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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. |
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| 3. |
- 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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| 4. |
- 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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| 5. |
- Lasrado, Reena, et al.
(författare)
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Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower) : Protocol for a Nonrandomized Feasibility Trial.
- 2018
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Ingår i: JMIR Research Protocols. - : JMIR Publications Inc.. - 1929-0748. ; 7:8
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The increasing rate of dementia and high health and social care costs call for effective measures to improve public health and enhance the wellbeing of people living with dementia and their relational networks. Most postdiagnostic services focus on the condition and the person with dementia with limited attention to the caring spouse or partner. The key focus of the study is to develop a guide for couples where one partner has a diagnosis of dementia. This couple management guide is delivered in the form of an app, DemPower.OBJECTIVE: This study aims to investigate the feasibility and acceptability of DemPower and to assess the criteria for a full-integrated clinical and economic randomized control trial. DemPower couple management app will be introduced to couples wherein one partner has dementia.METHODS: The study will recruit 25 couples in the United Kingdom and 25 couples in Sweden. Couples will be given 3 months to engage with the app, and the amount of time taken to complete the guide (can be <3 or >3 months) will be reviewed. A set of outcome measures will be obtained at baseline and postintervention stages.RESULTS: The proposed study is at the recruitment phase. The DemPower app is being introduced to couples from consultation groups at a pretrial phase for identifying any bugs and exploring if any navigation challenges exist. The feasibility testing will begin in April 2018.CONCLUSIONS: The study will determine how much support couples need to engage with DemPower and whether or not they make use of it in their everyday lives. If there is support for app use, a future study will assess whether it is superior to "usual care."TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN): 10122979; http://www.isrctn.com/ISRCTN10122979 (Archived by WebCite at http://www.webcitation.org/70rB1iWYI).REGISTERED REPORT IDENTIFIER: RR1-10.2196/9087.
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