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.

Keywords: dementia; help-seeking; iSupport; informal caregivers; training interventions.

Figure 1

The virtuous cycle of seeking help. * person with dementia.

Figure 2

Profile of the dementia case manager.