“We’re all thrown in the same boat … ”: A qualitative analysis of peer support in dementia care

Abstract

Peer support is well established in fields such as the disability movement and mental health and is increasingly recognised as one way of enabling support by and for people with a diagnosis of dementia and their immediate carers. It was central to the implementation of the National Dementia Strategy (NDS) for England, when 40 demonstration sites were established. This mixed-methods study included in-depth qualitative interviews with people living with dementia (n = 101) and staff/stakeholders (n = 82) at 8 of the 40 sites. Data analysis was a five-stage process: coding framework developed (using 25 transcripts); further development of the framework (using a further 70 transcripts); development of emerging themes; modelling of themes and verification of models based on the entire data set. Peer support had positive emotional and social impact that was rooted in identification with others, a commonality of experience and reciprocity of support. There was also a contrast between the quality of peer support and support from professionals. This emphasises the significance of lived experience and promoting a strength-based approach to interpersonal support that is enabling and challenges a deficit approach to understanding dementia.

Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia

“…Söderhamn et al 2014Clare et al 2008Leung et al 2015;Toms et al 2015;Keyes et al 2016 Planning ahead for future impact of the condition with the aim of increased sense of control. Robinson et al 2015;Grand et al 2011;SCIE, 2015; Alzheimer's Association; Hellström & Torres, 2016 Adapting activity to capability Adapting capability to activity (and goals of activities), in order to feel that activities are manageable and successful.…”

Quantifying the benefits of peer support for people with dementia: A Social Return on Investment (SROI) study

“…Peer support is routinely advocated in national strategies and policy, such as the National Dementia Strategy (Department of Health, 2009), the Care Act (2014) and National Institute of Clinical Excellence (NICE) quality indicators (2013), and is recognised as a worthwhile community intervention for people with dementia and their carers. Several studies (Clarke et al, 2013;Keyes et al, 2016;Mason, Clare, & Pistrang, 2005) show that peer support can reduce isolation and loneliness associated with dementia and provide information and support on how to manage the condition to live well. People with dementia and their carers routinely say that they draw significant benefit from being able to talk to other people with dementia and their carers and to share practical advice and emotional support, which is shown to improve their overall wellbeing.…”

Behavioural Changes in Dementia and their Impact on Professional Caregivers: A Grounded Theory Approach

“…Notwithstanding, this detrimental effect might be also be mitigated through peer support. Interestingly, residents who report high levels of support from other residents seem to be less likely to exhibit depressive symptoms in similar contexts (Yeung, Kwok, & Chung, 2013) given that peer support has been identified as a fundamental factor for psychological wellbeing in dementia (Keyes et al, 2014;Yeung et al, 2013).…”

“…Clare et al (2008) explain how care staff's understanding of retained awareness in their residents, may assist them in responding to residents needs effectively -which could have an impact on the quality of relationship. Failure of both care staff and family understanding of dementia can result in negative impacts on the development of informed advanced care plans and can contribute to inadequate symptom management (Robinson et al, 2014).…”