A qualitative study of carers’ experiences of dementia cafés: a place to feel supported and be yourself

Abstract

BackgroundUnpaid, informal carers or caregivers play an important role in supporting people living with dementia but the role can be challenging and carers themselves may benefit from support. Alzheimer’s, dementia or memory cafés are one such form of support . These cafés are usually provided in the voluntary sector and are a place where people with dementia and those supporting them, usually family carers, can meet with others in similar situations.MethodsUsing semi-structured interviews, this qualitative study explored the experiences of 11 carers from five dementia cafés in and around London, England.ResultsThematic analysis resulted in the identification of four key themes. Cafés provide a relaxed, welcoming atmosphere where carers can go where they feel supported and accepted. Café attendance often brought a sense of normality to these carers’ lives. Carers and those they care for look forward to going and often enjoy both the activities provided and socialising with others. Other highlighted benefits included peer support from other carers, information provision and support from the volunteer café coordinators. Despite diversity in how the cafés were run and in the activities offered, there were many reported similarities amongst carers in the value ascribed to attending the cafés.ConclusionsDementia cafés appear to be a valuable, perhaps unique form of support for carers giving them brief respite from their caring role. Future research incorporating mixed methods is needed to understand the perspectives of those living with dementia.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-017-0559-4) contains supplementary material, which is available to authorized users.

A Dementia Café as a Bridgehead for Community-Inclusive Care: Qualitative Analysis of Observations by On-the-Job Training Participants in a Dementia Café

“…However, when considering the disease characteristics of dementia, in which forgetfulness is a central feature, the effect on people with dementia on a monthly basis may be limited. In fact, in recent research on the Alzheimer's café, although it was found to be effective for people with dementia and their families [15], it was mostly effective for the families [13,14]. On the other hand, it has been reported that a support group for people with dementia in the early stage held once a week for 9 consecutive weeks showed positive effects on people with dementia, but not on family members [21].…”

“…In the first theme, "Natural attendance of guests and coziness owing to the café setting," it was shown that a dementia café is similar to a usual café where citizens interact through having drinks such as coffee; this was also shown in reports of Alzheimer's and memory cafés [11,12,15]. The time spent in the café played a role in changing the perceptions of the disease that are difficult to face [14,15].…”

“…From this perspective, the cafés share many similar points. A qualitative analysis of participants in 5 cafés in England showed that, even though there the contents of the cafés differed, common effects were seen on people with dementia and their families [14]. Comprehensive services responding to dementia based on the thoughts of the coordinator and the knowledge of the staff may be more important than the specific management method.…”

Dementia Cafés as Hubs to Promote Community-Integrated Care for Dementia through Enhancement of the Competence of Citizen Volunteer Staff Using a New Assessment Tool

“…Dementia café staff have not been provided with vocational training and often learn what is required for their work on their own. Since the facility standards and staff abilities have not been clearly defined, research on the management styles and effectiveness of dementia cafés remains limited [6,[8][9][10][11]. However, these need to be established to advance the development of dementia cafés as a useful community resource.…”

Developing and implementing dementia policy in ireland

“…By talking to people going through similar experiences, personal, relatable information and advice can be shared. Dementia cafes have been identified as having the potential to be an important part of peer support for people with dementia and their carers, providing an environment where people can come together in an informal way to receive advice, social support and signposting (Dow et al, 2011;Greenwood et al, 2017).…”