MeetingDem 2014-17

MEETINGDEM is a European Joint Programme Neurodegenerative Diseases Research funded project (2014-2017) aimed at implementing and evaluating the innovative Meeting Centers Support Programme (MCSP) for community dwelling people with dementia and their carers in Europe. This programme, which has been developed and evaluated in the Netherlands, has been adaptively implemented in three European countries, i.e. Italy, Poland and the United Kingdom. Within each participating country a national project team of at least one research institute conducted the implementation study.

Background

The predicted increase in the number and proportion of older people with dementia over the next 40 years highlights the need to identify ways to promote timely cost-effective post-diagnostic interventions that help people with dementia to continue to live independently in the community as long as possible. Research demonstrates that multicomponent combined support programmes for people with dementia and their carers, including information, practical, emotional and social support, attuned to the individual needs, are more effective than single support activities for patients or carers.

The Meeting Centers Support Programme offers an integrated package of care and support, including a social club were people with dementia can participate in meaningful activities and person-centered interventions, information meetings and discussion groups for carers, and individual consultations and plenary (social) centre meetings for both.

Aim

The overall aim of MEETINGDEM was to prepare, support and evaluate the dissemination and implementation of the successful Dutch MCSP for people with dementia and their carers in Italy, Poland and the United Kingdom (see the description of the research under Research).

Methods

After exploring pathways to care, each country established initiative groups of organizational collaborators and user representatives; inventoried country/region specific facilitators/barriers to implementing MCSP; and developed an implementation plan, practical guide and toolkit, utilizing and adapting existing Dutch materials. Staff were trained and 9 Meeting Centres (MC) successfully 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.

The efficacy and cost-effectiveness of the implemented MCSP was evaluated by means of a 6 months pretest-posttest control group trial in which the MCSP was compared with matched patient-carer dyads receiving usual care (home care or another type of day care not supporting the carer) on a European and country level. The user evaluation was assessed by means of standardized questionnaires. To inventory factors that influenced the implementation, key figures were interviewed.

Findings

Implementation results: MCSP components and vision were maintained. Country-specific requirements resulted in some variation in inclusion criteria, frequency of programme components, culture specific activities.  Factors facilitating implementation were: added value of MCSP, evidence of its effectiveness, matching needs of target group, enthusiastic local stakeholders, suitable staff. Barriers were: competition with care/welfare organizations, scarce funding.

Effect evaluation: Pre/post data were collected among 85 people with dementia and 93 carers from 9 MCs and 74 dyads receiving UC. After 6 months, MCSP appeared more effective on QoL (feelings of belonging, self-esteem, positive affect; with medium to large effectsizes) 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. Compared to unit costs of ‘generic day care’ the combined MCSP costed only 3 Euro/hour more (20%). Evidence suggests that on some dementia-specific quality of life 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.

Impact

Further adaptive implementation of the MCSP in the three participating European countries and beyond will have high added value for people with dementia and their carers, as combined multicomponent support is usually not offered. Thus, implementation of the MCSP, adapted to country specific conditions, has the potential to support and increase quality of life of a substantial number of patient-carer dyads.

Moreover, the MCSP, as shown in the Netherlands, Italy, Poland and the UK, improves collaboration between care and welfare organisations, professionals and volunteers. Further dissemination of MCSP will therefore counteract the present fragmented and inefficient dementia care.

The MCSP model is of high interest for policymakers as well: repeated research showed that the benefits of MCSP for people with dementia and carers are associated with lower or little additional costs (depending of the costs for usual care in a country) compared to regular day care without carer support, potentially resulting in substantial economic savings on the long term. MCSP makes it easier for people to ask for help in a timely manner, thus maximising social integration and delaying the use of more expensive residential care. The MCSP is a low-cost model that can be easily replicated by partnerships with existing care and welfare organizations, designing context-specific implementation plans.