Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice

ABSTRACT

Background: Because the pattern of illnesses changes in an aging population and many people manage to live well with chronic diseases, a group of health care professionals recently proposed reformulating the static WHO definition of health towards a dynamic one based on the ability to physically, mentally and socially adapt and self-manage. This paper is the result of a collaborative action of the INTERDEM Social Health Taskforce to operationalize this new health concept for people with dementia, more specifically the social domain, and to formulate directions for research and practice to promote social health in dementia.

Method: Based on the expertise of the Social Health Taskforce members (N = 54) three groups were formed that worked on operationalizing the three social health dimensions described by Huber et al.: (1) capacity to fulfil potential and obligations; (2) ability to manage life with some degree of independence; (3) participation in social activities. For each dimension also influencing factors, effective interventions and knowledge gaps were inventoried. After a consensus meeting, the operationalizations of the dimensions were reviewed by the European Working Group of People with Dementia (EWGPWD).

Results: The social health dimensions could be well operationalized for people with dementia and are assessed as very relevant according to the Social Health Taskforce and EWGPWD. Personal (e.g. sense of coherence, competencies), disease-related (e.g. severity of cognitive impairments, comorbidity), social (support from network, stigma) and environmental factors (e.g. enabling design, accessibility) that can influence the person with dementia's social health and many interventions promoting social health were identified.

Conclusion: A consensus-based operationalization of social health in dementia is proposed, and factors that can influence, and interventions that improve, social health in dementia identified. Recommendations are made for research and practice.

KEYWORDS:

• Social health
• dementia
• effective interventions
• capacity
• self-management
• social participation

Acknowledgments

The authors of the article wish to thank the participants of the different theme groups of the Social Health Taskforce that worked on the operationalization of Social Health: Chantal van Audenhove (Belgium), Dympna Casey (Ireland), Simon Evans (UK), Andrea Fabbo (Italy), Manuel Franco (Spain), Debby Gerritsen (The Netherlands), Marie Vittoria Gianelli (Italy), Manuel Gonçalves-Pereira (Portugal), Fabrice Gzil (France), Hein van Hout (The Netherlands), Anthea Innes (UK), Yun Hee Jeon (Australia), Raymond Koopmans (The Netherlands), Fritze Kristensen (Denmark), Andrés Losada Baltar (Spain), Phil McEvoy (UK), Joanna McHugh (Ireland), Franka Meiland (The Netherlands), Esme Moniz-Cook (UK), Jacqueline Parkes (UK), Joanna Rymaszewska (Poland), Nele Spruytte (Belgium), Claire Surr (UK), Marjolein de Vugt (The Netherlands), Karin Wolf-Ostermann (Germany), Sytse Zuidema (The Netherlands). The authors also wish to thank the European Working Group of People with Dementia (EWGPWD) of Alzheimer Europe (Luxembourg), who gave feedback on the operationalization of Social Health suggested by the theme groups, and Martin Orrell (UK) for reviewing the first draft of the paper.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes

1. In 2012, Alzheimer Europe set up a Working Group of People with Dementia (EWGPWD). The EWGPWD is composed of 10 people with dementia from different countries and with different types of dementia. The EWGPWD works to ensure that the activities, projects and meetings of Alzheimer Europe duly reflect the priorities and views of people with dementia. The group operates independently, with its own Board and agenda of activities. The Chairperson of the EWGPWD also sits on the Board of Alzheimer Europe.