The psychosocial health, experiences and needs of older adults and care partners during the first surge of the COVID-19 pandemic: a mixed-methods study (original) (raw)
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Journal of Clinical Medicine
COVID-19 has caused a public and international health emergency, leading to isolation and social distancing. These restrictions have had a significant impact on the caregivers of people with dementia, increasing the burden of patient management. The purpose of this study was to investigate the stress perceived by caregivers of patients with Alzheimer’s disease (AD) during the pandemic. We used a cross-sectional survey design to evaluate the caregivers’ psychological responses and coping strategies. Eighty-four caregivers of patients with a diagnosis of AD were involved in this study by completing an online questionnaire. They presented a high perception of stress (the Perceived Stress Scale mean ± DS: 33.5 ± 4.5), and their high burden in caring was mainly related to physical difficulties (Caregiver Burden Inventory–Physical Burden mean ± DS: 15.0 ± 2.1) and perception of loss of time (Caregiver Burden Inventory–Time-dependence Burden mean ± DS: 16.5 ± 1.4). Moreover, caregivers per...
2021
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 ...
2021
We interviewed people with dementia and carers from the IDEAL cohort to find out how the COVID-19 lockdown and continuing restrictions affected those living with dementia. Some people with dementia coped well, while others coped with difficulty or were only just coping. The additional stress of COVID-19 exacerbated pre-existing coping difficulties. For many, social isolation increased anxiety. Some felt that lack of activity or lack of social contact caused a decline in their abilities to manage everyday tasks. Confusion about COVID-19 rules or difficulty remembering what to do led to anxiety when leaving the house. People felt that members of the public might not understand their particular needs. While some carers felt they were coping well, others experienced stress when having to leave the home because the person with dementia might not be safe if left alone. Some experienced increased strain in the caring relationship compounded by an uncertainty about future availability of re...
Journal of Family Nursing
Family caregivers of persons living with dementia often experience challenges to their health and quality of life related to their caregiving role. The COVID-19 pandemic added substantially to the responsibilities of family caregivers, potentially putting them at greater risk of poor health outcomes and impeded quality of life. To better understand the impact of the pandemic on the experiences of family caregivers, a multimethods study was conducted. Family caregivers of persons living with dementia were invited to complete a cross-sectional survey and a subset of survey respondents were invited to participate in focus groups for added insight. A total of 161 caregivers responded to the survey and 30 participated in the focus groups. Qualitative data from focus groups were used to elucidate deeper insight into quantitative findings from the survey. Findings reflect that the pandemic affected family caregiver health and wellness, access of care and resources, identity, and resilience.
Innovation in Aging
Background and Objectives The coronavirus disease 2019 (COVID-19) pandemic introduced unprecedented threats and disruptions for caregivers of people with dementia living in residential long-term care (LTC) facilities. Qualitative and cross-sectional studies have reported substantial negative effects of the pandemic on dementia caregivers’ well-being, but little to no prospective research has examined the impact of COVID-19 on caregiver well-being using pre-pandemic assessments. The present study used longitudinal data from an ongoing randomized controlled trial of a psychosocial intervention to support family caregivers whose relatives had entered LTC. Research Design and Methods Data collection began in 2016 and continued through 2021. Caregivers (N = 132) completed up to 7 assessments measuring their depressive symptoms, self-efficacy, and burden. Results Latent growth curve models testing preregistered hypotheses revealed no significant effects of the pandemic on caregiver outcom...
COVID-19 Pandemic and the Mental Health of Caregivers of the Elderly With Chronic Diseases
Iranian Rehabilitation Journal
Objectives: The social support of caregivers is fundamental, and their quality of life, mental health, and the burden of caring are related to the social support they receive during their interaction with people. Because the coronavirus pandemic and related quarantine have affected people’s participation and social support, the caregivers’ lifestyle has changed, and they have become more isolated and lonely. This study aims to investigate the mediating role of the burden of care in the relationship between social support and mental health of family caregivers of elderly Iranians with chronic diseases of the nervous system during the coronavirus pandemic. Methods: We recruited a sample of 249 family caregivers of the elderly with Alzheimer, Parkinson, and stroke. The study data were collected by electronic questionnaires of perceived social support of Zimet, Novak care burden, and Goldberg mental health questionnaire. The obtained data were analyzed using the Pearson correlation and ...
Impact of COVID-19 on Dementia Caregivers and Factors Associated With their Anxiety Symptoms
American Journal of Alzheimer's Disease & Other Dementiasr, 2021
Little is known about the family experience of caregiving for persons living with dementia (PLWD) at home during the COVID-19 pandemic. The purpose of this study was to examine the influence of COVID-19 on concerns of current family caregivers of PLWD. Study participants were recruited from the parent study, Healthy Patterns Clinical Trial (NCT03682185). Data was collected from 34 caregivers via semi-structured telephone interviews. Over 70% of the study participants reported worrying about spreading COVID-19 to the PLWD, 41% reported they had taken on additional caregiving duties for others in their family since COVID-19, and 62% reported one or more anxiety symptoms. Dementia caregivers who reported anxiety symptoms reported lower scores on functional independence of their care recipients compared to dementia caregivers who did not report anxiety symptoms ( p=0.036). Health care professionals should be alert to the concerns expressed by dementia caregivers for their well-being dur...
A scoping review of COVID-19 experiences of people living with dementia
Canadian Journal of Public Health
Objectives Compared with the general population, people living with dementia have been unequivocally affected by the COVID-19 pandemic. However, there is a paucity of knowledge on the COVID-19 impact on people with dementia and their care partners. The objective of this scoping review was to synthesize the existing literature on the COVID-19 experiences of people with dementia and their care partners. Methods Following Arksey and O’Malley’s scoping review framework, we searched five electronic databases (Scopus, PubMed, CINAHL, EMBASE, and Web of Science) and an online search engine (Google Scholar). Inclusion criteria consisted of English-language articles focusing on the COVID-19 experiences of people with dementia and their care partners. Synthesis Twenty-one articles met our inclusion criteria: six letters to the editor, seven commentaries, and eight original research studies. In the literature, five main themes were identified: (i) care partner fatigue and burnout; (ii) lack of...
Gerontologist, 2021
Background and Objectives: Even before the COVID-19 pandemic, older adults with cognitive impairment living alone (an estimated 4.3 million individuals in the United States) were at high risk for negative health outcomes. There is an urgent need to learn how this population is managing during the pandemic. Research Design and Methods: This is a qualitative study of 24 adults aged 55 and older living alone with cognitive impairment from diverse racial/ethnic backgrounds. Participants' lived experiences during the pandemic were elicited via 59 ethnographic interviews conducted over the phone either in English, Spanish, or Cantonese. Using a qualitative content analysis approach, interview transcripts were analyzed to identify codes and themes. Results: Qualitative analysis of transcripts revealed 5 themes: (a) fear generated by the pandemic, (b) distress stemming from feeling extremely isolated, (c) belief in misinformation, (d) strategies for coping during the pandemic, and (e) the importance of access to essential services. Discussion and Implications: This pandemic put a spotlight on the precarity and unmet needs of older adults living alone with cognitive impairment. Findings underscore the need to expand access to home care aides and mental health services for this population.
Caregiving for Dementia Patients during the Coronavirus Pandemic
Journal of Clinical Medicine
The coronavirus pandemic has had a global impact on both mental and physical health. Caregiving has become more difficult during this time due to the quick spread of this respiratory disease, dread of the unknown, congested hospitals, and many restrictions, particularly for people with multiple comorbidities. We aimed to assess the impact of this pandemic on a group of caregivers of patients with dementia and their needs during this time. The study’s findings indicate that females assumed the role of the caregiver more often than men (88.5% of the participants) and scored lower on the life quality scale. The most often issue encountered during the pandemic was difficulty in accessing health care facilities (36%). Participants with a higher education level scored better in the physical (24.67, p = 0.01 and 24.48, p = 0.01) and mental health (20.67, p = 0.002; 19,82, p = 0.008) domains of the life quality test. The fear of COVID questionnaire showed a low level of concern in the categ...