Basket | Login | Register

 
 
 
 

P27. INTERDEM: Promoting social health in dementia

Detailed programme, abstracts and presentations

Social health as described by Hubert et al. (2011) involves (1) the capacity to fullfil one’s potential and obligations; (2) the ability to manage life with some degree of independence; and (3) participation in social activities. Dröes et al. (2017) operationalised this concept for people with dementia and identified three categories of influencing factors in each domain of Social Health:personal,disease relatedandenvironmentalfactors. This session focusses on how Social Health can be supported and maintained by good dementia care that takes into account, and compensates for, these influencing factors. Several studies into interventions addressing the different aspects of social health will be presented and a member of the European Working Group of People with Dementia (EWGPWD) will reflect on the relevance of this concept from the perspective of people living with dementia.

The first presentation on the Meeting Centres 3.0 project will report on the implementation of three new interventions connected to Meeting Centres that aim to support people with dementia in fulfilling their potential by doing volunteer work (DemenTalent) and offer support to their carers by telephone coaching (Dementelcoach) and online psychoeducation (STAR e-learning). The second presentation will focus on how expression groups for people with dementia helped to investigate their feelings about self-management. An in depth view on how participants of these groups considered aspects of their life being more or less important to “manage” together with their (in)formal caregiver will be provided. The third presentation will give an overview of technology-based interventions supporting the participation of people with dementia in social activities, based on a literature review. The final presentation, by the EWGPWD, will reflect on the relevance of social health for people with dementia and on how interventions addressing this can contribute to a dementia-friendly society supporting the Rights of people with dementia.

P27.1 Developing Meeting Centers into Meeting Centers 3.0

VAN RIJN Annelies, MEILAND Franka, DRÖES Rose-Marie

Department of Psychiatry, VU University medical center Amsterdam, Netherlands

Background: Practice learns that only part of the people with dementia and carers utilise group oriented day care facilities or combined support services, such as Meeting Centres. In the Meeting Centers 3.0 project, therefore three outreaching new individualised support interventions for people with dementia (i.e. DemenTalent voluntary work) and carers (i.e. Dementelcoach and STAR education) were linked to the proven successful Meeting Centers Support Programme. The implementation process and the effect of the extended programme were investigated in a three year study. This lecture will report on the implementation process.

Method: Qualitative interviews were held with 15 stakeholders involved in the implementation, e.g. program coordinators and township officials. The interviews aimed to trace factors that facilitated or impeded the implementation on a micro, meso and macro level and to inventory the solutions found to overcome the experienced barriers. An interview schedule was created, with questions about the successive implementation phases: the preparation, starting and continuation phase (after one year). Taking into account the stakeholder’s expertise and role in the implementation, a specific set of questions/themes was selected. Interviews were typed out ‘ad verbatim’ and analyzed qualitatively by means of thematic analyses with Atlas-ti. Additionally, semistructured questionnaires were taken from participants to evaluate their experience with the new interventions.

Results: Facilitators and barriers in the different implementation phases will be presented. Overall the results show that, although it takes time and effort to implement the new interventions, people with dementia and carers generally experience them as a valuable addition, demonstrated by the following reactions: ‘I’m happy and I feel useful again’ (DemenTalent volunteer); ‘The conversations lifted me up’ (carer about Dementelcoach); ‘STAR made me feel more confident’ (carer about STAR).

P27.2. Self-management: the view of people with dementia

GZIL Fabrice

Fondation Médéric Alzheimer, Paris, France

In 2016 and 2017, Fondation Médéric Alzheimer (Paris) organized a series of expression groups for people with dementia. Participants were asked about how dementia affected their life, their coping strategies, their opinion and wishes about the care they received, and their expectations towards society. This initiative gives an interesting point of view about the ability to manage life with some degree of independence as explained in the second dimension of social health. Although the expression groups were clearly not conceived as an intervention to help people with dementia manage their life, what participants said is thought-provoking for discussing the essence of, and the factors that can influence, the ability to manage life in the context of dementia.

This ability has been defined as the ability to preserve autonomy and to solve problems, as well as to adapt to and cope with the consequences of dementia (Dröes et al., 2017). Therefore, it is often stated that being independent, self-reliant and able to adapt and cope are central aspects of effective management of life in dementia. Participants of the expression groups expressed a slightly different view. They considered important to adapt to, and to cope withchangingabilities. They use compensation strategies. They also strongly state that formal and informal care should more clearly strengthen them in their forces and capabilities. Moreover, participants seem to value the fact of managing life with some degree of independence in a very specific sense:  participants consider that some aspects of their life are not important to “manage” anymore: they want their voice to be heard; but they do want to ‘manage’ all the aspects of life they used to. In addition, participants value independence; they want their competencies and skills to be recognized; they sometimes harshly criticize carers when they find them overprotective; but they also strongly value reciprocity in relationships; and they have a deeply relational conception of autonomy and independence, which is very different from self-reliance understood as self-sufficiency.

These observations are important to keep in mind when designing interventions aiming at supporting people with dementia to manage their life.

P27.3. Technology challenges for improving social participation in older adults with dementia

GARCIA-CASAL Antonio1, PINTO-BRUNO Ángel2, FRANCO-MARTÍN Manuel3

1INTRAS Foundation, Zamora, Spain, 2Department of Clinical psychology, Faculty of Behaviour and Movement Sciences Vrije Universiteit Amsterdam, Netherlands, 3Department of Psychiatry, University Rio Hortega Hospital (Valladolid)and Zamora Regional Hospital, and Salamabce University, Spain

Objectives: Information and communication technologies (ICT) developers, together with dementia experts have created several technological solutions to improve and facilitate social health and social participation and quality of life of older adults living with dementia. To get insight into the validity and efficacy of these new technologies a systematic literature review was carried out that focused on assessing their utility to promote ‘social health’ and ‘active ageing’ in people with dementia.

Method: Searches in PsycInfo, PubMed, CINAHL and Scielo databases identified 3824 articles of which 6 met the inclusion criteria and were described according to their methodological approach, sample sizes, type of outcomes and results.

Results: The selected papers reported the use of 10 different ICT-based interventions for people with dementia. Qualitative studies showed a benefit of the use of technologies to foster social participation in people with dementia. At the same time, barriers to a widespread use of these technologies in this population were identified. A quantitative study and a mixed-method study with quantitative outcomes showed that ICT-based interventions are more effective in promoting social behaviours than non-technology-based interventions. As outcome measures existing scales, such as the Short Form Health Survey, and the WHO-Quality of Life Scale Brief Version, which include subdomains assessing social health (e.g. Social Role Functioning, Social relationships), were used. In the selected studies also usability aspects and user experiences were discussed.

Conclusions: Though several technological devices for living independently and fostering social participation in people with dementia were developed, until recently very little attention has been paid to these subjects in the literature. One of the primary obstacles is the lack of appropriate outcome measures. Even though the analysed studies provided some evidence-base for the benefit of technology to promote social participation, there is an urge for high quality studies using more specific outcome measures.

P27.4. Social health from the perspective of a person with dementia

ROCHFORD-BRENNAN Helen

EWGPWD Ireland

In this presentation, I will talk about the relevance from the perspective of a person living with dementia of social health and each of its three main domains. I received a diagnosis of Alzheimer’s disease several years ago and this was a very difficult time for me and my family but I have learned that with the right support and by maintaining a positive attitude, you can live well with dementia. I will draw on my experience of how the environment in which a person lives and the people around them can have a major impact on the way a person functions, their ability to make decisions and live independently and how they can continue to contribute towards society as any other citizen. I am a Community and Human Rights Activist and I will bring this dimension into my talk and show how this could relate to social health.

 

 
 

Last Updated: Wednesday 14 November 2018

 

 
  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

Options