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“Doing things together”: Towards a health promoting approach to couples’ relationships and everyday life in dementia
Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Linköping University, Faculty of Medicine and Health Sciences.
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Abstract [sv]

Bakgrund: Majoriteten av personer med demens bor i sitt eget hem och ofta tillsammans med sin partner som blir en informell vårdgivare. Relationens kvalitet och känsla av parskap hotas ofta till följd av övergången från en ömsesidig beroenderelation till en vårdgivare-vårdtagar-relation allt eftersom demenssjukdomen fortskrider. Detta kan innebära många negativa konsekvenser. Stöd för par där ena partnern har demens delas ofta upp i olika former för personen med demens och för partnern utan demens, vilket innebär att det saknas parbaserat resursorienterat stöd med inriktning på att främja parrelationen och parets vardagliga liv.

Syfte: Syftet med denna avhandling är att utforska parcentrerade interventioner inom demens och att utveckla och testa ett parbaserat, salutogent och resursorienterat stöd för par där ena partnern har en demenssjukdom och som bor tillsammans i det egna hemmet.

Metoder och fynd: Denna avhandling består av tre delar. Den första delen att utforska inkluderar två länkade litteraturöversikter, en narrativ översikt och en kartläggande översikt (studie I) som beskriver tidigare interventioner för par som lever med demens och varför de genomförts. Resultaten av översikterna visade ett kunskapsgap i, och ett behov av lättillgängligt stöd som riktar sig till parförhållanden, parens resurser och att främja det vardagliga livet. Den andra delen, att skapa (studie II) involverar utvecklingen av ett lättillgängligt resursorienterat och parbaserat stöd. Det första steget var att identifiera prioriterade ämnen för en sådan intervention tillsammans med par som lever med demens, genom en så kallad medforskarprocess. Detta inkluderade en omfattande litteraturgenomgång, intervjuer med par där ena partnern har demens, och konsultationsmöten med expertgrupper bestående av personer med demens och partners i Sverige och i Storbritannien. Medforskarprocessen och expertmötena resulterade i fyra huvudteman med motsvarande underteman vilka par med demens ansåg vara viktiga för deras relation och för välbefinnande i vardagen: (1) Hem och grannskap, (2) Meningsfulla aktiviteter och relationer, (3) Förhållningssätt och empowerment och (4) Parskap. Dessa teman vidareutvecklades och integrerades i multimedia-applikationen DemPower, som utvecklades i syfte att erbjuda interventionen till par som lever med demens.

Den tredje delen att testa och att utvärdera beskriver genomförbarhetsstudien (studie III) där applikationen DemPower testades med avseende på genomförbarhet och acceptabilitet hos par där en partner har demens i Sverige och i Storbritannien. Resultaten av studien visade att DemPower-interventionen var genomförbar och acceptabel bland par där ena partnern har demens. Denna delen av avhandlingen inkluderar även en kvalitativ studie (studie IV) som undersökte parens erfarenheter av att testa DemPower tillsammans som ett par. De samlade upplevelserna resulterade i tre teman: (1) Utveckling av parrelationen, (2) Vi är inte ensamma och (3) Positivt förhållningssätt. De övergripande resultaten från avhandlingen presenteras även i en konkluderande syntes i slutet av avhandlingen. Den konkluderande syntesen med fokus på Meningsfullhet, Empowerment, Normalisering och Parskap representerar kärnan i denna avhandling.

Avhandlingens slutsatser och kunskapsbidrag: DemPower-applikationen med fokus på parförhållanden, hälsofrämjande resurser och vardagen har bidragit med ett stöd som vilar på en genuin parbaserad grund tillämpad i det vardagliga livet för par som lever med demens. Denna avhandling bidrar även med kunskap till forskning, vård och allmänheten genom att lyfta fram ett salutogent förhållningssätt till par som lever med demens. Som forskare, vårdpersonal och allmänhet bör vi stödja par där ena partnern har demens för att de ska kunna fortsätta leva ett så normalt liv som möjligt. Detta kan bäst uppnås genom att fokusera på parens resurser, genom inkludering och genom att värdera dem som experter inom demensforskning och i deras livserfarenheter.  

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2020. , p. 84
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1729
Keywords [en]
Couplehood, Dementia, Everyday life, Intervention, Salutogenesis
Keywords [sv]
Demens, Det vardagliga livet, Intervention, Parskap, Salutogenesis
National Category
Gerontology, specialising in Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-164273DOI: 10.3384/diss.diva-164273ISBN: 9789179299101 (print)OAI: oai:DiVA.org:liu-164273DiVA, id: diva2:1414521
Public defence
2020-04-03, K1, Kåkenhus, Campus Norrköping, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Note

Forskningsfinansiärer: Economic and Social Research Council (ESRC), National Institute for Health Research (NIHR) and the County Council of Östergötland, Linköping University from its strategic research fund for Health and Welfare.

Available from: 2020-03-13 Created: 2020-03-13 Last updated: 2020-03-13Bibliographically approved
List of papers
1. A review of couple-centred interventions in dementia: Exploring the what and why - Part A
Open this publication in new window or tab >>A review of couple-centred interventions in dementia: Exploring the what and why - Part A
2019 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 18, no 7-8, p. 2436-2449Article, review/survey (Refereed) Published
Abstract [en]

Introduction Symptoms of dementia bring about challenges to couples relationships. Relationship-focused support has been highlighted to be of significant importance for sustained relationship quality and to reduce the negative impact of dementia on the dyadic relationship. This review aimed to explore the what and why of interventions aimed at couples where one partner has a diagnosis of dementia and in which the couple jointly participate. Method Searches were performed in Academic Search Premier, CINAHL, PsycINFO, PubMed, Scopus and Web of Science from January 2000 to August 2017. Results Six studies were included. Objectives for the person with dementia was related to cognitive function and for the care partner the objectives were related to well-being. The majority of the outcomes were mirrored by the objectives and focused on cognitive function for people with dementia and depression and relationship quality for care partners. Our findings indicate that people with dementia should be included in the assessment of the relationship in order to gain an overall picture of relationship dynamics and to increase tailored support in couple-centred interventions. Conclusions The findings of this review indicate that joint interventions for people with dementia and care partners are lacking a genuine dyadic approach where both partners views of their relationship are valued. In order to identify targets for support and to use the appropriate outcome measures, the quality of the relationship should be recognised and taken into account. Moreover, there is a lack of a salutogenic approach in couple-centred interventions in which couples strengths and resources can be identified and supported.

Place, publisher, year, edition, pages
SAGE PUBLICATIONS LTD, 2019
Keywords
caregiver; dementia; mild cognitive impairment; review; spouses
National Category
Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-160998 (URN)10.1177/1471301217737652 (DOI)000485953300002 ()29096533 (PubMedID)
Available from: 2019-10-31 Created: 2019-10-31 Last updated: 2020-03-13
2. Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia
Open this publication in new window or tab >>Living Life and Doing Things Together: Collaborative Research With Couples Where One Partner Has a Diagnosis of Dementia
Show others...
2018 (English)In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 28, no 11, p. 1719-1734Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
SAGE PUBLICATIONS INC, 2018
Keywords
couples; collaborative research; dementia; salutogenesis; self-management; Sweden; thematic analysis; UK
National Category
Other Social Sciences not elsewhere specified
Identifiers
urn:nbn:se:liu:diva-151196 (URN)10.1177/1049732318786944 (DOI)000442412400004 ()30033851 (PubMedID)
Available from: 2018-09-17 Created: 2018-09-17 Last updated: 2020-03-13

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