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SS3: INTERDEM: Social Health

Detailed programme, abstracts and presentations

SS3.3. Social participation and dementia: a descriptive qualitative study from the perspective of persons with cognitive problems and their caregivers


Introduction: Social participation is of great importance as part of successful and healthy aging, since it is associated with physical and mental health and well-being. The aim of the current study was to explore how community-dwelling older people with cognitive problems and their caregivers (dyads) perceive social participation and which factors are perceived as influencing. 

Methods: In this qualitative study we performed thirteen semi-structured, in-depth interviews with dyads. The interviews were thematically analysed through a content analysis.

Results: All dyads indicated a decrease in social participation. This reduction applied to all people with cognitive problems and for most caregivers who were married, and to a lesser extent for the non-spouse caregivers. The majority of both the people with cognitive problems and their caregivers was satisfied with their own level of social participation. However, most caregivers tended to be dissatisfied with the social participation level of the persons they cared for. The analysis of the interviews resulted in five themes of influencing factors for social participation: (1) behavioural factors; (2) physical factors; (3) social environmental factors; (4) physical environmental factors; (5) activity related factors. 

Discussion: While most non-spouse caregivers tried to improve the level of social participation, spouse caregivers and people with cognitive problems generally lowered their expectations and expressed feelings of acceptance or satisfaction with their own level of social participation. The discrepancy between satisfaction with social participation among caregivers and the people they care for, results in tension regarding respecting individuals’ autonomy and the prevention of negative heath consequences associated with reduced social participation.

SS3.4. Decisions in the lives of people with dementia: differences between those living alone and those living with their informal caregiver


Objectives: The erratic course of dementia makes the dementia trajectory unpredictable and leads to uncertainty. The changing situation of people with dementia requires many decisions over time. However, empirical evidence about what decisions are made when is lacking. This evidence is necessary for a proactive support of people with dementia. We aim to provide insight into dementia trajectories by studying what decisions are made, and when, from the perspectives of the care networks of people with dementia.

Methods: In this longitudinal multi-perspective study, we interviewed 113 respondents three times in 12 months (285 interviews). The respondents belonged to 23 care networks including people with dementia, their informal caregivers and professionals. Our analysis was multi-layered: 1) We determined the decisions made in our care networks using content analysis. 2) We built timelines placing the decisions of each care network in chronological order. 3) We used constant comparison to determine patterns in the content and sequence of decisions made.

Results: Our analysis show four themes of decisions in care networks of people with dementia: 1) managing daily life, 2) arranging health care and support, 3) living in society, and 4) preparing for the future. We found differences in the content and sequence of decisions between people with dementia living alone and those living with their informal caregiver. From this observation we developed two distinctive decision trajectories including marks to which certain types of decisions could be related. Examples of marks in those living alone are safety concerns, safety incidents and hospitalization. Examples of marks related to people with dementia living together are inactivity of the person with dementia and overburden of the informal caregiver.

Conclusion: The differences in content and sequence of decisions made in care networks of people with dementia living alone and those living with their caregiver require a different approach in preparing for decisions that lie ahead.

SS3.5. How accessible are grocery shops for people with dementia? A qualitative study


People with dementia who live in ordinary housing need to perform activities outside home such as visiting friends, talking walks and doing grocery shopping. This study identifies and examines characteristics that may influence accessibility in the space of a grocery shop as perceived by people with dementia. A grounded theory approach was used in the data collection and analysis (photo documentation and focus groups interviews with informants with dementia). The categories “illogical arrangement”, “overload of products”, “information and people”, “visual illusions” and “intrusive auditory stimuli” showed characteristics in the grocery shop that influenced on how accessible and usable the informants experienced a shop to be. Further, personal capacities, i.e. capacity to find, stay focused and concentrated, meet stress, remember, interpret and discriminate sensory impressions through hearing and sight, also came to the fore as important.Such characteristics of both the shop and the person need to be taken into account when supporting people with dementia in maintaining participation in social activities such as grocery shopping.

This study is one of 4 sub-studies in Anna Brorsson’s PhD-thesis; Access to everyday activities in public space: Views of people with dementia. Karolinska Institutet, Stockholm, Sweden, 2013. (This sub-study is submitted but not yet published):

It is also part of an ongoing international project “Access to and usability of places and activities in public space”, led by Louise Nygård, Professor, Karolinska Institutet.

SS3.6. Narrative care: discussing the impact and benefits of an individual life review intervention for older persons with and without dementia


Introduction: Many older persons suffer from depressive feelings. It is important to recognize sub-threshold depression and to prevent the development of major depression, however, preventive strategies do not specifically focus on frail older adults.

In Brussels (Belgium), a community mental health care team developed an individual life review intervention where life story writers visit frail older persons at home. In about 12 thematic sessions the older person is encouraged to tell his/her life story. The life story writer facilitates the life review process and at the end a life story book and individual ‘identity circle’ is handed to the participant.

Aims: This presentation will first present the results of the effectiveness study we conducted on ‘Narrative Care’. It was hypothesized that Narrative Care diminishes the feelings of depression, anxiety and loneliness and enhances the feelings of mastery, self-esteem and resilience. Second, we will discuss the possibilities of ‘Narrative care’ for older persons with dementia.

Methods: In a pretest-posttest design we investigated the impact on depressive feelings, loneliness, anxiety, mastery, self-esteem and resilience in participants of Narrative Care. These concepts are measured with self-report questionnaires, administered by the life story writers at home with the participants. Qualitative interviews were performed with participants, including two children of persons with dementia who had entered the nursing home after the intervention.

Results: The intervention has a large number of drop-out of participants, mainly because of their frailty and old age. Non-response-analysis shows no differences between the initial group and the group that completed the whole interventions and both measurements. Significant effects on the self-esteem and anxiety scale were found in the 44 persons that completed both measurements. Participants feel less anxiety and more self-esteem after completion of the sessions than before. No significant effects were found for depression, loneliness, mastery and resilience. Both nursing home staff and the children of the persons with dementia found the life story book and identity circle of Narrative Care a valuable method for smoothening the transition from home to the nursing home.

Conclusions: Anxiety reduction is known as an effect of participation in a life review intervention. Contrary to the expectations no effect was found on depressive feelings. This study has methodological limitations (e.g. no control group, no blind measurements), however, it is promising that through attention for the individual life story it is possible to strengthen the identity and feelings of self-esteem of frail older persons. Future studies with more rigorous design and methods and with specific attention to persons with dementia are warranted.



Last Updated: Monday 28 September 2015


  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene