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Table 3 Presentation of studies included

From: Balancing the struggle to live with dementia: a systematic meta-synthesis of coping

Authors & year Aim Participantsa Method
Aldridge H, Fisher P & Laidlaw K, 2017 [27] To expand on this limited understanding and gain a deeper insight as to how shame is experienced and made sense of by people with early-stage dementia by exploring this topic directly with the people themselves. N = 5 persons diagnosed with dementia. AD (3), Vascular (1), Mixed/vascular (2)
Diagnosis of dementia 2–6 months prior to interview.
Age: 74–90 years
Women: 33%
UK
Semi-structured interview in own home. Analysis of interviews was based upon the IPA procedure outlined by Smith) and Yardley.
Aminzadeh F, Dalziel WB, Molnar FJ & Garcia LJ, 2009 [28] To explore the subjective meaning of relocation for persons with dementia moving into residential care. N = 16 persons diagnosed with dementia living at home and planning to move to residential care within 2 months.
Canada
Individual in-depth interviews. Field notes as supplementary data. Analyses were guided by the work of Corbin & Strauss.
Aminzadeh F, Dalziel WB, Molnar FJ & Garcia L, 2010 [29] To examine the significance of home at the time of relocation to residential care from the perspective of persons with dementia. N = 16 persons diagnosed with dementia living at home and planning to move to residential care within 2 months.
Canada
Individual in-depth interviews. Field notes as supplementary data. Analyses were guided by the work of Corbin & Strauss.
Atta-Konadu E, Keller HH & Daly K, 2011 [30] To provide a broader perspective and insight into the food–related role shift experiences of husbands and their wives with dementia by presenting the accounts of both spouses in the couple N = 9 persons diagnosed with dementia living in their home and their spousal care partners.
Age range: 58–86 years
Women: 100%
Living with partner: 100%
Canada
Participants were interviewed yearly over a three-year period (the last year only 5 husbands and wives were still involved). First couples interviewed in dyads, and then individual interviews were accomplished 1 week to 1 month later.
Data were analyzed using the constant comparative method described by Corbin & Strauss.
Barrett C & Crameri P, 2015 [31] To outline the experiences and needs of lesbian, gay, bisexual and trans Australians living with dementia – and their partners N = 9 persons living with dementia, partners (21) and service providers.
Age range 47–79 years
Australia
In-depth interviews mostly face to face (20). Data were analyzed using qualitative data analysis for applied policy research in line with Ritchie and Spencer.
Beattie A, Gavin D-W, Gilliard J & Means R, 2004 [32] To demonstrate how interviews can be conducted with younger people with dementia. N = 14 participants who had received a diagnosis of dementia and were using services.
UK
Semi-structured, individual in-depth interviews
Data were transcribed and subjected to comparative textual analysis guided by the principles of Strauss & Corbin
Borley G & Hardy S, 2017 [33] To explore the lived experience of becoming cared for and the impact his has on identity and sense of self of women with Alzheimer’s disease. N = 8 women with mild-to-moderate AD, living in own home
Mean age: 78 years (range 74–83 years)
Mean MMSE: 20 (range 15–26) scored within the last 6 months
Living with partner: 100%
Requiring assistance with I-ADL: 100%
UK
Individual semi-structured interviews performed twice (within 4 weeks). The first interview enabled the women to talk about their life and experience related to their diagnosis of AD. The second interview allowed for further exploration and clarification with open-ended questions.
Data were examined with interpretative phenomenological analysis in line with Smith, Flowers & Larkin.
Bronner K, Perneczky R, McCabe R, Kurz A & Harmann J, 2016 [34] To identify medical and social topics which become relevant in the period following diagnosis of AD, for which a decision may eventually need to be made and which has implications for the life and wellbeing of the persons with AD N = 5 persons with AD, relatives (6) and professionals (13).
Germany
Semi-structured face-to-face interviews.
Data were analyzed using content analysis in accord with Mayring.
Brorsson A, Øhman A, Lundberg S. & Nygård L, 2011 [35] To illuminate experiences of accessibility in public space in people with AD, with particular focus on placed, situations and activities that they found to be important for daily life N = 7 persons diagnosed with early AD, living in ordinary housing
Sweden
Repeated in-depth interviews. All, except for one informant, were interviewed twice.
Data were analyzed using open coding in accord with Corbin and Strauss.
Chaplin R & Davidson I, 2016 [36] To focus specially on the experiences of people developing a dementia while still in employment in the UK N = 5 persons with AD still being employed.
MMSE: score range 25–28
Age range: 58–74 years
Women: 20%
UK
Individual semi-structured interviews on a single occasion.
Data were analyzed using interpretative phenomenological analysis.
Clare L, Rowland J, Bruce E, Surr C & Downs M, 2008 [37] To explore the subjective experience of living with dementia in residential care and to understand the psychological impact of being in this situation N = 81 persons diagnosed with dementia living in residential care homes.
UK
An existing dataset consisting of individual unstructured conversations with people with dementia from a study of well-being in residential care were used.
The number of conversations recorded with each participant ranged from 1 to 8. The total dataset consisted of 304 transcripts.
Interpretative phenomenological analysis as guiding design.
Clemerson G, Walsh S & Isaac C, 2014 [38] To explore the individuals’ subjective experiences of young-onset dementia N = 8 persons diagnosed with AD living at home.
MMSE: score range 17–21
Age range: 35–60 years
Women: 12.5%
Living with someone (partner or others): 75.0%
UK
Individual semi-structured interviews were performed.
Data were analyzed using interpretative phenomenological analysis.
Dalby P, Sperlinger DJ & Boddington S, 2012 [39] To understand the experience of spirituality in the context of living with dementia. In addition, a second aim was to understand the experience of dementia in the context of spiritual belief N = 6 persons diagnosed with dementia living at home (75%), in assisted living (12.5%) or in nursing home (12.5%).
Age range: from 70-ties to 90-ties
Women: 83.3%
Living with partner: 16.7%
UK
Individual semi-structured interviews with participants were performed.
Data were analyzed using interpretative phenomenological analysis.
Derksen E, Vernooij-Dassen M, Gillissen F & Scheltens P, 2006 [40] To describe and appraise the experiences, beliefs, and fears regarding the diagnosis of dementia in both patients and carers N = 18 persons diagnosed with dementia and their family carers.
Mean MMSE score: 22 (range 15–30)
Mean age: 71 years
Women: 20%
Living with partner 85%.
The Netherlands
Individual semi-structured interview with patient and the carer were performed separately. Two interviews with participants; the first 2 weeks after the diagnostic disclosure and 10 weeks later.
Data were analyzed using the constant comparative method in line with Corbin & Strauss.
De Witt L, Ploeg J & Black M, 2009 [41] To understand the meaning of living alone for older people with dementia. N = 8 women diagnosed with mild to moderate AD or related dementia living alone in the community
Canada
Repeated face-to-face, open-ended interviews. All, except for two informants, were interviewed twice.
Data were analyzed using three techniques data analysis in accord with van Manen.
De Witt L, Ploeg J & Black M, 2010 [42] To understand the meaning of living alone from the perspective of older people with Alzheimer disease or a related dementia. N = 8 women diagnosed with mild to moderate AD or related dementia living alone in the community.
Canada
Repeated face-to-face, open-ended interviews. All, except for two informants, were interviewed twice.
Data were analyzed using three techniques data analysis in accord with van Manen.
Digby R, Moss C & Bloomer MJ, 2011 [43] To understand how older patients with mild to moderate dementia experienced the transfer from acute to subacute care and settling-in period. N = 8 persons with dementia staying in a sub-acute facility
Australia
In-depth semi-structured interviews using the communication techniques recommended by Young and Manthorp .
Data were analyzed using content analysis in accord with Hsieh and Shannon.
Digby R & Bloomer MJ, 2012 [44] To elicit the perspectives of current inpatients with dementia, and their family carers, about the environment/design features that they believe are necessary for people with dementia, and their family carers. N = 7 persons with dementia staying in a sub-acute facility and carers (4)
Australia
In-depth semi-structured interviews
Duggan S, Blackman T, Martyr A & Van Schaik P, 2008 [45] To explore the use of outdoor environment and how dementia impacts on it. N = 22 persons diagnosed with early to moderate AD or vascular dementia living in their own home, and carers (11 spouses/partners, 2 daughters, 1 carer/housekeeper)
UK
Semi-structured individual interviews.
Data were analyzed using NVivo and further in line with grounded theory.
Fleming R, Kelly F & Stillfried G, 2015 [46] To identify the environmental features that are desirable in buildings used to provide care for people with dementia nearing the end of their lives N = 2 persons with young onset dementia, family carers (10) and health care personnel (5).
Australia
Mixed method. Three focus group interviews.
In addition, a survey with experts in environmental design of care facilities for older people (21).
Interview data were analyzed using management software NVivo 8.
Frazer SM, Oyebode JR & Cleary A, 2011 [47] To explore how women who live alone with dementia see themselves and how they cope in their everyday lives N = 8 persons diagnosed with dementia (AD = 5) living in their own home.
UK
Individual, semi-structured interviews were performed.
Data were analyzed using interpretative phenomenological approach.
Genoe MR, Dupuis SL, Keller HH, Martin LS, Cassolato C & Edward HG, 2010 [48] To explore the experience and meaning of food and mealtimes for persons with dementia living in the community and their primary partners in care N = 27 persons diagnosed with dementia (AD = 25) living in their own home together with their primary family caregivers (19 spousal relationships, 8 adult-child relationships).
Majority were in early stage of dementia
Age range: 56–88 years
Women: 59.3%
Living with someone: 100%
Canada
Dyad interviews were followed by individual interviews within 2 weeks were conducted.
Data were analyzed using grounded theory approach as described by Charmaz - the constant comparative method.
Genoe MR, Keller HH, Martin LS, Dupuis SL, Reimer H, Cassolato C & Edward G, 2012 [49] To explore the meaning and experience of change surrounding mealtimes for persons with dementia living in the community and their primary partners in care N = 27 persons diagnosed with dementia (AD = 25) living in their own home together with their primary family caregivers (19 spousal relationships, 8 adult-child relationships).
Majority were in early stage of dementia
Age range: 56–88 years
Women: 59.3%
Canada
Dyad interviews were followed by individual interviews within 2 weeks were conducted.
Data were analyzed using grounded theory approach as described by Charmaz - the constant comparative method.
Genoe MR & Dupuis SL, 2014 [50] To explore how persons with dementia think about and describe leisure in the context of their lives N = 4 persons with early stage dementia living in their own home.
Age range: 70–82 years
Women: 50%
Living with partner: 50% (both men)
Canada
Individual interviews with each participant were accomplished. Data were also collected through participant observation and photo voice.
Data were analyzed using van Manen’s phenomenological reflection.
Gill L, White L & Cameron ID, 2011 [51] To understand how people with dementia receiving community care services in their own homes, perceive interaction in the context of their service experience N = 22 persons diagnosed with dementia receiving community care services in their own home.
Australia
Individual semi-structured interviews were performed.
Data were analyzed using thematic- and constant comparison analyses.
Gilmour JA & Huntington A, 2005 [52] To explore the experiences of living with memory loss N = 9 persons diagnosed with dementia living at home.
New Zealand
Individual, semi-structured interviews using open questions were used. To assist participants, questions were provided on beforehand and many participants wrote reminder notes prior to the interview.
Thematic analyses were undertaken.
Goodman C, Amador S, Elmore N, Machen I & Mathie E, 2013 [53] To explore how people with dementia discuss their priorities and preferences for end-of-life care, and how this might inform subsequent discussions with family and practitioners N = 18 persons diagnosed with dementia living in residential care homes.
UK
Individual, semi-structured interviews in the form of a ‘guided-conversation’ were conducted as a part of a longitudinal mixed method study.
Thematic analyses were undertaken.
Hain D, Touhy TA, Compton Sparks D & Engstrom G, 2014 [54] To explore the experience of living with dementia from multiple perspectives, namely, the individual, spouse, and dyad of the person and spouse N = 6 persons diagnosed with AD and their spousal caregiver (6).
Mean MMSE: 23.3 (20–25)
Mean age: 79.3 (71–85) years
Women: 16.7%
Living with partner: 100%
USA
Individual, semi-structured interviews conducted from multiple perspectives; the individual, spouse, and dyad of the person and spouse.
Analyses were performed using the Giorgi’s descriptive phenomenological approach.
Harman G & Clare L, 2006 [55] To explore the experience of living with dementia with focus on what makes activities meaningful for people with dementia N = 17 persons diagnosed with dementia living in residential care homes, in addition their family caregivers (8), and staff (15).
UK
Focus group design with a constructed question guide with residents, staff and relatives of the residents were performed. Mind map notes.
Data were analysed using grounded theory approach with contents analysis.
Harris PB, 2011 [56] To study factors of importance for maintaining and retention of friendship in early stage dementia N = 8 persons diagnosed with dementia (AD = 7) living in their home.
Early stage of dementia
Mean age: 75 (59–85) years
Women: 100%
USA
Individual in-depth interviews were performed.
Data were analysed using grounded theory approach in accord with Glaser and Strauss
Hedman R, Hansebo G, Ternestedt BM, Hellström I & Norberg A, 2013 [57] To explore the use of Harré’s social constructionist theory of selfhood to describe how people with mild and moderate AD express their sense of self. N = 12 persons diagnosed with AD living in their own home.
Sweden
Individual, semi-structured interviews were performed.
Data were analysed using phenomenological approach in accord with Harré’s theory of social constructionist.
Hedman R, Hansebo G, Ternestedt BM, Hellström I & Norberg A, 2016 [58] To describe how five people with mild and moderate AD express their personal attributes and life histories N = 5 persons diagnosed with mild to moderate AD.
Age range: 59–78 years
Women: 60%
Living with partners: 80%
Sweden
10 support group sessions during an 8 months period.
Data were analyzed using an abductive approach in accord with McAdams and Graneheim and Lundman.
Heggestad A, Nortvedt P & Slettebø A, 2013 [59] To investigate how life in Norwegian nursing homes may affect experiences of dignity among persons with dementia N = 5 persons diagnosed with dementia living in nursing home.
Norway
Individual interviews and observations field notes were used.
Data were analysed using qualitative phenomenological and interpretative hermeneutical approach in accord with Kvale & Brinkman.
Hellström I, Eriksson H & Sandberg J, 2015 [60] To describe how older women with dementia express the importance of their homes and chores in everyday life N = 7 women diagnosed with dementia.
Age: 65–84 years
Living with spouse: 100%
Sweden
Supplementary secondary analysis of a longitudinal study exploring ways in which people with dementia and their spouses (20 couples) experienced dementia over time.
Several individual interviews (3–5) were performed.
Data were analyzed in accord with the method of qualitative description according to Sandelowski.
Herron RV & Rosenberg MW, 2017 [61] To examine how people with dementia relate to and within their communities as well as their perceptions of community support service. N = 46 community-dwelling people with dementia and their partners; spouse (39), daughter (2), sister (1), son (1).
Diagnosis of dementia: 3 years (average)
Age: 56–93 years
Women: 43%
Canada
Qualitative case-study approach. Semi-structured interviews. All but two participants had a partner in care present with them.
NVivo-coding according to Charmaz
Hillmann A, Jones IR, Quinn C, Nelis SM & Clare L, 2018 [62] (1) To identify the kinds of representations of dementia present in the accounts of those who speak for people with dementia.
(2) To situate these stories within their wider social and cultural contexts, to ascertain the extent to which they reflect, contribute to or challenge existing representations of dementia.
(3) To utilise Burchardt’s work (2016) to consider what the implications might be of their circulation and accumulation in a narrative economy of dementia.
N = 5 people living with dementia and their partners (4)
AD (2), Vascular dementia (2), mixed (1).
Age: 49–83 years
Women: 40%
UK
The participants were interviewed twice, a few months apart.
Analyzed with constant comparative method in line with Glaser & Strauss and Silverman
Hulko W, 2009 [63] To explore the experience of older people with dementia and in which way socio-culture plays a role in diverse dementia patients’ daily living N = 8 persons diagnosed with dementia (AD = 7) living in their home and their relatives (50).
Canada
Series of individual in-home interviews over 1–2 month and observation sessions were used.
Data were analyzed in accord with grounded theory.
Johannessen A & Möller A, 2011 [64] To find out how people experience living with early-onset dementia, and to assess the implications for practice and the development of further services N = 20 young persons with a diagnosis of dementia.
Norway
Individual, thematic interviews were conducted.
Data were analysed in line with grounded theory according to Glaser and Strauss,
Johannessen A, Möller A, Haugen PK & Biong S, 2014 [65] To investigate and interpret metaphorical expressions of the lived experiences of everyday life in people with young-onset dementia N = 20 young persons with a diagnosis of dementia.
Age: 54–67 years
Women: 40%
Living with spouse: 75%
Norway
Individual, thematic interviews were conducted.
Secondary analysis of the data in line with cognitive-semantic theory according to Lakoff & Johnson.
Karlsson E, Sävenstedt S, Axelsson K & Zingmark K, 2014 [66] To explore how people with AD present their life story N = 9 participants diagnosed with AD, living in their homes.
MMSE: 19–25
Age: 60–81 years
Women: 55.5%
Living with spouse: 88.9% (8)
Sweden
Individual, narrative interviews were conducted.
Data were analyzed with the method for analysis of narrative in accord with Polkinghorne.
Keller HH, Martin LS, Dupuis S, Genoe R, Edward HG & Cassolato C, 2010 [67] To explore the mealtimes to provide opportunity for social activity and emotional connection N = 27 participants with early to mild stage of dementia living in their home and their next of kin (28).
Canada
Active interviews with both individual and dyads were performed.
Data were analyzed using grounded theory methodology in accord with Charmaz and team analysis.
Langdon SA, Eagle A & Warner J, 2007 [68] To explore the social effects of diagnosis of dementia N = 12 persons diagnosed with dementia living in their own home.
MMSE range: 19–30
Mean age: 79 (range: 66–87) years
Women: 50%
UK
Individual semi-structured in-depth interviews were performed.
Data were analyzed in accord with interpretative phenomenological approach.
Lawrence RM, Samsi K, Banerjee S, Morgan C & Murray J, 2011 [69] The subjective reality of living with dementia from the perspective of three minority ethnic groups.
Thoughts and other reactions to the diagnosis dementia
N = 30 persons diagnosed with dementia living at home or in sheltered accommodations (4).
UK
Individual in-depth interviews were performed.
Data were analyzed using grounded theory approach in accord with Glaser.
Lee SM, Roen K &Thornton A, 2014 [70] To explore personal experiences of receiving a diagnosis and to investigate aspects of the experience of adjusting and adapting to dementia N = 10 persons diagnosed with mild AD, living at home.
Mean MMSE: 25 (22–30)
Mean age: 69 (57–84) years
Women: 70%
Living with partner: 50%
UK
Individual, semi-structured interviews were performed.
Data were analyzed using interpretative phenomenological approach.
Mac Kinlay E, 2009 [71] To examine spirituality and meaning in the experience of dementia of older Latvians who had immigrated to Australia during the war II N = 3 persons diagnosed with dementia living in an aged-care facility.
MMSE: 18–20
Age: 87–94 years
Australia
Individual in-depth interviews were performed.
Data were analyzed using grounded theory in accord with Strauss and Corbin.
MacRae H, 2011 [72] To examine how others’ reactions to and treatment of persons living with early stage AD influence their experience of dementia N = 9 persons diagnosed with early stage AD. living at home (7), in senior’s residence (1) or in a convent (1).
Mean age: 74 years
Women: 22.2%
Living with partner: 44.4%
Canada
Individual in-depth, interviews using a symbolic interactionist perspective were performed.
Data were analysed using inductive emergent process in accord with Coffey & Atkinson, Lofland & Lofland, and Taylor & Bogdan.
Mazaheri M, Eriksson LE, Heikkilä K, NasraBadi AN, Ekman SL & Sunvisson H, 2013 [73] To describe experience of living with dementia in Iran N = 15 persons diagnosed with moderate AD, or Vascular dementia, living at home.
Mean MMSE: 16.5 (range: 14–19)
Mean age: 72 (range 60–87) years
Women: 40%
Living with someone: 80%
Iran
Individual semi-structured interviews were performed.
Data were analysed using content analysis in accord with Graneheim and Lundman.
Merrick K, Camic PM & O’Shaughnessy M, 2016 [74] To enrich understanding of the experience of dementia from a relational perspective N = 7 persons with dementia and their care partners (7).
AD (4), frontotemporal dementia (1), vascular dementia (1) mixed (1).
Age range: 65–87 years
Women: 29%
UK
Semi-structured dyad interviews.
Data were analyzed using an interpretative phenomenological approach.
Mjørud M, Engedal K, Røsvik J & Kirkevold M, 2017 [75] To investigate the personal experience of living in a nursing home over time and what makes life better or worse from the perspective of the person with dementia N = 12 persons with dementia living in nursing home care units for persons with dementia
Norway
Repeated individual, unstructured interviews 3 months apart. Field observations.
Data were analyzed using phenomenological-hermeneutical analysis in accordance with Lindseth and Norberg.
Molyneaux VJ, Butchard S, Simpson J & Murray Cl, 2011 [76] To understand ‘couple-hood’ as it is co-constructed by the couple when one partner has dementia. N = 5 persons diagnosed with AD. and their partner living at home.
UK
The couples were interviewed simultaneously.
Data were analyzed using constructivist grounded theory approach in accord with Charmaz.
Mushi D, Rongai A, Paddick SM, Dotchin C, Mtuya C & Walker R, 2014 [77] To explore the socio-cultural beliefs surrounding dementia and the life experience of people with dementia and their caregivers in the Tanzania N = 41 persons diagnosed with dementia living at home and their caregivers, but only 25 persons with dementia were interviewed.
Tanzania
Semi structured paired interviews (25) and individual interviews (16) with the caregiver alone were performed.
Data were analyzed using content analysis.
Nowell ZC, Thornton A & Simpson J, 2013 [78] To understand personhood by exploring the subjective experiences of those with dementia in UK N = 7 people diagnosed with dementia living in dementia care units.
UK
Individual semi-structured individual interviews were performed.
Data were analyzed using an interpretative phenomenological approach.
Nygård L, 2008 [79] To explore how people with dementia who live alone experienced the meaning of their everyday technology, such as telephone and electronic equipment, and the use of it. N = 8 persons diagnosed with dementia living at home.
Sweden
Repeated individual interviews and observations (for 3 weeks) were performed. Two to four sessions of interviews and observations pr. person, each session lasting between 1 to 2 h.
Data were analyzed using a phenomenological, hermeneutical approach.
Pesonen HM, Remes AM & Isola A, 2013 [80] To explore the shared experience of dementia from the viewpoint of people with newly diagnosed dementia and their family members, and to understand how they manage their lives after the diagnosis N = 8 persons diagnosed with dementia (AD =6) living in their home or nursing home/assisted living facility (4) and their family members (8).
Finland
Conversational, low structured face-to-face interviews. Unstructured observations were conducted during the interviews; field notes were written after each interview.
Descriptive analysis using grounded-theory framework and constant comparative analysis in accord with Corbin & Strauss.
Phinney A, 2011 [81] To understand how people with dementia understand their lives as making sense and worth living. N = 9 persons with mild to moderate AD, living in own home.
Canada
Repeated in-depth conversational interviews. Participant observation.
Pipon-Young FE, Lee KM, Jones F & Guss R, 2012 [82] To explore the experiences of younger persons with dementia and develop an understanding of helpful support
To identify areas of the service in need for change
N = 8 persons diagnosed with dementia living in their home.
UK
Action research across three phases; semi-structured individual interviews and field notes were used.
Data were analyzed using action research; interpretative approach including thematic analysis techniques in line with Charmaz and concept mapping in accord with McNiff & Whitehead.
Read ST, Toye C & Wynaden D, 2017 [83] To explore the person with dementia’s expectations of their support needs and how they wish to live their lives N = 24 persons diagnosed with dementia, living in own home.
AD (8), Vascular dementia (3), Frontal Lobe dementias (3), Semanticdementia (1) and Posterior cortical atrophy (1). Eight partici-pants did not know the type of dementia)
Women: 50%
Living with someone: 70%
Australia
Individual semi-structured interviews. Field notes and memos were also collected to add contextual meaning to data collected from participants. Questions focused on participants’ experiences of the onset of their dementia, the impact of the diagnosis on themselves and their family, plus their future expectations of living with dementia.
This research used an application of the Grounded Theory (GT) method developed by Glaser and Strauss (2012).
Roach P, Drummond N & Keady J, 2016 [84] To develop deeper understanding of the family experience of transition in early-onset dementia and to develop a representative model of this experience N = 9 persons with early onset dementia and their family members (11)
AD (7), mixed (1), posterior cortical atrophy (1)
Age range: 58–68 years
Women: 0
Canada
Individual, initial and follow-up semi-structured interviews.
Data were analyzed in accord with a framework approach to qualitative data analysis by Ritchie and Spencer.
Rostad D, Hellzen O & Enmarker I, 2013 [85] To gain understanding of the lived experience of younger persons with dementia (< 65 years) who lived at home and suffered with early onset, and the meaning that could be found in their experiences. N = 4 persons diagnosed with dementia living in their home.
Norway
Individual, narrative individual interviews in a conversational style with broad open-ended questions were used.
Phenomenological hermeneutic approach to the analysis in line with Lindseth and Nordberg.
Sandberg L, Rosenberg L, Sandman P-O & Borell L, 2017 [86] To explore and better understand how people with dementia, living at home,
experience risks in their daily life and how they handle these situations.
N = 12 persons with mild-to-moderate dementia, living in wn home
AD (9), Vascular dementia (2), Levy Body (1)
Mean age: 77 years (range 67–87)
Women 50%
Living with someone: 66.6%
Sweden
Semi-structured individual interviews with open-ended questions
The interviews were analysed in steps using a qualitative content analysis approach in line with Granheim & Lundman.
Sharp BK, 2017 [19] To describes how people with dementia perceive their experiences of stress, and how people with dementia cope with the stress they experience? N = 21 persons with dementia living in own home
AD (13), Vascular dementia (7),Mixed (1)
Mean age: 65.9
Women: 52.3%
Living with someone:66.7%
UK
Focus groups.
The study is an interpretative phenomenological analysis (IPA) in accordance with Smith, Flowers, & Larkin.
NVivo Qualitative Data Analysis program was used.
Sixsmith A & Gibson G, 2007 [87] To study: the role and importance of music in the lives and activities of the participants, the benefits they derived from music and music-related activities N = 26 persons diagnosed with dementia living in their home (16) or staying in care homes (10) and their family caregivers.
Age: 62–96 years
Women: 69.2%
Living with someone: 70%
UK
Individual interviews in their natural setting, at home (16–18) and in the care homes (8–10) were performed. Open ended interviews, which were loosely structured.
Observational data from private home settings were gathered.
Stephan A, Bieber A, Hopper L, Joyce R, Irving K. Zanetti O, Portolani E, Kerpershoek L, Verhey F, de Vugt M, Wolfs C, Eriksen S, Røsvik S, Marques MJ, Gonçalves-Pereira M, Sjölund BM, Jelley H, Woods B & Meyer G, 2018 [88] Explore the perspectives of people with dementia, their informal carers and health and social care professionals of accessing and using formal care and services. Aiming to improve the understanding of the facilitators and barriers to the access to and the use of formal dementia care for the further development of appropriate services and interventions. N = 51 persons with dementia, 96 informal carers and 114 professionals
All types of dementia included.
Mean age: 76 (range 54–96)
Living in own home: 92.2%
Women: 54.9%
Living with someone:60.8%
Germany, Italy, Portugal, Sweden, Norway, UK, Ireland, the Netherlands
Focus groups.
Qualitative content analysis using open coding was performed in each county, according to Elo & Kyngas H and Graneheim & Lundman. To ensure consistency and methodological rigor, a manual was provided to all the partners. The analysis was supported by the software MAXQD Aplus version 11 (VERBI GmbH, Berlin, Germany).
Svanström R & Sundler AJ, 2015 [89] To elucidate the phenomenon of living alone with dementia and having a manifest care need N = 6 persons with dementia lining in own homes.
Sweden
Several conversational interviews and field notes. 32 visits with six participants.
Data were analyzed in accord with an in-depth phenomenological analysis.
Tak SH, Kedia S, Tongumpun TM & Hong SE, 2015 [90] To describe types of current activity involvement and barriers to activities reported by nursing home residents with dementia N = 37 nursing home residents with dementia.
USA
Individual short, open-ended interviews (31) and individual in-depth interviews (6) were performed.
Data were analyzed in accord with descriptive, content analysis within ethnographic framework.
Tolhurst E & Weicht B, 2017 [91] Explore how men with dementia seek to preserve their own personhood in response to the impacts of the condition. Explore how men with dementia seek to preserve their own personhood in response to the impacts of the condition. The authors claim that there is a lack of a masculine-gendered portrayal of the experience of dementia. N = 14 men with dementia and their spouse, living at home
Mild to moderate AD (12), Mild Levy Body (1), Moderate Vascular dementia (1)
Mean age: 73.5 (range 58–89)
UK
Two semi-structured dyad interviews of all 14 couples, with 6 months between each interview.
Narrative analysis according to Riessman, 2008
Thein NW, D’ Souza G & Sheehan B, 2011 [92] To explore the subjective experience of people with dementia of the move to a care home. N = 18 persons with mild to moderate dementia moving in to nursing home
UK
Repeated semi-structured individual interviews before and after moving to nursing home.
Systematically coding with NVivo using the headings for the interview as major codes.
van Vliet D, Persoon A, Bielderman A, Bakker C, Koopmans RTCM & Gerritsen DL, 2017 [20] Explore how people with YOD shape their daily lives to retain a sense of usefulness. N = 18 persons with dementia living in own home, and 21 informal care givers
AD (8), Fronto temporal (3) Vascular dementia (1), Mixed (1) Not specified (n = 5)
Mean age: 63.5 (range 57–70)
Women: 38.9%
Living with someone: 75%
The Netherlands
Focus groups, using a discussion guide with open-ended questions.
Qualitative content analysis in line with Graneheim & Lundman and Elo & Kyngas.
The analysis was supported by the softwear Atlas.ti.
Van Zadelhoff E, Verbeek H, Widdershoven G, van Rossum E & Abma T, 2011 [93] To investigate experiences of residents with dementia, their family and nursing staff in group living homes for older people with dementia and their perception of the care process N = 5 persons diagnosed with dementia living in a non-profit nursing home, in addition, residents’ family members (4) and staff (5).
The Netherlands
Individual in-depth interviews with open-ended questions were performed separately with each of the participants. Observations and field notes were taken.
Inductive and theoretical analysis was used.
Vernooij-Dassen M, Derksen E, Scheltens P & Moniz-Cook E, 2006 [94] To prospectively describe and understand the impact of receiving a diagnosis for individuals and their family carers over time, in order to suggest best practice for services and practitioners N = 18 persons with dementia living in their own home and their family carers.
Mean MMSE: 22 (range 15–30)
Mean age 71 years
Women: 22.2%
Living with someone: 83.3%
The Netherlands
Individual semi structured interviews about 2 weeks and 12 weeks after diagnosis were performed of PWD and family caregivers.
Constant comparative analysis using grounded theory in accord with Corbin & Strauss.
Vikström S, Josephson S, Stigsdotter-Neely A & Nygård L, 2008 [95] To identify and describe how persons with dementia and their caregiving spouses perceive their own, their spouses’ and their mutual engagements in everyday activities. N = 26 persons with dementia living in their home and their caregiving spouses (26).
Sweden
Individual semi-structured individual interviews with open-ended questions were performed for PWD and caring spouse.
Analyzed using constant comparative method in line with grounded theory by Corbin & Strauss.
Weaks D, Wilkinson H & McLeod J, 2015 [96] To explore the ways in which people with dementia, and those close to them, negotiated the task of disclosure of the diagnosis N = 5 persons with early AD living in their home, and persons close to them (18).
Age: 68–79 years
Women: 60%
Living with partner: 80%
UK
Sequential interviews combined with participant observation over a 6 months period.
Data were analyzed with Grounded Theory approach in accord with Corbin and Strauss. NVivo Qualitative Data Analysis program was used.
Wolverson EL, Clarke C & Moniz-Cook E, 2010 [97] To investigate the subjective experience of hope of people with dementia N = 10 persons diagnosed with AD living in their home.
UK
Individual semi-structured interviews with open-ended questions were performed.
Data were analyzed using interpretative phenomenological approach in line with Smith.
Öhman A & Nygård L, 2005 [98] To uncover and describe the meaning and motives for engagement in self-chosen daily life occupation for elderly individuals with AD dwelling in community. N = 6 community-dwelling persons diagnosed with AD.
Sweden
Repeated individual interviews and observations. Totally two or three times per person.
A qualitative comparative analysis method was used in accord with Bogdan & Biklen.
  1. aSociodemographic information is described for those studies presenting such information