Recovery colleges and dementia courses – a scoping survey

Lowen, Christine; Birt, Linda; West, Juniper

doi:10.1108/mhsi-08-2019-0024

Cited by 7 publications

(8 citation statements)

References 11 publications

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“…This may create more positive social-psychological environments ( 3 ). A UK scoping survey found that mental health organisations are incorporating dementia into Recovery College programmes ( 16 ). However, evidence from experiences of co-production with people with dementia in such programmes is scarce; only two published reports were found.…”

Section: Introductionmentioning

confidence: 99%

A Case Study of Co-production Within a Mental Health Recovery College Dementia Course: Perspectives of A Person With Dementia, Their Family Supporter and Mental Health Staff

West

Birt

Wilson

et al. 2022

Front. Rehabilit. Sci.

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BackgroundUndertaking co-production as a power-sharing way to improve mental health dementia services remains uncommon, suggesting opportunities to apply knowledge from lived experience of people with dementia, may often be missed. One barrier is stigma, assuming people with progressive cognitive impairment cannot manage this level of participation, support peers nor offer a “valid” perspective.PurposeThis paper shares knowledge gained from a service evaluation that explored various experiences of a person with dementia, their family supporter and mental health staff, involved in co-producing a course about “living well” with dementia, within a mental health Recovery College.DesignA qualitative, case study approach used semi-structured interviewing and inductive thematic analysis.FindingsCo-production activities generated a shared sense of positivity, pride and privilege, highlighting positive effects in breaking down the “them and us” barriers common in traditional healthcare professional-service user relationships. Each individual had both something to offer and something to gain during the process. Staff identified challenges in the co-production process; in that balancing all the voices during meetings could be complex at times, and the process overall required considerable time commitment.ConclusionTaking part in co-production at an appropriate level and with peer support is a relational activity seen to be valuable in powerfully, yet gently, challenging stigma and assumptions around dementia. Findings show that while the process of co-production requires time and dedication, there is overall value in involving people living with dementia both in co-production and in peer support. This provided a straightforward and beneficial means to inclusively improve post-diagnosis support and care quality within a memory service.

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Section: Introductionmentioning

confidence: 99%

A Case Study of Co-production Within a Mental Health Recovery College Dementia Course: Perspectives of A Person With Dementia, Their Family Supporter and Mental Health Staff

West

Birt

Wilson

et al. 2022

Front. Rehabilit. Sci.

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“…We found diversity among service user students, although some groups were underrepresented. Recovery Colleges are adapting to encourage engagement of these students, for example, coproducing more dementia courses (Lowen et al, 2019). A new form of Recovery College, "Discovery Colleges," are being developed for younger students (Hopkins et al, 2018).…”

Section: Discussionmentioning

confidence: 99%

Who uses recovery colleges? Casemix analysis of sociodemographic and clinical characteristics and representativeness of recovery college students.

Bowness¹,

Hayes²,

Stepanian³

et al. 2023

Psychiatric Rehabilitation Journal

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Objective: Recovery Colleges support recovery for adults with mental health problems, through coproduction and education principles. This study aimed to determine whether students at three Recovery Colleges in England were representative of mental health service users. Methods: Gender, age, ethnicity, diagnosis, involuntary detention, and inpatient admission were extracted from clinical records. Data for all service user students enrolled, and those who had attended 70% of a Recovery College course were compared to mental health services caseloads, using chi-square goodness-of-fit tests. Results: Clinical records were identified for 1,788 students. Significant differences were identified for gender, age, and diagnosis (p < .001). In some Colleges, more students had recent inpatient admissions or involuntary detentions. Conclusions and Implications for Practice: Service user students were largely representative of mental health service users, although some groups were underrepresented. Further research is needed to understand why, so that Recovery Colleges can continue to address inequalities.

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“…At the service delivery level, the GO programme can be commissioned locally and delivered by anybody who works with people living with dementia who adheres to the values and principles of the programme. A range of organisations are developing and delivering courses for people living with dementia, for example Recovery Colleges ( Lowen et al, 2019 ) and our partner organisation Innovations in Dementia. The GO programme is continuing to be implemented through AgeUK.…”

Section: Discussionmentioning

confidence: 99%

‘I feel more part of the world’: Participatory action research to develop post-diagnostic dementia support

et al. 2023

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Many people living with dementia are ‘on the margins’, not accessing services and support, despite policy and care advancements. The COVID-19 pandemic exacerbated this, with the closure of face-to-face support during lockdowns in the UK and globally. The aim of the ‘Beyond the Margins’ project was to develop, implement, and evaluate a face-face programme of support with, by and for people with direct experience of dementia who are on the margins of existing services and support. In March 2020 the project was interrupted by the outbreak of the COVID-19 pandemic and it changed to an online format. The three-phase participatory action research project included 40 people living with dementia, 26 care partners and 31 health and social care practitioners. A seven-week online personal development programme called Getting On with Life (GO) was developed, delivered, and evaluated. This paper focuses on the participatory approaches used to develop and implement the GO programme, and the resulting aspects of its approach to facilitation and content. Key features include the GO Programme’s principles of providing a safe and a respectful space, and the programme’s values of: Everyone who comes already knows things, can learn things and can teach things; Doing things ‘with’ each other, rather than ‘for’ or ‘to’ each other; Personalised goals—led by the needs of participants rather than an imposed agenda. A key finding was the importance of developing post-diagnostic programmes as a ‘sandwich’, providing a safe space for learning that is preceded by understanding pathways to access the programme and followed by explicit consideration of the next steps in increasing social engagement.

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Recovery colleges and dementia courses – a scoping survey

Cited by 7 publications

References 11 publications

A Case Study of Co-production Within a Mental Health Recovery College Dementia Course: Perspectives of A Person With Dementia, Their Family Supporter and Mental Health Staff

A Case Study of Co-production Within a Mental Health Recovery College Dementia Course: Perspectives of A Person With Dementia, Their Family Supporter and Mental Health Staff

Who uses recovery colleges? Casemix analysis of sociodemographic and clinical characteristics and representativeness of recovery college students.

‘I feel more part of the world’: Participatory action research to develop post-diagnostic dementia support

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