Caring for Dementia Caregivers in Times of the COVID-19 Crisis: A Systematic Review

Abstract

Dementia is progressive and deteriorates during the progression of the disease affecting several millions of older people worldwide. The burden of caring for people with dementia is enormous and caregivers face serious psychological challenges from their caregiving roles. Dementia caregivers are exposed to psychological distresses such as stress, anxiety and depression. While there is robust literature on caregiver burden and their psychological effects, there are gaps in current knowledge about how best caregivers get the support that they need in order to prevent themselves from becoming the hidden victims, especially in unprecedented times such as the coronavirus 2019 (COVID-19) crisis. The aim of this paper was to apply the preferred reporting items for systematic reviews and meta-analysis (PRISMA) guidelines to conduct a systematic review of psychological and psychosocial outcomes. Targeted outcomes included stress, anxiety, depression, mental wellbeing, caregivers' support, psychosocial and psychological interventions. We searched for relevant articles using PubMed, Google Scholar, Science Direct, and ProQuest. We used search terms from the keywords to identify publications that were most relevant to our questions. Eight papers were finally selected and reviewed. Findings showed that dementia caregivers are mostly informal/family caregivers, mostly female and lack the knowledge about dementia. Further, findings revealed that dementia caregivers can be isolated from mainstream society. Consequently, they suffer from care burden and other psychological problems. Dementia caregivers can benefit from internet-based or web-based interventions. Although there are inconsistencies in methodological approaches of the various interventions, the interventions are effective. Findings further revealed that dementia caregivers are isolated from mainstream society due to the nature of their caregiving roles, and can access effective psychosocial and psychological interventions via the internet-based or web-based especially in unprecedented times such as the COVID-19 crisis.

The impact of dementia daycare service cessation due to COVID‐19 pandemic

“… 19 , 20 , 21 , 22 In addition, case managers at the daycare centres should provide continual support to family caregivers during the pandemic. 23 , 24 , 25 , 26 According to the Jockey Club Centre for Positive Ageing (JCCPA), one of the participating centres of this study, weekly telephone calls or video phone calls by case managers to the caregivers provided emotional support and helped reduce dementia caregiving stress by providing timely advice on behavior management at home.…”

The Experiences of People with Dementia and Informal Carers Related to the Closure of Social and Medical Services in Poland during the COVID-19 Pandemic—A Qualitative Study

“…Those with lower levels of resilience were even more liable to experience increased mental health symptoms such as anxiety and depression [ 31 ]. Although evidence highlights the negative consequences of the pandemic on the informal carer’s role, for others, it has reinforced their existing isolation from the mainstream society as a consequence of their caregiving role [ 32 , 33 ]. For some, the pandemic, which has resulted in spending more time with their relatives, has potentially enriched their relationship [ 30 , 34 ].…”

Positive Aspects of Dementia Caregiving During the COVID-19 Pandemic

“…Research into psychological effects of the COVID-19 pandemic has been prolific, albeit focused on negative effects of enforced isolation and other restrictions (e.g., Douglas, Katikireddi, Taulbut, McKee, & McCartney, 2020;Marroquín, Vine, & Morgan, 2020), especially as they relate to dementia caregiving (Aledeh & Adam, 2020;Canevelli et al, 2020;Cohen, Russo, Campos, & Allegri, 2020). There is much to be learned by examining positive experiences, strengths demonstrated, and lessons learned by informal caregivers (ICs).…”

“…Despite these positive aspects to caregiving, the unique circumstances of COVID-19 restrictions mean many caregivers experienced considerable upheaval to their usual caregiving arrangements (Aledeh & Adam, 2020), including sudden unavailability of paid caregivers (PCs) (Savla et al, 2020), almost immediate inaccessibility of residential aged care facilities (RACFs; Dementia Australia, 2020), and restriction of typical supports and methods of maintaining well-being (Canevelli et al, 2020). In this manuscript, RACF refers to any paid residential setting, including high-and lowcare facilities and independent living units, that involves paid staff members whose role includes monitoring the safety and welfare of residents.…”