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- Bielsten, Therése, 1978-, et al.
(författare)
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Couples’ experiences of using DemPower in everyday life
- 2020
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Ingår i: Quality in Ageing and Older Adults. - : Emerald Group Publishing Limited. - 1471-7794. ; 21:3, s. 169-180
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Tidskriftsartikel (refereegranskat)abstract
- Purpose – Interventions aimed at couples where one partner has dementia are often targeting burden, depression and cognitive function and do not focus on relationship and interpersonal issues. Furthermore, interventions within this population do not seem to have embraced a salutogenic and authentic dyadic approach where both partners’ experiences are considered. To address this gap, a self-management app, DemPower, which was piloted and tested among couples where one partner has dementia living at home, has been developed. This study explores couples‘ everyday experiences of engaging with the DemPower.Design/methodology/approach – Semi-structured interviews with couples were analysed using thematic analysis.Findings – The findings resulted in the following themes: growth of the relationship; we are not alone; and positive approach. The findings indicated that the experiences of a salutogenic and dyadic intervention can contribute to the feelings of empowerment, satisfaction of couples’ achievements and a sense of support through peers and with the intervention itself.Originality/value – The findings of this study indicate that couples where one partner has dementia appreciate interventions that focuses on a salutogenic approach to their everyday life and relationship. The dyadic intervention contributed to feelings of empowerment, satisfaction of couples’ achievements and a sense of support through peers and through the intervention itself. Discussing, inventory and focus on strengths, resources and quality of life can therefore give couples insight in their growth of the relationship and their transitions during the dementia trajectory. Furthermore, this study can serve as an eye opener in health care for the type of support couples need and wishes to receive. This means that care for people with dementia and partners should adopt a more health-promoting approach.
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| 2. |
- Bielsten, Therése, 1978-
(författare)
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“Doing things together” : Towards a health promoting approach to couples’ relationships and everyday life in dementia
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Most people with dementia live in their own homes, often together with their partners, who become informal caregivers. Relationship quality and sense of couplehood can be threatened as a result of the transition from a mutually interdependent relationship to a caregiver-care-receiver relationship. This, in turn, may lead to many negative consequences for both partners. Support provided for couples is often divided into different types for the person with dementia and for the partner without dementia and lacks couple-based support that targets the relationship, resources and the couple’s everyday life together. Aim: The overall aim of this thesis is to explore couple-centred interventions in dementia and to develop and test a salutogenic, resource-oriented and couple-based intervention among couples in which one partner has dementia living at home. Methods and findings: This thesis comprises three parts: The first part Exploring involves two linked reviews, one narrative review (study I A) and one scoping review (study I B) that aim to identify and describe what previous couple-centred interventions comprised and why they were conducted. The results of the reviews revealed a knowledge gap in and a need for easily accessible support that targets couple relationships, resources and everyday life. The second part Developing (study II) refers to the development of an easily accessible resource-oriented couple-management intervention. The first step was to identify priority topics for such an intervention through a co-researcher process with couples living with dementia. This included a comprehensive literature review, interviews with couples in which one partner has dementia, and consultation meetings with expert groups of people with dementia and partners in both Sweden and the UK. The co-researcher process and the expert meetings informed four main themes with corresponding sub-themes that couples with dementia considered as important to their wellbeing in their everyday lives: (1) Home and Neighbourhood, (2) Meaningful Activities and Relationships, (3) Approach and Empowerment, and (4) Couplehood. The themes were further developed and integrated into the multimedia application DemPower, which was developed for the delivery of the intervention. The third part Testing and Evaluating describes a feasibility study (study III) in which the DemPower application was tested for feasibility and acceptability among couples in Sweden and the UK. The results of the feasibility study indicated that the DemPower intervention was feasible and acceptable among couples in which one partner has dementia living at home. The testing and evaluating part also comprise a qualitative study (study IV) that explores the experiences of engaging with DemPower together as a couple living with dementia in Sweden. The findings resulted in the three themes: (1) Growth of the relationship, (2) We are not alone, and (3) Positive approach, which the couples appreciated and associated with the resource-oriented and salutogenic approach of DemPower. The overall findings of the thesis are presented in a concluding synthesis at the end of the thesis. The concluding synthesis, focused on “Meaningfulness”, “Empowering health promotion”, “Normalization” and “Transitions and couplehood”, represents the core findings of this thesis. What this thesis adds: This thesis contributes to research, healthcare and the public by highlighting the need for a salutogenic approach toward couples living with dementia. The DemPower application, with its focus on couples’ relationships, resource-orientation and everyday life, has proven feasibility and acceptability and has meaningfully addressed a gap in the literature and in practice. As researchers, healthcare professionals and the public, we need to support couples where one partner has dementia to continue to live as normal life as possible. This can best be achieved by focusing on what couples can do, by inclusion and by valuing them as the experts within dementia research and of their life experiences.
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| 3. |
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| 4. |
- Bielsten, Therese, et al.
(författare)
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Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia
- 2018
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Ingår i: Qualitative Health Research. - : SAGE PUBLICATIONS INC. - 1049-7323 .- 1552-7557. ; 28:11, s. 1719-1734
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study is to identify relevant content for a self-management guide by using the outcomes of previous research in combination with knowledge and experiences from couples where one partner has a diagnosis of dementia. The study was carried out in three phases: (a) literature search of previous research related to well-being and couplehood in dementia; (b) interviews with couples with dementia based on the findings of the literature search; and (c) further authentication of the findings within expert groups of people with dementia and carers. For analysis of data, we used a hybrid approach of thematic analysis with combined deductive and inductive approaches. The findings of this study indicated that the four main themes Home and Neighborhood, Meaningful Activities and Relationships, Approach and Empowerment, and Couplehood with related subthemes could be appropriate targets for a self-management guide for couples where one partner has a diagnosis of dementia.
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| 5. |
- Campbell, Sarah, et al.
(författare)
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'I can see what's going on without being nosey…' : What matters to people living with dementia about home as revealed through visual home tours.
- 2023
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Ingår i: International Journal of Geriatric Psychiatry. - : John Wiley & Sons. - 0885-6230 .- 1099-1166. ; 38:9
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities.METHODS: Forty-six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis.RESULTS: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia.DISCUSSION: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home.
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| 6. |
- Campbell, Sarah, et al.
(författare)
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Participatory social network map making with family carers of people living with dementia
- 2019
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Ingår i: Methodological Innovations. - : SAGE Publications Ltd. - 2059-7991. ; 12:1
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Tidskriftsartikel (refereegranskat)abstract
- This article focuses on the use of a participatory social network mapping method with family carers. This is one of a suite of methods developed in a 5-year qualitative multi-centre project exploring how neighbourhoods support, enable or disable people with dementia and their families to live well in their communities. The article considers how mapping provides insights into family support networks, revealing the fluidity of support and care within relationships as well as providing opportunity for individuals to represent the complexities of their relationships with more and less significant others. However, the potential offered by the approach goes beyond those of visual representations of networks and contacts. Paying attention to the co-production process, as well as the reflexive dialogue that emerges in the exchange between researcher, participants, and the maps themselves, we consider how the maps emerge as affective artifacts, weighted with emotion.
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| 7. |
- Clark, Andrew, et al.
(författare)
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Neighbourhoods as relational places for people living with dementia
- 2020
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Ingår i: Social Science and Medicine. - Amsterdam, Netherlands : Elsevier. - 0277-9536 .- 1873-5347. ; 252
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Tidskriftsartikel (refereegranskat)abstract
- An increase in the number of people living independently with dementia across the developed world has focused attention on the relevance of neighbourhood spaces for enabling or facilitating good social health and wellbeing. Taking the lived experiences and daily realities of people living with dementia as a starting point, this paper contributes new understanding about the relevance of local places for supporting those living with the condition. The paper outlines findings from a study of the neighbourhood experiences, drawing on new data collected from a creative blend of qualitatively-driven mixed methods with people living in a diverse array of settings across three international settings. The paper details some of the implications of neighbourhoods as sites of social connection based on material from 67 people living with dementia and 62 nominated care-partners. It demonstrates how neighbourhoods are experienced as relational places and considers how people living with dementia contribute to the production of such places through engagement and interaction, and in ways that may be beneficial to social health. We contend that research has rarely focused on the subjective, experiential and ‘everyday’ social practices that contextualise neighbourhood life for people living with dementia. In doing so, the paper extends empirical and conceptual understanding of the relevance of neighbourhoods as relational sites of connection, interaction, and social engagement for people living with dementia.
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| 8. |
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| 9. |
- Harding, Andrew J. E., et al.
(författare)
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Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions
- 2018
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Ingår i: Trials. - : BIOMED CENTRAL LTD. - 1745-6215. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- Background: The key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia. Methods/design: Drawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design: 1 Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes. 2 Two rounds of Delphi surveys will be used with key stakeholder groups. Statements for the Delphi surveys and participation processes will be developed and informed through substantial member involvement with people living with dementia and care partners. A consensus meeting will be convened with key participant groups to discuss the key findings and finalise the COS. 3 A systematic literature review will be undertaken to assess the properties of tools and instruments to assess components of the COS. Measurement properties, validity and reliability will be assessed using the Consensus-based Standards for the Selection of Health Measurement (COSMIN) and COMET guidance. 4 A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS. Discussion: To the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions.
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| 10. |
- Harding, Andrew J. E., et al.
(författare)
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What is important to people living with dementia?: the "long-list of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions
- 2019
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Ingår i: BMC Geriatrics. - : BMC. - 1471-2318. ; 19
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundCore outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a long-list of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a long-list of outcome items for non-pharmacological interventions for people with dementia living at home.MethodsThree iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n=55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n=124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the long-list in eight workshops.ResultsOne hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood amp; Home, Independence).ConclusionsThis paper presents a transparent blueprint for long-list development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.
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