Caregivers of people with dementia and mental health during COVID-19: findings from a cross-sectional study

Abstract

Background There is sparse evidence on the impact on vulnerable populations of the COVID-19 pandemic. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic. Methods We conducted an online cross-sectional survey with family carers of people with dementia between May and June 2020. We registered socio-demographic characteristics, and information about the relationship with the care recipient, dementia subtype, care inputs from others, and the need of care of the person with dementia. We measured caregiver burden with the Zarit Burden Interview (ZBI), psychological distress with the Depression, Anxiety and Stress Scale (DASS-21), and perceived isolation with the 3-item UCLA Loneliness Scale (UCLALS3). Results Caregivers (N =571) reported moderate to severe care-related burden (mean=54.30; SD=18.33), moderate anxiety symptoms (mean=10.04; SD=6.93), mild depressive symptoms (mean=11.79; SD=6.12) and mild stress (mean=12.95; SD=5.53), and 72.3% of participants reported to feel lonely. All scores were significantly more severe in Swiss compared to Italian caregivers (all p values<0.001). Conclusions We found that caregivers’ burden, anxiety symptoms, depression and perceived loneliness were marked during the first wave of the COVID-19 pandemic, in two severely hit bordering countries. Regional differences in the impact of the epidemic on caregivers could be due to contextual, societal, and cultural circumstances. As the pandemic endures, support to caregivers of people with dementia should be proportionate and tailored to needs and adapted to contextual factors.

Family Caregiving during the COVID-19 Pandemic in Canada: A Mediation Analysis

“…Despite these limitations, there are strengths. This study mirrors many other studies that demonstrated worldwide increases in caregiver anxiety, care work, financial difficulty, loneliness, and care work [ 23 , 24 , 25 , 26 , 43 , 78 , 81 , 83 , 84 ]. We used regression analysis and validated scales to examine the factors related to anxiety and then used mediation analysis to test hypotheses about the processes by which giving care can cause anxiety.…”

“…Loneliness and social isolation also increased as the result of public health physical and social distancing protocols [ 23 , 24 , 81 ]. Our findings indicate that the association between frailty and loneliness was also moderated by social loneliness.…”

Family caregivers’ concerns about advance care planning for home-dwelling people with dementia: a cross-sectional observational study in Japan

“…Furthermore, distribution of paper questionnaire may require obtaining the physical address of each member via some dementia-related organizations, which would challenge the protection of participants’ privacy. Online surveys with family caregivers of persons with dementia have been used previously in Japan [ 18 ] and other countries [ 19 ]. The study protocol was approved by the appropriate ethics review board and was conducted in accordance with the Helsinki Declaration of 1975 (as revised in 2013).…”

Examining the Impact of COVID-19 on People With Dementia From the Perspective of Family and Friends: Thematic Analysis of Tweets

“…More specifically, research-based evidence is needed to inform COVID-19 policies to help mitigate the impact of the pandemic on people with dementia and their family care partners. However, new publications on dementia continue to report findings primarily based on the early stages of the pandemic with little knowledge of the COVID-19 barriers over time [ 5 , 9 , 14 , 15 ].…”