The meeting centres support programme for people and families living with dementia at home: Translating an evidence-based intervention from the Netherlands to Italy, Poland and the UK

DOI

Two Meeting Centres were established in the UK, one in Droitwich Spa and one in Leominster, and the aim was to recruit 25 people with dementia/carer dyads per Meeting Centre for both the MC and UC groups. A variety of data collection activities were carried out, including: (1) Questionnaires with people with dementia and carers (DQOL, QOLAD, NPI, Cornell, GHQ CCRI); (2) Satisfaction surveys with people with dementia and carers; (3) Focus groups with people with dementia and carers ; (4) Interviews with members of the Meeting Centre Initiative Groups. MEETINGDEM aimed to implement and validate the successful, inclusive Dutch Meeting Centres Support Programme (MCSP) for community dwelling people with mild to moderately severe dementia and their family carers in three EU countries (Italy, Poland, UK). MCSP provides a social club for persons with dementia, information meetings and discussion groups for carers, and individual consultations and plenary centre meetings for both. After exploring pathways to care, the three countries established initiative groups of organizational collaborators and user representatives; inventoried facilitators/barriers to implementing MCSP; and developed implementation plans, practical guides and toolkits, utilizing and adapting Dutch materials. Staff were trained and 9 Meeting Centres (MC) established (Italy-5, Poland-2, UK-2) and later another 6 MC (Italy-4, Poland-2). The first 9 MC participated in the study into MCSP’s impact on people with dementia (behaviour, mood, quality of life/ QoL) and carers (sense of competence, mental health, loneliness, distress, experienced burden), its cost-effectiveness and user satisfaction. Implementation evaluation: Overall MCSP components and vision were maintained in all countries/centres. Country specific requirements resulted in variations in inclusion criteria, frequency of programme components, culture specific activities. Factors facilitating implementation were: added value of MCSP and evidence of its effectiveness, matching needs of the target group, enthusiastic local stakeholders, suitable staff and project-manager. Barriers were: competition with care/welfare organizations, scarce funding. Effect evaluation: MCSP appeared more effective on QoL (feelings of belonging, self-esteem, positive affect; with medium to large effect sizes) of people with dementia than usual care. Higher attendance levels were associated with greater neuropsychiatric symptom reduction and increased feelings of support. Carers experienced less burden than those receiving usual care. In Italy carers experienced better mental health and less distress by mood/behaviour symptoms of people with dementia. Economic evaluation: Health and social care costs were 990 Euro/month higher in MCSP than UC group, due to MCSP costs, but compared to ‘standard day care’ the combined MCSP costed only 3 Euro/hour more (20%). Evidence suggests that on some quality of life in dementia measures (QOL-AD, DQoL), MCSP may be cost-effective. User evaluation: People with dementia and carers were highly satisfied with MCSP. Carers felt the activities for people with dementia are functionally activating and provide an important means for social and emotional interaction. Conclusion: MCSP is transferable across countries and shows improved quality of life and mental health benefits for people with dementia and carers against reasonable additional costs. Dissemination of MCSP in Europe and beyond is recommended.

Data collected through interviews and focus groups with people with dementia and their families. Data was collected at two time points: when people start attending a Meeting Centre (baseline) and after receiving 7 months of support (follow-up). Two groups of participants were recruited, people with dementia and their carers who attend a Meeting Centre (MC group) and a control group of people with dementia and their carers who do not attend a Meeting Centre but receive ‘usual care’ instead (UC group).

Identifier
DOI https://doi.org/10.5255/UKDA-SN-852791
Metadata Access https://datacatalogue.cessda.eu/oai-pmh/v0/oai?verb=GetRecord&metadataPrefix=oai_ddi25&identifier=fe2473fa75d301897cbd227f9c235a82ca73346f436ed889f794230138c474ea
Provenance
Creator Brooker, D, University of Worcester
Publisher UK Data Service
Publication Year 2018
Funding Reference Economic and Social Research Council
Rights Dawn Brooker, University of Worcester. Simon Evans, University of Worcester. Shirley Barbara Evans, University of Worcester. Martin Richard Knapp, London School of Economics and Political Science; The Data Collection is available for download to users registered with the UK Data Service. All requests are subject to the permission of the data owner or his/her nominee. Please email the contact person for this data collection (cc'ing in the ReShare inbox) to request permission to access the data, explaining your reason for wanting access to the data.
OpenAccess true
Representation
Language English
Resource Type Numeric; Text
Discipline Social Sciences
Spatial Coverage Worcestershire; United Kingdom