Video Conferencing Peer Support and Rarer Forms of Dementia: An Exploration of Family Carers’ Positive Experiences

Abstract

Little is known regarding the nuanced experiences of family carers for people living with rare dementias (PLWRD), with no known literature exploring their positive experiences of caring discussed within peer support group settings. This article explores family carers of PLWRD’s positive experiences reported in video conferencing peer support groups. Six peer support group sessions involving a total of nine participants were qualitatively analysed using thematic analysis, guided by the conceptual framework of positive aspects of caring (CFPAC) (Carbonneau et al., 2010). Six themes were identified: (1) Protecting, maintaining, enjoying and finding strength in their relationship with the PLWRD; (2) Using tools and resources in response to challenges; (3) Positive impact of interactions and others’ responses to the dementia; (4) Overcoming barriers to taking a break while maintaining their wellbeing, (5) Maintaining positive outlooks and showing psychological resilience in adversity; and (6) Attributing meaning to the caring role. This article highlights family carers of PLWRD’s positive psychological, physical and social resources, balanced against the challenges of caring and maintaining their wellbeing, and identifies ways of promoting family carers’ positive caring experiences and resources within healthcare and supportive settings.

Patient Organizations’ Digital Responses to the COVID-19 Pandemic: Scoping Review (Preprint)

“…The majority of articles addressing group activities reported that participants in online groups experienced interpersonal aspects similar to those in face-to-face groups, e.g., a sense of togetherness. This observation supports similar trends identified in general findings on the conduct of various online support group formats, that have emerged independently of the COVID-19 pandemic [41][42][43]. Consequently, online groups may indeed serve as adequate alternatives to face-to-face group activities of POs.…”

A systematic review of digital access to post‐diagnostic health and social care services for dementia

“…As with many of the studies highlighted in this systematic review, Gerritzen et al 90 also noted the advantages of online groups compared to in-personspecifically not having to travel and the greater potential to develop ad hoc relationships outside of support group meetings. Rapley et al 91 also demonstrated positive responses when exploring the use of videoconferencing for peer support among family carers of people with rarer dementia. Across interviews with nine carers, participants emphasised that digital peer support helped them to maintain their relationship with their cared for person, demonstrate and acknowledge compassion from others, take time to have a personal life and balance this alongside caring, as well as being cognisant of the role they are in and maintaining positivity in it.…”