Help-Seeking in Informal Family Caregivers of People with Dementia: A Qualitative Study with iSupport as a Case in Point

Abstract

Supportive measures and training interventions can improve the care of people with dementia and reduce the burden on informal caregivers, whose needs remain largely unmet. iSupport is an evidence-based online intervention developed by the World Health Organization to provide support and self-guided education to informal family caregivers of people with dementia. This qualitative study explored barriers and facilitators in the access and use of supportive measures for family caregivers of people with dementia living in Southern Switzerland (Ticino). We conducted five focus groups and explored experiences, beliefs, and attitudes toward seeking help (SH), and used thematic analysis to identify key themes. Participants (N = 13) reported a general reluctance to SH. We identified four main barriers to SH: high level of burden; sense of duty; fear of being misunderstood by others; and difficulty in reaching information. We also identified facilitators of help seeking behaviors and unveiled the need of caregivers to be assisted by a dementia case manager to facilitate access to support resources. Local services and interventions should be adapted to caregivers’ needs and expectations, with the aim of facilitating the acceptance of, access to, and service integration of existing and future support measures, including iSupport.

Impact of COVID-19 Pandemic on Caregivers of People with an Intellectual Disability, in Comparison to Carers of Those with Other Disabilities and with Mental Health Issues: A Multicountry Study

“…The results add voice to other research that has found the service closures during the pandemic had a negative impact on carers, leading to increased loneliness, declining mental health, and reduced feelings of wellbeing [ 9 , 22 , 31 , 42 , 43 ].…”

“…Research on experiences during the COVID-19 pandemic have consistently reported that informal carers experienced isolation, loneliness, and declines in physical and mental health and wellbeing [ 1 , 3 , 30 , 31 ]. Doody and Keenan’s [ 32 ] scoping review reported that, during the pandemic, people living with intellectual disability and their carers were particularly vulnerable to negative physical, social, and psychological impacts.…”

Predictors of Deterioration in Mental Well-Being and Quality of Life among Family Caregivers and Older People with Long-Term Care Needs during the COVID-19 Pandemic

“…These findings confirm the need for ongoing training for family/informal caregivers to improve access to services [40], increase well-being [41,42] and self-efficacy [43], and improve their QoL [44].…”

Culturally Adapting the World Health Organization Digital Intervention for Family Caregivers of People With Dementia (iSupport): Community-Based Participatory Approach

“…We prompted and collected suggestions for improvement, as also recommended by the WHO guidelines. In addition, we decided to expand our inquiry to caregivers’ attitudes toward support measures and help-seeking behaviors, which we have previously reported in detail elsewhere [ 40 ].…”

“…Data management and coding processing were facilitated by NVivo 12 software (Lumivero) [ 41 ]. Additional methodological details have been previously reported [ 40 ].…”