A mismatch between supply and demand of social support in dementia care: a qualitative study on the perspectives of spousal caregivers and their social network members

Abstract

Background:Access to social support contributes to feelings of independence and better social health. This qualitative study aims to investigate multi-informant perspectives on informal social support in dementia care networks.Methods:Ten spousal caregivers of people with dementia (PwD) completed an ecogram, a social network card and a semi-structured interview. The ecogram aimed to trigger subjective experiences regarding social support. Subsequently, 17 network members were interviewed. The qualitative analyses identified codes, categories, and themes.Results:Sixth themes emerged: (1) barriers to ask for support; (2) facilitators to ask for support; (3) barriers to offer support; (4) facilitators to offer support; (5) a mismatch between supply and demand of social support; and (6) openness in communication to repair the imbalance.Discussion:Integrating social network perspectives resulted in a novel model identifying a mismatch between the supply and demand of social support, strengthened by a cognitive bias: caregivers reported to think for other social network members and vice versa. Openness in communication in formal and informal care systems might repair this mismatch.

Optimizing access to and use of formal dementia care: Qualitative findings from the European Actifcare study

“…We found that it is important to involve the social network, as it can play an important role in assisting with care tasks. Previous research has shown that informal carers often feel reluctant to ask their social network for support (Dam, Boots, van Boxtel, Verhey, & de Vugt, ). Healthcare professionals should pay attention to help carers to motivate and mobilise their social network and decrease barriers to ask for support, for example through family meetings.…”

Exploring perspectives of young onset dementia caregivers with high versus low unmet needs

“…Caregivers are often hesitant to ask for help because they are afraid of burdening others or assume that people are reluctant to help. However, people around them are actually often willing to provide support but do not know how they can contribute or are afraid to violate their privacy or stigmatize the situation (Dam, Boots, Verhey, Boxtel and de Vugt, in press). Therefore, it is important that caregivers express their needs and experiences.…”

Implementation and feasibility considerations of an avatar‐based intervention for military family caregivers

“…There has been much research suggesting the beneficial implications for social support in both military and caregiver populations (Dam et al, ; S. Wilcox, ). Dam, Boots, van Boxtel, Verhey, and de Vugt () found multiple themes emerging related to supply and demand of social support among caregivers, including barriers and facilitators in asking for help, barriers and facilitators in offering support, mismatch between support supply and demand, and openness to repair the supply‐demand imbalance. Challenges to consider include maintaining connections beyond the intervention.…”