Living with a partner with dementia: a systematic review and thematic synthesis of spouses' lived experiences of changes in their everyday lives

Figures & data

Table 1. Example of the systematic search, built in PsycINFO, illustrating a facet search, including facets 1, 2 and 3.

Facet 1	Facet 2	Facet 3
P: Spouses	I: Everyday life	Co: Dementia
Caregivers or Spouses or Couples or ‘Significant others’ as subject headings and Caregiv* or Spous* or Husband* or Wif* or Wiv* or Coupl* or ‘Spousal care*’ as free text	‘Daily activities’, ‘Life experiences’, ‘Life changes’ as subject heading and ‘Daily activitie*’ or ‘Everyday living*’ or Living* or ‘Life experience*’ or ‘Life Chang*’ as free text	‘Dementia+’ or ‘Alzheimer's disease’ as subject headings and Dement* or Alzheim* or “Senile dement*” as free text

Table 2. Methodological limits used in CINAHL, Cochrane, Embase, PubMed and Sociological Abstracts. Filters varied between the databases, illustrated in facet search as the fourth facet.

Facet 4
Methodological limits
Qualitative methods: ‘Qualitative studies+’ or ‘Focus Groups’ or ‘Interviews+’ or ‘Narratives’ or ‘Life Histories’ or ‘Observational Methods+’ or ‘Biographies’ as subject headings and ‘qualitative stud*’ or ‘qualitative research*’ or Biograph* or *Narrative* or ‘Life History*’

Table 3. Inclusion and exclusion criteria.

Inclusion and exclusion criteria
Population	Inclusion: Family and couple/dyads’ perspective, where focus is on a spousal perspective as a part of the study. Partners living together, which included cohabitants and spouses. Exclusion: Families’ or children's perspective that did not cover a spousal perspective as a part of the study. Specific focus on a gay perspective was excluded.
Phenomena of interest	Inclusion: The lived experience of everyday life
Context	Inclusion: Living with a partner, at home, in early stages of dementia, i.e. mild-to-moderate degree of dementia. Studies where the degree of dementia was unclear were included. Exclusion: Partners living in institutional care and/or with severe dementia and/or multiple diseases, families with children living at home
Characteristics of studies	Inclusion: Qualitative studies, published in English, from January 2007 until May 2017 Exclusion: Intervention studies.

Table 4. A reviw matrix of included studies.

	Author, Year, Country, Journal	Purpose	Methods Approach or Study design, Sample size, Participants and Context	Analytical strategy and Results
(1)	Hellström et al. (2007)	PwD and their spouses’ experiences of dementia over time and their impact on interpersonal relationships and patterns of everyday life.	A grounded theory methodology, consisting of 152 interviews with telephone follow-up (after three, nine and 15 months) over a period of five years Twenty couples, eight male and 12 female spouses, with a mean age of 76 years, who had been living together for between eight and 60 years (median = 49 years). Eight couples had been living together in private houses, and 12 had been living in flats.	A constructivist grounded theory methodology Data showed processes involved in changes over time, how couples managed changes especially in the early stages by maintaining the quality of and closeness in their relationship, and insights into how spouses maximise the quality of the relationship.
(2)	Vikström et al. (2008) Sweden Published in: Dementia	PwD and spouses’ experiences of mutual engagement in everyday activities	A qualitative interview Twenty-six cohabiting couples, 12 males spouses and 14 females spouses PwD were diagnosed as having mild-to-moderate dementia	A qualitative constant comparative analysis Data showed changes in everyday engagement, and the consequences of the changes, including dilemmas as well as management approaches for handling changed circumstances, loss of social engagements and changes in the relationship.
(3)	Quinn et al. (2008) United Kingdom Published in: Aging and Mental Health	Spouses’ experiences of their partner during early stages of dementia	Exploratory study using a qualitative methodology: individual semi-structured interviews. Thirty-four spouses or co-habiting partners, six men and 28 females, aged 52-80 years; early-stage dementia.	Analytical strategy, not reported Data showed changes and management in early-stage dementia, including difficulties in understanding the nature and meaning of diagnosis and condition, changes in the relationship, problems and challenges, and ways of coping.
(4)	Pretorius et al. (2009) South Africa Published in: Dementia	Males’ experiences of caregiving in dementia from a salutogenic perspective.	Qualitative research method, using semi-structured in-depth interviews. Ten white, middleclass male spouses, with a mean age 77	An orientational analysis approach, analysed in terms of Antonovsky's sense of coherence construct. Data showed various stressors that related to changes and how these stressors are managed, using problem-solving strategies rather than emotionally
(5)	Fjellström et al. (2010) Sweden Published in: American Journal of Alzheimer's Disease and Other Dementias	Spouses’ perception of everyday life aspects of food choices, cooking and food-related work.	Explorative focus group interviews Seventeen spousal caregivers, 11 women and six men	Analytical strategy not reported Data showed how spouses manage the changes brought about by dementia, including struggling with adopting or extending a new role in relation to food-related work.
(6)	O'Shaughnessy et al. (2010) United Kingdom Published in: Dementia	Spouses’ experiences of how cognitive decline impacts their relationships as a couple and meanings related to these experiences	A phenomenological approach using Interpretative Phenomenological Analysis (IPA), conducting semi-structured interviews with seven spouses, five wives and two husbands, aged 59-86 years, caring for their partners with mid-stage dementia at home.	Interpretative phenomenological analysis (IPA) Data showed changes and management related to changes in the marital relationship
(7)	Boylstein and Hayes (2012) United States of America Published in: Health & Social Care in the Community	Spouses’ experiences of reconstructing the meaning of closeness in their marriage.	A conceptual framework of narrative reconstruction In-depth interviews Twenty-eight spouses, 13 men, mean age 74, 15 women, mean age 61, caring for their partner who had primarily demonstrated symptoms of Stages II and/or III Alzheimer's disease (AD) for at least six months.	Analytical strategy not reported. Data shows spouses’ ability to reestablish a sense of marital closeness, although there were significant changes in social identity. Females were more likely than males to report that perceived changes in spouses’ identity altered their own identity within their marriage.
(8)	Lin et al. (2012) UK, Scotland Published in: Dementia	Spouses’ experiences of caregiving for a partner with dementia over time.	A longitudinal, grounded theory approach, involving in-depth interviews, with follow-up at six and eight months. Six cohabiting married couples, three wives and three husbands, aged 64-72 years, with a caregiving period of between six and 10 years.	A constant, comparative analysis Data showed spouses’ experienced life changes in relation to commitment, responsibility and duty, and support.
(9)	Boyle (2013) United Kingdom Published in: Journal of Applied Gerontological Society	Married couples’ experiences of managing finances and decision making	Qualitative design, ethnographic and creative methods, using participant observation and semi-structured interviews with spousal carer and unstructured interviews with the PwD. 21 married couples, 12 male spouses and 9 female spouses Dementia diagnosis varied from one to 12 years; some were in the early stages and some were in more advanced stages. Two-thirds of the couples occupied ‘higher’ social class positions: I, II and III .Non-manual. One-third were in ‘lower’ class positions: III Manual, IV and V. The sample was predominantly white British couples, but included one south Asian couple.	Thematic analysis Data showed that the ways in which couples manage finances are influenced by social factors and that gender had an influence on whether PwD were involved in financial decisions.
(10)	Ducharme et al. (2013) Canada Published in: American Journal of Alzheimer's Disease and Other Dementias	Spouses’ experiences of the disease trajectory when living with younger PwD	Qualitative design with principles from phenomenology Individual semi-structured interviews Twelve spousal caregivers, four male spouses and eight female spouses, living with partners with early-onset Alzheimer's disease or a related disorder, diagnosed before the age of 65	Analytical strategy not reported. Data showed various difficulties in managing dementia in early stages, e.g. managing behavioural and psychological symptoms, lengthy quest for diagnosis, nondisclosure to others and denial of diagnosis, grief for loss of spouse, midlife projects, difficulty juggling unexpected role and daily life responsibilities, and difficulty planning for future.
(11)	Madsen and Birkelund (2013) Denmark Published in: Journal of Clinical Nursing	Spouses’ and children's experiences of living with a PwD, focusing on similarities and differences between experiences	A phenomenological and hermeneutic approach, inspired by Kristi Maltereud's method, systematic text condensation (STC). Interviews, where 21 narratives stories were collected. Three husbands, aged 67-76, seven wives, aged 58-84, eight daughters, aged 45-63 and three sons, aged 38-59.	Systematic text condensation by Kirsti Malterud All family members experienced changes, grief and loss. Differences were found between family members. Sons found it easier to adapt to new roles and daughters found it more difficult. Husbands experienced being attacked by the people around them, while wives were found to submit their dementia-suffering husbands to physical abuse. The wives also suffered from self-criticism.
(12)	Massimo et al. (2013) USA Published in: Geriatric Nursing	Spouses’ perceived experiences of and responses to living with a person with FTD	Qualitative interviews as data collection method Two wives with a young age and high educational level. Duration of disease: at least two years.	Analytical strategy not reported. Data showed changes in relation to personality, lost adherence to social norms and emotional loss.
(13)	Shim et al. (2013) USA Published in: Applied Nursing Research	Spouses’ experiences of finding meaning in caregiving	Descriptive qualitative study Semi-structured interviews 11 spouses, five men and six women, aged 63-81 years. Spouses were self-selected, with at least one year's experience and at least three 3 h a day.	Thematic analysis Data showed that spouses found meaning in their caregiving experiences, and by believing in choosing their attitude and perceiving satisfaction in living according to their values in life.
(14)	Bergman et al. (2016) Sweden Published in: Medicine, Health Care and Philosophy: A European Journal	Spouses’ experiences of living with a partner with AD	A phenomenological framework – interpretative phenomenology In-depth interviews Ten spouses to persons with Alzheimer's’ disease (PwAD), at least a year after the diagnosis.	An interpretative phenomenology was conducted. Data showed changes in relation to the diagnosis where spouses felt physically and mentally imprisoned due to the changes, and managed their new circumstances by developing new strategies and attitudes to create an extended ‘‘lived space’’ with their partner.
(15)	Hellström et al., (2017) Sweden Published in: Scandinavian Journal of Caring Sciences	Male experiences of approaching the caregiver role over time	A secondary analysis of a subset of male caregivers, who participated in a longitudinal, grounded theory study. Semi-structured interviews were conducted Seven male spouses.	Analytical strategy not reported Data showed how dementia changed the relationship and changed the way male spouses approached and perceived the caregiver role, and how it influenced them as individuals over time.

Table 5. Quality assessment of included studies, Q1 – Q10 illustrates the ten questions included in CASP, Y (Yes) N (No).

Study	Q1	Q2	Q3	Q4	Q5	Q6	Q7	Q8	Q9	Q10
Hellström et al. (2007)	Y	Y	Y	N	Y	Y	Y	Y	Y	Y
Vikström et al. (2008)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Quinn et al. (2008)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Pretorius et al. (2009)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Fjellström et al. (2010))	Y	Y	Y	N	Y	N	N	Y	Y	Y
O'Shaughnessy et al. (2010)		Y	Y	Y	Y	N	Y	Y	Y	N
Boylstein and Hayes (2012)	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Lin et al. (2012)	Y	Y	Y	Y	Y	N	Y	Y	Y	N
Boyle (2013)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Ducharme et al. (2013)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Madsen and Birkelund (2013)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Massimo et al. (2013)	Y	Y	Y	Y	N	N	N	N	N	Y
Shim et al. (2013)	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Bergman et al. (2016)	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Hellström et al., 2017	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y

Y – Yes, N – No

Figure 1. PRISMA 2009 Flow Diagram, identification including inclusion and exclusion of studies.

Table 6. Thematic analysis.

Themes	Subthemes	Representative studies
Theme (1) Noticing changes to everyday life		(Ducharme et al., 2013; Quinn et al., 2008).
Theme (2) Transition to new marital relationship	Subtheme (1) Transition in marital relation in everyday life	(Bergman et al., 2016; Boylstein & Hayes, 2012; Ducharme et al., 2013; Fjellström et al., 2010; Hellström et al., 2017; Lin et al., 2012; Madsen & Birkelund, 2013; Massimo et al., 2013; O'Shaughnessy et al., 2010; Quinn et al., 2008; Vikström et al., 2008).
	Subtheme (2) Management of transformed marital relation	(Bergman et al., 2016; Boyle, 2013; Fjellström et al., 2010; Hellström et al., 2017; Hellström et al., 2007; Madsen & Birkelund, 2013; O'Shaughnessy et al., 2010; Pretorius et al., 2009; Quinn, Clare, & Woods, 2009; Shim et al., 2013; Vikström et al., 2008).
Theme (3) Planning the future		(Boylstein & Hayes, 2012; Ducharme et al., 2013; Massimo et al., 2013; O'Shaughnessy et al., 2010; Pretorius et al., 2009).

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