Meetingdem: adaptive implementation and validation of the MCSP programme for people with dementia and their carers in Europe

Meetingdem: adaptive implementation and validation of the MCSP programme for people with dementia and their carers in Europe

Background

Starting date: 01/03/2014

Background and state of the art

Being faced with dementia has substantial consequences for both persons with dementia and their families. Various support services and psychosocial interventions, e.g. home care, psychogeriatric day care, occupational therapy, psychoeducation and support groups for carers, are available to support them (Moniz-Cook & Manthorpe, 2008; Dröes et al., 2011). However, it is often difficult for people with dementia and their carers to acknowledge having dementia and to ask for help. There is still a taboo on dementia, people are afraid to become dependent on others and fear nursing home admission in particular. Therefore, they tend to delay asking for help and often ask for help only at a late stage, risking overburdening of informal carers and ‘accelerated’ nursing home admission (Van Mierlo et al., 2012). In addition, the available services are often fragmented, making it difficult for people to find the services that fulfil their individual needs and preferences. As a result many of them experience unmet needs (Van der Roest et al., 2007).

In recent decades a variety of psychosocial interventions for people with dementia and carers have been developed and evaluated. Several systematic reviews demonstrate that multicomponent support programmes for people with dementia and their carers, including combinations of information, practical, emotional and social support, attuned to the individual needs, are more effective than single support activities for patients or carers (e.g. participation in day care or a support group) (Acton & Kang, 2001; Brodaty et al., 2003; Smits et al., 2007). Overall it is concluded that the general mental health of patients and carers are improved by combined support programmes and that admission to long-term care is delayed (Smits et al., 2007). Examples of positively evaluated combined programmes include case management in combination with psychoeducation, skills training and behaviour management for the caregiver (Auperle & Coyne, 2000), a multimodal 4-week treatment programme to help people accept and adapt to the consequences of dementia (Romero & Wenz, 2002), an environmental skill building programme (Gitlin et al., 2003), and the multicomponent Meeting Centers Support Programme (Dröes et al, 2000, 2004a,b, 2011).

Although the added value of combined support programmes has been demonstrated repeatedly in scientific studies, their implementation remains limited in care practices across Europe. Research into the implementation of care innovations, including psychosocial care interventions, shows that dissemination and implementation are not easy and certainly not a guaranteed consequence of proven effectiveness of these innovations. Implementation research that yields knowledge on context related facilitators and barriers of implementation, as well as effective implementation strategies and materials (incl. the necessary training of organizations and staff), is therefore extremely important in order to advance the implementation of evidence based care innovations (Meiland et al, 2004, 2005; Grol et al, 2004; Moniz-Cook et al., 2011). This JPND funden project focuses on the further dissemination, implementation and evaluation of the Meeting Centers Support Programme, which was evaluated positively and successfully disseminated in the Netherlands, in other European countries.

 

Rationale

The predicted increase in the number and proportion of older people with dementia, such as Alzheimer’s disease and vascular dementia, over the next 40 years highlights the need to identify ways to promote timely cost-effective interventions that help people with dementia to continue to live independently in the community as long as possible. In order to address this issue and solve the above mentioned problems that tend to delay timely care and support, risking overburdening of family carers, the Meeting Centers Support Programme (MCSP) offers an integrated package of care and support:

 

  • both for the person with dementia and for their informal carer(s). For the person with dementia a social club is organised (three days/week), where they can participate in (re)creational activities and psychomotor therapy. For carers there are psychoeducational meetings and discussion groups. For both there are social activities, a weekly consultation hour and regular ‘centre meetings’ that allow all participants, staff and volunteers to share experiences. The staff also help to coordinate care at home.

 

  • attuned to individual needs. The support strategy is innovative in that it is fully attuned to the individual needs of participants. The MCSP is theoretically based on the Adaptation-Coping model (Dröes, 1991), which explains how patients and carers adapt to and cope with the changes they experience in their lives because of the dementia, and how biological, psychological and social factors can influence this process. Based on the problems they may experience with adapting (e.g. with adapting to disabili-ties and maintaining an emotional balance, a positive self image and social relationships), an indivi-dual care and support plan is set up, which is evaluated regularly and adapted if necessary. Depen-ding on the identified problems/needs, the support strategies for people with dementia vary from giving information to help them better deal with the changes in their lives, to trying to reactivate, resocialize and optimize their emotional functioning (Dröes et al., 2000). Support strategies for family carers vary from giving information to offering practical, emotional and social support (Dröes et al., 2004a).

 

  • that have been demonstrated to be beneficial for people with dementia and carers. The program integrates several support activities that have been shown to be effective for persons with dementia or their carers in research and/or practice. These include cognitive stimulation, activity groups, music therapy, psychomotor therapy, family support groups, psychoeducation and counselling.

 

  • in an accessible location that facilitates social inclusiveness and community integration. The Meeting Centres are integrated in easy to access community centres, maximising social integration with people from the neighbourhood and promoting social participation. This makes them more attract-ive than institutional day care (common in many EU countries) and makes it easier for people to use support from an early stage of the disease. Examples of activities that have developed in the centres spontaneously include: playing billiards and having a drink with visitors at the bar, painting together, and singing with children from the crèche. In addition, family carers participate in activities in the com-munity centre. Through contacts that users develop in the centres local solidarity is stimulated, volun-teers for MCSP are easily recruited, and public attitudes towards dementia are positively influenced.

 

  • On the border of care and welfare. To counteract the fragmentation of care and welfare services, the MCSP is offered by a small professional team and volunteers in close cooperation with other (multidisciplinary) professionals/organizations in the region that offer dementia care. These include general practitioners, memory clinics, home care agencies, mental health care organizations and nursing homes. Some of them participate in the delivery of the program by e.g. leading  discussion groups or delivering informative lectures. This collaboration is formalized in a written agreement.

 

Preliminary results: MCSP positively evaluated

The efficacy of the MCSP was demonstrated in two controlled multicentre studies in the Netherlands (1994-2003) in which MCSP was compared with psychogeriatric day care in nursing homes (Dröes et al., 2000, 2004a,b). In both studies, compared to those using regular day care, after 7 months of participation in the MCSP participants with dementia showed less behavioural and mood problems (less inactivity, unsocial and depressed behaviour, and a higher self esteem) and nursing home admission was delayed (after 7 months 4% of the MCSP-participants were admitted to a nursing home compared to 30% of day care participants). Carers taking part in the MCSP generally felt more competent and less burdened than carers using day care as respite only (Dröes et al., 2004a), and lonely carers also reported fewer psychosomatic complaints. Patients and carers reported high levels of satisfaction with MCSP and the majority of carers felt supported by other carers (Dröes et al., 2011).

 

Dissemination and implementation

Implementation research in the Netherlands identified various factors that promoted successful imple-mentation of MCSP, including specific characteristics of the program (filling gaps in the care offer for the target group), experienced staff, adequate funding and good cooperation between care and wel-fare organizations (Meiland et al., 2004, 2005). An implementation guide (Dröes & Ganzewinkel, 2003), film and training course for staff were prepared to help care and welfare organizations set up meeting centres, while a helpdesk supported dissemination of the MCSP approach. As a result the centres have spread across the country and today there are 90 centers in the Netherlands (with another 25 in preparation). They offer support to 2250 people with dementia and 2250 carers annually. There has been a lot of interest for MCSP from all over the world, including from European countries. To date, two centres have been established in Surinam and Curacao and a network of 55 ‘meeting points’ based on the MCSP model was successfully set up in the region of Emiglia Romagna in Italy.