"It Isn't the Same": Experiences of Informal Caregivers of Older Adults Enrolled in a Home-Based Senior Care Program During COVID-19.

The coronavirus disease 2019 (COVID-19) pandemic placed new strains on informal caregivers, who are already vulnerable to negative psychosocial effects due to demands of the caregiving role. The current study aimed to explore the early impact of COVID-19 on caregivers living with and apart from care recipients. Semi-structured qualitative interviews with seven cohabitating and 10 distanced caregivers of patients in a home-based primary care program were conducted from April to November 2020. A framework matrix was used to identify patterns in caregiver experiences. Cohabitating and distanced caregivers reported shared concerns about COVID-19 and unique concerns dependent on cohabitation status. Cohabitating caregivers reported financial worries, care recipients with dementia being unable to understand restrictions, and concerns about community business changes. Distanced caregivers reported communication challenges with cognitively impaired care recipients and challenges with visitation policies. During pandemics, caregivers' clinical and policy support needs may differ depending on their place of residence relative to care recipients. [Journal of Gerontological Nursing, 49(3), 19-26.].

Caregiver Experience of Tele-dementia Care for Older Veterans.

BACKGROUND: For the 5 million persons living with dementia (PLWD) in the USA, telemedicine may improve access to specialty care from their homes. OBJECTIVE: To elicit informal caregiver perceptions of tele-dementia care provided during COVID-19. DESIGN: Qualitative, observational study using grounded theory. PARTICIPANTS: Informal caregivers aged 18 + who cared for an older adult who received tele-dementia services at two major VA healthcare systems participated in 30-60-min semi-structured telephone interviews. INTERVENTIONS: Interviews were designed using Fortney's Access to Care model. MAIN MEASURES: Thirty caregivers (mean age = 67, SD = 12, 87% women) were interviewed. KEY RESULTS: Five major themes were (1) Tele-dementia care avoids routine disruption and pre-visit stress; (2) Transportation barriers to in-person visits include not only travel logistics but navigating the sequelae of dementia and comorbid medical conditions. These include cognitive, behavioral, physical, and emotional challenges such as balance issues, incontinence, and agitation in traffic; (3) Tele-dementia care saves time and money and improves access to specialists; (4) Tele-dementia facilitated communication between caregiver and provider without hindering communication between PLWD and provider; and (5) Caregivers described ideal future dementia care as a combination of virtual and in-person modalities with in-home help, financial and medical support, and dementia-sensitive caregiver access. Caregivers interviewed saved 2.6 h ± 1.5 h (range: 0.5 to 6 h) of travel time. Multiple caregivers described disruption of routines as difficult in PLWD and appreciated the limited preparation and immediate return to routine post telemedicine visit as positives. CONCLUSIONS: Caregivers found tele-dementia care convenient, comfortable, stress reducing, timesaving, and highly satisfactory. Caregivers would prefer a combination of in-person and telemedicine visits, with an opportunity to communicate with providers privately. This intervention prioritizes care for older Veterans with dementia who have high care needs and are at higher risk for hospitalization than their same age counterparts without dementia.

Caregiving Intensity and Psychosocial Impact of COVID-19 in Dementia and Non-Dementia Caregivers

COVID-19 has adversely impacted the well-being of informal caregivers (CG) due to infection risk, changes to the home environment, and changes to resource availability. CG of persons living with dementia (PLWD) may be especially vulnerable due to the intensity of care provided. We compared CG activities and well-being among CG who did and did not care for PLWD during COVID-19. We conducted an anonymous online survey from April 2020-present. Respondents self-identified as 18+ years and CG to a child or adult with mental health or medical conditions. CG answered questions regarding hours of care provision and caregiving activities, and completed measures of CG burden (Zarit Burden Inventory-4), loneliness (UCLA Loneliness Scale), depressive symptoms (Patient Health Questionnaire), and anxiety (Generalized Anxiety Disorder-2). Of the 258 respondents within the United States, 86 cared for PLWD (33%;88% female;56±12 years) while 172 did not (66%;87% female;49±14 years). Compared to non-dementia CGs, more CGs of PLWD provided 40+ hours of caregiving/week (36% vs. 49%, p<.05), performed more caregiving activities (8.5 vs. 10.5, p<.01), and assisted with more activities of daily living (55% vs. 73%, p<.01). Compared to non-dementia CG, more dementia CG reported CG burden (53% vs. 67%;p<.05) and loneliness (7.3 vs. 9.1, p<.05). No differences in depressive symptoms or anxiety were found. Results suggest that existing needs of CG of PLWD may be exacerbated by the stressors and concerns of the pandemic, necessitating higher levels of support.