Living Through the Pandemic: The Voices of Persons With Dementia and Their Caregivers

Abstract

Social-distancing guidelines from the COVID-19 pandemic have potential to compound morbidity in persons with dementia (PwD) and increase caregiver burden. This qualitative study utilized semi-structured interviews between August-November 2020 to explore the impact of COVID-19 on PwD and caregivers. Conventional qualitative content analysis was used. Inter-coder reliability was confirmed using the kappa coefficient. Twenty-five interviews were completed with four themes emerging: disruption of socialization, fear and risk mitigation, coping strategies, and caregiver burden. Participants described how lack of socialization and confinement led to feelings of loneliness, depression, and worsening memory problems. Caregivers reported increased burden and heightened feelings of responsibility for their loved one. Increased isolation imposed by the pandemic has a detrimental impact on PwD. Further work is needed to develop interventions to support PwD and other cognitive impairments and caregivers during the pandemic and when in-person socialization is not possible.

Two Years of COVID-19: Understanding Impact and Implications for the Mental Health of Older Adults

“…Caregivers of older adults, especially of PwD, faced a profound loss of resources and services and increased care responsibilities. They reported increased burden, often needing to set aside their own health needs in the face of increased caregiving demands 20 . This burden may be particularly severe for subgroups such as informal caregivers (ICs) 13 .…”

Health-related quality of life in caregivers of community-dwelling individuals with disabilities or chronic conditions. A gender-differentiated analysis in a cross-sectional study

“…The SARS-CoV-2 disease 2019 pandemic has contributed additional challenges for family caregivers. Domiciliary confinement, quarantine, social isolation, difficulty in providing access to health services and the discontinuation of social support services have been the main factors that have decreased the functional ability of disabled people and have increased the burden and complexity of their daily care, negatively impacting the health and quality of life of caregivers [ 22 – 28 ].…”

“…These concerns are described in other studies, along with limited opportunities to maintain their personal well-being and the need to modify the caregiving approach by assuming new responsibilities and managing a new caregiving routine [ 25 ]. In general, caregivers report an increase in depressive symptoms, stress, anxiety and burden [ 22 , 23 , 26 , 27 , 29 , 30 ].…”

The Neuropsychiatric Changes After COVID-19 Quarantine in Patients With Cognitive Impairment and Their Caregivers in Chongqing, China: A Cohort Study

“…Coherent studies on the status of patients with dementia or memory disorders were carried out in countries worldwide, such as India, Spain, the United States, and Argentina. However, most of these studies adopted semi-structured interviews or self-designed questionnaires ( Cohen et al, 2020 ; Goodman-Casanova et al, 2020 ; Rajagopalan et al, 2021 ; Rising et al, 2021 ) that may lack wide applicability and representativeness. In one of our previous studies, we interviewed 787 patients and their caregivers using widely used assessment scales such as neuropsychiatric inventory (NPI), Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder Scale (GAD-7), and Relative Stress Scale (RSS).…”