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P20. INTERDEM - Needs and experiences of people with dementia and their carers

Detailed programme and abstracts

Introduction: Social health and self-management


1Department of IQ Healthcare, Radboudumc, Nijmegen, Netherlands, 2Institute of Mental Health, University of Nottingham, United Kingdom

Social factors related to dementia have been neglected for a long time. Recently the umbrella concept of social health opened new avenues to gain better knowledge on its influence on cognitive functioning and on the potential for interventions to improve cognitive functioning. In this symposium we present several aspects of social health research in dementia. We explore which social health indicators are used in epidemiological research and will be used to explore the relation between social factors and cognition. An important social factor is the relation of the person with dementia with the informal caregiver. Differential types of dyads may need differential support. Knowledge on these dyads might be beneficial in developing tailored support structures instead of standard care or individualized support. New interventions to stimulate social health have been developed. An intervention to promote self-management and social health (in particular through engagement in life) will be presented, as well as an intervention using the technology of a closed social networking platform.

P20.1. Social health in epidemiological dementia research


1Department of IQ Healthcare, Radboudumc, Nijmegen, Netherlands, 2Radboud University Medical Center, Nijmegen, Netherlands, 3Department of primary and community vcare, Radboud University Medical center, Nijmegen, Netherlands, 4Radboud Institute for Health Science, Radboud University Medical center, Nijmegen, Netherlands

Background: Social health relates to the influence of social and environmental resources on an individual’s functioning, especially on the balance between capacities and limitations.  Social resources contribute to whether capacities have the opportunity to thrive and limitations to be accepted or compensated. This might influence the onset and development of dementia through impacting an individual’s capacity to withstand brain pathology. The aim of this paper is to explore the operationalization of social health in epidemiological dementia research.

Methods: Exploration of operationalization of social health in epidemiological databases. The exploration is guided by the domain structure of social health: the influence of social resources on fulfilment of potential and obligations, on autonomy and on the ability to participate in social activities.

Results: In the recently started JPND SHARED we bring together >40 studies including more than 150.000 individuals that together capture the whole life course and the entire population from cognitively healthy to severe dementia. The available longitudinal data include social, environmental, clinical, mental and physical factors and data on cognitive and brain reserve and brain imaging. The social factors include information on autonomy and on the ability to participate in social activities, but not on the influence of social resources on fulfilment of potential and obligations.

Conclusion: Epidemiological data are very important in providing insight into the influence of social factors in the course of dementia. They allow to study determinants and consequences of social health. The current databases can be improved by including measures that better reflect social health.

P20.2. Are their typical dyads of persons with dementia and their informal caregivers and what do we know about differences in observed quality of life and social participation? – Results from the German PfADe-Study


1Health Sciences Bremen, University of Brenen, Germany, 2Institut für Teilhabeforschung, Katholische Hochschule NRW, Köln, Germany, 3Competence Center for Clinical Trials, University of Bremen 

Background: In home-based dementia care different types of care-arrangements concerning the primary informal caregiver (CG) taking on the decisive role in providing care and support for the person with dementia (PwD) can be found. Due to the progression of illness and burden of care not only PwD but also many CG are socially deprived and vulnerable to risks of illness. Focusing on PwD and their CG as a dyad is therefore vitally important for a more comprehensive identification and description of care situations as well as the development and implementation of targeted support for both CG and PwD. The objective of the PFADe-Study therefore was first to identify typical dyadic CG-PwD constellations and second, to describe potential differences in observed quality of life (QoL) and social participation.

Methods: A secondary analysis using latent class analyses based on cross-sectional data collected within the multi-centered DemNet-D study (Germany, 2012-2015) was performed. A total of 548 CG-PwD-dyads were included in the analysis.

Results: We identified six typical types of dyads (CG-PwD-constellations) depending on significant differences in sex, age, relationship, housing situation, professional activity of CG and care intensity of CG. The most frequent dyads consisted of old male PwD and their spouses (31.4%) or old female PwD and their daughters (22.9%) but also non-familial types were found. QoL differed significantly between dyad-types for PwD as well as for CG. Also reported burden of care (BIZAD) varied between types of dyads. For social inclusion (SACA) no significant differences could be found.

Conclusion: The results suggest that taking into account the type of dyadic structure and social embedding of the PwD-CG-constellation might be beneficial to develop and implement specifically tailored support structures for these PwD-CG-dyads in order to improve QoL.

P20.4. Results of the Journeying through Dementia Randomised controlled trial


University of Bradford, United Kingdom

Background: Self management is a self-evident approach to ensure social health while living with dementia yet has had relatively limited empirical testing. The aim of this paper is to evaluate an intervention promoting self management and social health following a dementia diagnosis.

Methods: Journeying through Dementia is an intervention developed to promote self management and social health (in particular through engagement in life) following dementia diagnosis. It is a menu driven, manualised intervention, comprised of 12 weeks of facilitated group sessions with up to 12 people with early stage dementia and monthly one to one sessions with a facilitator. Supporters are able to join certain of the group sessions and the one to one sessions if the participant chooses.  Enactment of activities with support from other group members and the facilitators is a key aspect of the intervention.

Results: The intervention has been evaluated in England from 2015-2019 through a pragmatic randomised controlled trial with 480 participants in 13 sites. This presentation will provide the quantitative findings from this trial, which will not be known until the beginning of October as outcome measurement is on-going until the end of May 2019. The presentation will also recount headlines from the associated fidelity assessment and the embedded qualitative study.

Conclusion: The present study will assist with building the evidence base needed to support commissioning and further develop knowledge which places the person at the centre of support services. 

P20.5. Exploring how people with dementia and carers engage with

WOLVERSON Emma1, PAULSON Kevin2, DUNN Rosie1, HOWE Dave1, THORPE Jonathan1, WHITE Caroline1

1Facullty of Health Sciences, University of Hull, United Kingdom, 2Faculty of Science and Engineering, university of Hull, United Kingdom

Background: Web-based platforms could address unmet social-support needs for people living with dementia/cognitive impairment (PwD) and carers. However, a lack of detailed logging within previous research, and a reliance on self-report to measure interaction, has limited our understanding of how groups engage with and develop social networks online. This paper describes user engagement within a closed social networking platform during the UK arm of the Horizon 2020 CAREGIVERSPRO-MMD study. Our aim is to outline the dynamics of the network and how PwD and carers engage with social networks.

Methods: 95 Dyads of PwD and their carers were recruited and randomised to intervention (n= 49). 80% of participants had home access to the Internet. Intervention dyads received web-enabled devices to access the closed platform. Regular training groups were offered to participants. Activity was analysed from logging actions such as logging on/off, clicking through information or posts, ‘liking’ and making friends.

Results: User engagement was high with no significant differences between PwD and carers’ use of the platform. Experience of the Internet did not correlate with engagement. Both PwD and carers showed wide variations - we were able to identify eight distinct digital personas. 20% of participants created content and used all features, with a quarter of these being PwD. 63% of participants read posts, but under half would respond. Participants who met other participants face-to-face had more engagement and more network friends. Most friendships were between people who attended training sessions together; however, some acted as network ‘bridges’ between groups.

Conclusion: With appropriate support, PwD are willing/able to use a digital platform, with many actively contributing. Meeting in person significantly increased social networks online. The digital personas developed may allow services to be designed for specific groups.  The importance of content creators was highlighted by their high connectivity across the network.



Last Updated: Wednesday 03 July 2019