to adopt strict 'no visitor' and lockdown policies out of concern for their residents' physical safety. This tragic toll of the COVID-19 pandemic highlights profound stigma-related inequities. Societal assumptions that people living with dementia have no purpose or meaning and perpetuate a deep pernicious fear of, and disregard for, persons with dementia. This has enabled discriminatory practices such as segregation and confinement to residential long-term care settings that are sorely understaffed and lack a supportive, relational, and enriching environment. With a sense of moral urgency to address this crisis, we forged alliances across the globe to form Reimagining Dementia: A Creative Coalition for Justice. We are committed to shifting the culture of dementia care from centralized control, safety, isolation, and punitive interventions to a culture of inclusion, creativity, justice, and respect. Drawing on the emancipatory power of the imagination with the arts (e.g., theatre, improvisation, music), and grounded in authentic partnerships with persons living with dementia, we aim to advance this culture shift through education, advocacy, and innovation at every level of society.