A Multiple Stakeholder Perspective on the Impact of COVID-19 on Dementia Care

Abstract

The aim of this study was to describe the impact of the COVID-19 pandemic on dementia care from a multiple stakeholder perspective. We used a multi-method design, with a cross-sectional survey followed by focus groups/interviews. Surveys were completed by people living with dementia (n = 27), family caregivers (n = 161), and health and social care professionals (n = 77). A sub-sample (n = 55) participated in an interview or one of 9 focus groups. Surveys were analyzed with descriptive statistics and focus group/interview data were analyzed using a thematic approach. Participants reported an impact of COVID-19 on dementia care, including less access to care and resources for care. Telehealth and tele-support/education were reported to be effective alternatives to support care. Themes from the qualitative data about dementia care were: (1) planning and providing care, (2) making choices around risk and safety, (3) experiences of loss, and (4) technology and dementia care. The results of this study present opportunities to improve the quality of care through addressing inequities and identifying improved and innovative approaches to address social isolation and virtual care for this vulnerable population.

Caregiving for Older Adults With Dementia During the Time of COVID-19: A Multi-State Exploratory Qualitative Study

“…Communication difficulties with HCBS and institutional facilities undermined caregivers’ care access and oversight, eroded trust in medical facilities, and altered care decision-making. Our findings corroborate literature showing the pandemic worsened caregiver burden through loss of usual caregiving supports and interference with care quality monitoring (Simard & Volicer, 2020; White et al, 2022). Policy fluctuations and routine disruptions further complicated caregivers’ formal care oversight, making caregivers assume additional responsibilities, with greater risk of adverse health outcomes (Masoud et al, 2022).…”

“…Decreased physical and social activities can compound cognitive and physical decline and increase mortality (Simard & Volicer, 2020). Furthermore, COVID-19 exacerbated caregiver burden by worsening access to healthcare providers and causing loss of usual caregiving supports (White et al, 2022). Pandemic-related economic stresses like unemployment also threatened caregivers’ ability to provide care (Falk et al, 2021).…”

Using digital technologies to facilitate social inclusion during the COVID‐19 pandemic: Experiences of co‐resident and non‐co‐resident family carers of people with dementia from DETERMIND‐C19

“…Currently, qualitative research that specifically addresses this topic is scarce. The majority of studies examine, more broadly, the experiences of people with dementia and their carers during the pandemic and often note an increase in their use of digital technologies to engage with formal health and social care services 30–33 . Although Giebel et al 34 found that those unpaid carers and people with dementia that accessed digital support during this period reported these services to be of poorer quality and less effective than in‐person contact.…”

Caregiving for Dementia Patients during the Coronavirus Pandemic

“…Our findings suggest the need to implement specific programs for caregivers to learn “coping” skills, socialization, support groups, online interventions to reduce stress, anxiety and depression [ 37 , 44 , 45 , 46 ]. A rigorous examination is also required to detect caregivers with symptoms of anxiety, depression, or burnout, particularly in females and caregivers co-living with the patient where apparently the risk is higher [ 27 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 ].…”