Carers’ experiences of dementia support groups: A qualitative exploration

Abstract

Dementia rates are growing (WHO, 2017) and as dementia is associated with a loss of independence, carers are required. Caring for a dementia patient places great demands on the carer’s resources (WHO, 2017). Previous research has indicated that whilst carers are at increased risk of poor mental and physical health (Diener & Chan, 2011; Mahoney, Regan, Katona, & Livingston, 2005; Mausbach, Patterson, Rabinowitz, Grant, & Schulz, 2007), there are some effective protective measures against these increased risks (Cooper et al., 2012; Elvish, Lever, Johnstone, Cawley, & Keady, 2013; Kaufman, Kosberg, Leeper, & Tang, 2010). Aims This study aimed to evaluate a dementia support group, in relation to protective measures including social and emotional support, in a real‐life rural setting from a carers’ perspective. Method Fourteen informal carers of dementia patients were interviewed about their experiences of attending dementia support groups. The interviews were transcribed verbatim and subject to thematic analysis. Findings The analysis showed that attendance to the support group was associated with subjective well‐being and that social support provided by the group was both stimulating and supportive for the carers. Participants valued the opportunity to share their experiences of being a carer with fellow group members and finding out about resources. Frequently, participants reported that the time period surrounding their loved one receiving a diagnosis of dementia was traumatic and they needed time to adjust to their new circumstances before attending a support group. Conclusions Implications for wider employment of support groups as a format of support for carers are discussed.

The Experiences of Informal Caregivers of People With Dementia in Web-Based Psychoeducation Programs: Systematic Review and Metasynthesis

“…Previous studies have found that web-based programs can support working caregivers to achieve a balance between work and caregiver demands, supporting them through web-based peer interactions that save both time and money [ 55 , 56 ], but this does require an individual’s resolution. According to West and Hogan [ 57 ], regular support group attendance was associated with members’ perception of support from the group, subjective well-being, compromises they made, and care responsibilities. Moreover, according to our review, using a web-based program depends on an individual’s perception of how useful it is to address their needs.…”

“…A forum was convened in 1 study to ascertain barriers to successful web-based group meetings and made recommendations, for example, that groups be arranged according to the similarity of caregivers’ experience, have clear meeting agendas, and consider participants’ diversity [ 60 ]. Other studies showed that the positive impact of support groups depended on peer interactions and how well groups were organized [ 57 , 61 ]. The caregivers in our review expressed concerns about poor peer interaction, lack of discussion topics, and lack of equal opportunities to contribute during group meetings.…”

Information seeking amongst informal caregivers of people with dementia: a qualitative study

“…Participants in this study found that informal sharing of first-hand knowledge of caring for a PLwD helped to plug gaps in professional knowledge. Connections with other informal carers were highly regarded as enabling practical and empathetic information sharing, in agreement with Donnellan et al (2017), Hole and Harrison Dening (2019) and West and Hogan (2020). However, lack of awareness of support groups, or access difficulties arising from the frailty of PLwD or, in the case of SCs, difficulties in accessing sessions taking place during the working week, prevented access for some.…”

Needs of carers participating in support groups and caring for a person with dementia: A focused ethnographic study

“…Support groups are viewed by the public health care system as a source to fulfill carers’ needs for information and social and emotional support, exchanging caring experiences, reduce caregiver stress, and motivate carers to continue to provide care for the person with dementia living at home (Lauritzen et al, 2015; Keyes et al, 2016; Willis et al 2017; West and Hogan, 2020). However, Mason et al (2005) claim that support group participation hardly addresses carers’ need for information about caregiving that can be operationalized at home.…”

“…At the same time, there is a wide variation of what defines a support group; it can be led by health professionals or by peers and can vary from face-to-face to online meetings. Furthermore, there seems to be no common ground in research or public health care systems about the establishment of the support groups required to fulfill carers needs (Keyes et al, 2016; Willis et al 2017; West and Hogan, 2020). Research exploring carers’ experiences of fulfilling their subjective needs for information and social and emotional support through support group participation is important, because for a support group to be a meaningful activity that can motivate carers to continue to provide care, it is necessary to gain an understanding of the phenomenon from carers’ own perspectives to provide a service that benefits them.…”