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Linköping University Medical Dissertation No. 1729 “Doing things together” Towards a health promoting approach to couples’ relationships and everyday life in dementia Therése Bielsten  Linköping University Medical Dissertation No. 1729 “Doing things together” Towards a health promoting approach to couples’ relationships and everyday life in dementia Therése Bielsten Division of Nursing Sciences and Reproductive Health Department of Health, Medicine and Caring Sciences Linköping University, Sweden Norrköping 2020  ãTherése Bielsten, 2020 Cover: Tony Husband Published article has been reprinted with the permission of the copyright holder. Printed in Sweden by LiU-Tryck, Linköping, Sweden, 2020 ISBN 978-91-7929-910-1 ISSN 0345-0082  To my grandfather Ragnar Bielsten   Contents 1 CONTENTS CONTENTS ............................................................................................... 1 LIST OF TABLES AND FIGURES......................................................... 3 ABSTRACT................................................................................................ 5 ORIGINAL PAPERS.................................................................................. 9 PREFACE ................................................................................................ 11 1. INTRODUCTION................................................................................. 13 2. BACKGROUND ................................................................................... 15 2.1. People living with dementia............................................................ 15 2.2. Couples living with dementia.......................................................... 17 2.3. Personhood and Couplehood........................................................... 18 2.3.1. Personhood .................................................................................18 2.3.2. Couplehood.................................................................................19 2.4. Potential challenges to couples´sense of couplehood ......................... 20 2.5. Experiences of couples living with dementia .................................... 21 2.6. Salutogenesis in dementia............................................................... 22 2.7. Research context of this thesis......................................................... 23 2.7.1 Collaborative research..................................................................24 3. RATIONALE........................................................................................ 27 4. AIMS .................................................................................................... 29 5. THEORETICAL FRAMEWORK......................................................... 31 5.1. The theory of everyday life............................................................. 31 5.2. First- and second-order constructs of everyday life............................ 32 5.3. Significant concepts of this thesis.................................................... 32 5.3.1. Salutogenesis ..............................................................................32 5.3.2. Transition....................................................................................33 6. METHODS & ANALYSIS .................................................................... 35 6.1. Exploring ...................................................................................... 36 6.1.2. Methods......................................................................................36 6.1.3. Analysis......................................................................................37 6.2. Developing.................................................................................... 38  Contents 2 6.2.1. Methods......................................................................................38 6.2.2. Analysis......................................................................................39 6.3. Brief description of DemPower ....................................................... 40 6.4. Testing and Evaluating................................................................... 43 6.4.1. Methods......................................................................................43 6.4.2. Analysis......................................................................................45 7. ETHICAL CONSIDERATIONS ........................................................... 47 8. RESULTS AND FINDINGS.................................................................. 49 8.1. Exploring ...................................................................................... 49 8.2. Developing.................................................................................... 49 8.3. Testing and Evaluating ................................................................... 50 9. OVERALL FINDINGS AND DISCUSSION BY MASTER THEMES ... 53 9.1. Dimensions of meaningfulness........................................................ 54 9.1.1. Meaningfulness of couple-centred interventions..........................54 9.1.2. Meaningfulness in the everyday life............................................56 9.1.3. Meaningfulness in taking part in research ...................................56 9.2. Empowering health promotion ........................................................ 57 9.2.1. Health promotion in dementia care..............................................58 9.2.2. The influence of society on couples with dementia......................59 9.3. Normalization................................................................................ 61 9.4. Transitions and Couplehood............................................................ 62 10. METHODOLOGICAL CONSIDERATIONS ..................................... 65 10.1. Validity and reliability.................................................................. 65 10.2. Trustworthiness............................................................................ 66 11. CONCLUSION AND IMPLICATIONS .............................................. 69 11.1. Conclusion .................................................................................. 69 11.2. Implications................................................................................. 69 11.2.1. Implications for research...........................................................69 11.2.2. Implications for healthcare........................................................70 11.2.3. Implications for the public ........................................................70 12. ACKNOWLEDGEMENTS ................................................................. 71 REFERENCES......................................................................................... 73 APPENDIX I APPENDIX II  Contents 3 LIST OF TABLES AND FIGURES Tables Table 1. Overview of designs and methodologies........................................................ 35 Table 2. Co-researchers´characteristics (study II)………………………………………39 Table 3. Content of DemPower (study III) .................................................................. 41 Table 4. Thematic analysis (study IV)………………………………………………….45 Table 5. Shortened table of couples´characteristics (study III)..................................... 51 Figures Figure 1. Screenshots of DemPower (study III)........................................................... 43 Figure 2. Confirmed themes and added theme (study II) ............................................. 50 Figure 3. Concluding synthesis by master themes ....................................................... 53   Abstract 5 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 cou- plehood 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 neg- ative 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 eve- ryday 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 in- volves 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 com- prised 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-re- searcher 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 Relation- ships, (3) Approach and Empowerment, and (4) Couplehood. The themes were further developed and integrated into the multimedia application DemPower, which was devel- oped 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 cou- ples 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  Abstract 6 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”, “Em- powering health promotion”, “Normalization” and “Transitions and couplehood”, rep- resents 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 ad- dressed 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. Keywords: Couplehood, Dementia, Everyday life, Intervention, Salutogenesis  Sammanfattning 7 SAMMANFATTNING Bakgrund: Majoriteten av personer med demens bor i sitt eget hem och ofta tillsam- mans 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 in- nebära 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 par- relationen 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 över- sikt (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 pri- oriterade ämnen för en sådan intervention tillsammans med par som lever med demens, genom en så kallad medforskarprocess. Detta inkluderade en omfattande litteraturgenom- gång, intervjuer med par där ena partnern har demens, och konsultationsmöten med ex- pertgrupper bestående av personer med demens och partners i Sverige och i Storbritan- nien. Medforskarprocessen och expertmötena resulterade i fyra huvudteman med motsva- rande underteman vilka par med demens ansåg vara viktiga för deras relation och för välbefinnande i vardagen: (1) Hem och grannskap, (2) Meningsfulla aktiviteter och relat- ioner, (3) Förhållningssätt och empowerment och (4) Parskap. Dessa teman vidareutveck- lades 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 (stu- die III) där applikationen DemPower testades med avseende på genomförbarhet och ac- ceptabilitet 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 kvali- tativ studie (studie IV) som undersökte parens erfarenheter av att testa DemPower till- sammans som ett par. De samlade upplevelserna resulterade i tre teman: (1) Utveckling av parrelationen, (2) Vi är inte ensamma och (3) Positivt förhållningssätt. De övergri- pande resultaten från avhandlingen presenteras även i en konkluderande syntes i slutet av  Sammanfattning 8 avhandlingen. Den konkluderande syntesen med fokus på Meningsfullhet, Empowerment, Normalisering och Parskap representerar kärnan i denna avhandling. Avhandlingens slutsatser och kunskapsbidrag: DemPower-applikationen med fo- kus 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 allmän- heten 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. Nyckelord: Demens, Det vardagliga livet, Intervention, Parskap, Salutogenesis  Original papers 9 ORIGINAL PAPERS This thesis is based on five scientific articles which are presented in four studies. The studies are referred to in the text by their Roman numerals: I. Bielsten, T., & Hellström, I. (2019). A review of couple-centred interventions in dementia: Exploring the what and why — Part A. Dementia: The International Journal of Social Research and Practice, 18, 2436–2449. Bielsten, T., & Hellström, I. (2019). An extended review of couple-centred inter- ventions in dementia: Exploring the what and why — Part B. Dementia: The In- ternational Journal of Social Research and Practice, 18, 2450–2473. II. Bielsten, T., Lasrado, R., Keady, J., Kullberg, A., & Hellström, I. (2018). Liv- ing Life and Doing Things Together: Collaborative Research with Couples Where One Partner Has a Diagnosis of Dementia. Qualitative Health Research, 28, 1719–1734. III. Lasrado, R., Bielsten, T., Hann, M., Davies, L., Schumm, J., Reilly, S., Swarbrick, C., Dowlen, R., Keady, J., & Hellström, I. Feasibility and Accepta- bility of DemPower: A Couple Management App for Couples Where One Part- ner has a Dementia (submitted). IV. Bielsten, T., Keady, J., Kullberg, A., Lasrado, R., & Hellström, I. Couples expe- riences of using DemPower in everyday life (submitted). Prior to the feasibility study (study III), a protocol paper with the trial registration num- ber (ISRCTN) 10122979, was published and is attached to the thesis (appendix II): Lasrado, R., Bielsten, T., Hann, M., Davies, L., Schumm, J., Reilly, S., Swarbrick, C., Keady, J., & Hellström, I. (2018). Designing and implementing a home-based couple management guide for couples where one partner has dementia (DemPower): Protocol for a nonrandomized feasibility trial. Journal of Medical Internet Research, 20. Published articles have been reprinted with the permission of the copyright holder