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SS3 Living well with dementia and social health

Detailed programme and abstracts

Special Symposium SS3: Living well with dementia and social health (Wednesday 2 Nov., 08.30 - 10.00)

There is a discrepancy between neuropathology and cognitive symptoms. This indicates that other factors might influence the dementia process, including social health. How can social health contribute to living well with(out) dementia? Social health relates to the balance between opportunities and limitations influenced by social and environmental factors. Treatment of dementia by social health related interventions such as music therapy and cognitive stimulation showed a positive effect on persons with dementia. These interventions stimulate the use of the potential of persons with dementia. A major advantage of social health related interventions is that they are connected to normal life and not only to pathology.

This symposium will highlight the relevance of social health of people with dementia such as the role of social health in living well with dementia, the operationalization of new social health related concepts and new perspectives in measuring outcomes of interventions. Moreover, special attention will be paid to the key concept of autonomy of people with dementia and social health in residential care.

SS3.1. Social health and living well with(out) dementia

VERNOOIJ-DASSEN Myrra, CHATTAT Rabih, MARIANI Elena, ENGELS Yvonne, MONIZ-COOK Esme

There is a discrepancy between neuropathology and cognitive symptoms. This indicates that other factors might influence the dementia process, including social health. How can social health contribute to living well with(out) dementia? A scoping exercise has been performed on the impact of social health on prevention and treatment of dementia. Social activities had a protective effect and contributed equally to reduction of the risk of dementia as physical and mental factors. Treatment of dementia by social health related interventions such as reminiscence, music therapy and cognitive stimulation showed a positive effect on persons with dementia. These interventions stimulate the use of the potential of persons with dementia. A major advantage of social health related interventions is that they are connected to normal life and not only to pathology. They facilitate normal life. These interventions relate less to care and more to normal life. Even care interventions such as shared decision making on plans to live with dementia are less directed at pathology. As an example, we will present the results of a controlled trial on shared decision making in nursing homes. Social health related interventions contribute to evidence based hope: the change of the disaster scenario into hope on living well with(out) dementia.

SS3.2. Social and functional health of home care clients with different levels of cognitive impairments

GARMS-HOMOLOVÁ Vjenka

Objectives: According to Huber and colleagues (2011: 2), the ability of “managing own life with some degree of independence”, “fulfilling of basic obligations”, and “participating in social activities” are social functions that delineate the core of “social health”. We examine to what extent clients of community care in Europe (n=2796) are able to complete such activities despite the fact that many of them exhibit cognitive problems. Here, we focus particularly on “mildly and moderately impaired people”, age 65 years and older.

Methods: Data were collected by the interRAI HC-Assessment in the framework of the IBenC-project. We tested the association between participants’ capacity and performance in three IADLs and their general cognitive performance and specific memory problems using a general linear model.

Results: About thirty percent of clients of home care services in Europe suffer from mild to moderate cognitive impairment. Their relatively independent coping with requirements of routine activities at home and in the community is strongly determined by overall cognitive performance. Specific memory functions are relatively unimportant, except for procedural memory. In terms of social relations, it is striking that all clients, and particularly those with mild to moderate cognitive impairment interact mostly with close relatives and friends.

Discussion: When considering the influence of cognitive function on clients’ capacity and performance in everyday activities and social relations, a comprehensive construct of cognitive function has to be applied; specific subdomains, for example, relatively narrow realms of memory seem to have a limited influence when examined on their own.

SS3.3. Concepts of autonomy in person-centered dementia care and its relevance for social health

SERBSER Jonathan, DREYER Jan, ROES Martina

Background: To self-manage life characterizes a main dimension of social health, and is directly connected to questions of autonomy and self-determination. In the context of dementia, achieving a self-determined life appears to be difficult. From a professional perspective person-centered care promise to encounter this challenge, and provide ways how to facilitate people living with dementia, including their social network. One principal aim of person-centered care is to sustain autonomy. This literature review aims to answer the question in what way(s) concepts of autonomy and self-determination are defined within person-centered care, and how these concepts can be linked to the dimension of social health.

Method: For an ongoing scoping review eight international databases were systematically searched for person-centeredness and dementia. Based on these results (n=601, independently checked by two researchers) a 2nd search focusing on autonomy and self-determination within person-centeredness and dementia was conducted. A conceptual analysis was performed with MAXQDA guided by a theoretical framework to classify the findings.

Results: The literature review revealed that autonomy is an important topic for person-centered approaches. Nevertheless, autonomy and self-determination, and therefore self-management, are conceptualized in dissimilar ways, as they depend on different perspectives on personhood in dementia. Although, detailed descriptions of personhood are missing.

Conclusion: This literature review provides clarification within the social health discourse in dementia by identifying conceptual overlaps between different conceptions of autonomy, self-determination and personhood. Moreover, these results help to consolidate an understanding of social health by emphasizing the importance of societal attribution and the perception of personhood.

SS3.4. Charting new territory: measuring outcomes that have meaning

WOODS Robert, MONIZ-COOK Esme, ØKSNEBJERG Laila and members of the INTERDEM JPND outcomes working group

The dramatic increase in the volume of research evaluating psychosocial interventions for people with dementia and their supporters makes it now possible to identify evidence-based interventions that can be recommended and perhaps funded. Facilitating this step-change was the development of self-report quality of life scales for people with dementia. This was only possible through the change of attitude, that belatedly recognized that many people with dementia are perfectly capable of giving a consistent and clear account of life from their perspective. This perspective may be different from that of others around them, but this does not render it invalid.

It is tempting to continue to use the quality of life scales that have been developed and which have already proved useful. However, their limitations must be recognized if we are to understand better what outcomes are meaningful for people living with dementia. These limitations include: the provision of standard domains, implicitly assuming that each of us weighs the different facets of our lives in the same way, and that we all attach importance to the same things; the strong influence of long-standing factors, such as strength of self-concept and quality of relationships; and the inherent difficulty in understanding how immediate day-to-day factors in our surroundings balance against future plans and expectations and past achievements and regrets. A person-centred approach requires us to seek to understand the complexity of factors that feed into quality of life and well-being. This paper explores three promising areas for development: firstly, using more frequent, momentary assessment to tap into day-to-day fluctuations in well-being, and associated factors; the development of individualized outcomes, allowing each person to say what would be ‘good’ for them; and methods for helping the person draw together the raw data about their situation before making the evaluative judgements that scales require.

SS3.5. Social health in dementia:  operationalization of the concept and directions for research and practice

DRÖES Rose-Marie, CHATTAT Rabih, GRAFF Maud, MURPHY, Kathy, VERBEEK Hilde, VERNOOIJ-DASSEN Myrra, JOHANNESSEN Aud, CHARRAS Kevin, on behalf of the Interdem Social Health Task Force

Background: Dementia greatly impacts the lives of people living with it. A variety of factors determines how people adapt to the changes dementia entails. Recently, Huber et al. (2011) proposed reformulating the WHO definition of Health (‘complete physical, mental and social wellbeing’) towards a more dynamic one based on the ability to physically, mentally and socially adapt and self-manage. To operationalize this new health concept, more specifically the social domain, for people with dementia, and formulate directions for research and practice, INTERDEM (a European network of researchers focusing on timely psychosocial interventions) installed a special taskforce. The results of this collaborative action are presented.

Method: A first survey among members of the INTERDEM Social health task force (n=54) clarified their expertise in dementia research regarding the three Social Health dimensions described by Huber et al.: 1) the capacity to fulfil one’s potential and obligations; 2) the ability to manage life with some degree of independence; 3) participation in social activities. Of the 43 respondents 84% had conducted research on Social Health. Based on their expertise, theme groups were formed that each worked on operationalizing one of the Social Health dimensions by means of a second survey and literature study. During a consensus meeting, the results were discussed, and after that submitted for review to the European Working Group of People with Dementia (EWGPWD).

Results: The dimensions of social health were well operationalized for dementia and very relevant according to both the Social health task force and the EWGPWD. Factors that may influence the person with dementia’s social health are e.g. increasing cognitive disabilities, coping ability, living situation, accessibility to social activities and a dementia friendly supportive social and physical environment. For each dimension interventions promoting social health, and knowledge gaps needing further investigation, were identified.

Conclusion: The concept of Social Health with its three dimensions appears very relevant for people with dementia and helps to identify factors influencing aspects of social health and effective interventions. Identified gaps indicate the need for further research and practice development.

 

 
 

Last Updated: Tuesday 10 January 2017

 

 
  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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