Table 3 Presentation of studies included

Aminzadeh F, Dalziel WB, Molnar FJ & Garcia LJ [36], 2009

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 [37], 2010

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.

Beattie A, Gavin D-W, Gilliard J & Means R [90], 2004

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

Bronner K, Perneczky R, McCabe R, Kurz A & Harmann J [91], 2016

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 analysed using content analysis in accordance with Mayring.

Brorsson A, Øhman A, Lundberg S. & Nygård L [55] ,2011

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 analysed using open coding in accord with Corbin and Strauss.

Clare L, Rowland J, Bruce E, Surr C & Downs M [92], 2008

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 1-8. The total dataset consisted of 304 transcripts.

Interpretative phenomenological analysis as guiding design.

De Witt L, Ploeg J & Black M [48], 2010

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 analysed using three techniques data analysis in accord with van Manen.

De Witt L, Ploeg J & Black M [49], 2009

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 analysed using three techniques data analysis in accord with van Manen.

Digby, R., Moss, C. & Bloomer, M.J. [93], 2012

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 specific communication techniques.

Data were analysed using content analysis in accord with Hsieh and Shannon.

Digby R & Bloomer MJ [94], 2014

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 [54], 2008

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 analysed using NVivo and further in line with grounded theory.

Fleming R, Kelly F & Stillfried G [34], 2015

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 analysed using management software NVivo 8.

Frazer SM, Oyebode JR & Cleary A [47], 2012

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 analysed using interpretative phenomenological approach.

Gill L, White L & Cameron ID [44], 2011

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 analysed using thematic- and constant comparison analyses.

Gilmour JA & Huntington AD [95],2005

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 [96], 2013

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.

Harmer BJ & Orrell M [26], 2008

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.

Hedman R, Hansebo G, Ternestedt BM, Hellström I, Norberg A [42], 2013

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 home.

Sweden

Individual, semi-structured interviews were performed.

Data were analysed using phenomenological approach in accord with Harré’s theory of social constructionist.

Heggestad A, Nortvedt P, Slettebø A [66], 2013

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.

Hulko W [97], 2009

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 analysed in accord with grounded theory.

Johannessen A & Möller A [98], 2011

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,

Keller HH, Martin LS, Dupuis S, Genoe R, Edward HG, Cassolato C [63], 2010

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 analysed using grounded theory methodology in accord with Charmaz and team analysis.

Lawrence RM, Samsi K, Banerjee S, Morgan C, Murray J [99], 2011

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 analysed using grounded theory approach in accord with Glaser.

Liou CL & Jarrott SE [65], 2013

To explore the experience of people with dementia in two adult day service environments within the Taiwanese culture.

N=8 persons with dementia and staff (15)

Taiwan

Semi-structured interviews.Observation.

Data were analysed using a deductive-inductive approach in accord with Hung and Chaudhury.

Mazaheri M, Eriksson LE, NasraBadi AN, Sunvisson H, Heikkilä K [100], 2014

To explore the subjective experience of living with dementia among Iranian immigrants in Sweden

N=15 persons diagnosed with dementia living at home (10) or in group dwellings for people with dementia.

Sweden

Individual semi-structured interviews were performed.

Data were analysed using content analysis in accord with Graneheim and Lundman.

Mjorud M, Engedal K, Rosvik J, Kirkevold M [41], 2017

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 analysed using phenomenological-hermeneutical analysis in accordance with Lindseth and Norberg.

Mok E, Lai CK, Wong FL, Wan P [101], 2007

To describe the lived experience of people with early stage dementia and their ways of coping with the illness

N=15 persons with dementia living at home

China

Individual interviews were performed.

Data were analysed using phenomenological approach in accord with Colaizzi.

Molyneaux VJ, Butchard S, Simpson J, Murray Cl [102], 2012

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 analysed using constructivist grounded theory approach in accord with Charmaz.

Moyle W, Venturo L, Griffiths S, Grimbeek P, McAllister M, Oxlade D et al. [43], 2011

To understand the factors that influence quality of life for people living with dementia in long term care, including understanding of how they perceived they were valued

N=32 persons diagnosed with dementia living in long term care.

Australia

Individual, semi-structured Interviews were performed.

Data were analysed in accordance with Laximancer using computer assisted concept mapping program.

Mushi D, Rongai A, Paddick SM, Dotchin C, Mtuya C, Walker R [103], 2014

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 analysed using content analysis.

Nowell ZC, Thornton A, Simpson J [67], 2013

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 analysed using an interpretative phenomenological approach.

Nygård L [45], 2008

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 (during 3 weeks) were performed. Two to four sessions of interviews and observations pr. person, each session lasting between 1 to 2 hours.

Data were analysed using a phenomenological, hermeneutical approach.

Öhman A & Nygård L [104], 2005

To uncover and describe the meaning and motives for engagement in self-chosen daily life occupation for elderly individuals with Alzheimer’s disease 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.

Pesonen HM, Remes AM, Isola A [105], 2013

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 [50], 2006

To learn more about the experiences the person with dementia and their families have in regard to meaningful activity

N= 8 persons diagnosed with AD living in their home with one family member.

Canada

Repeated individual in-depth, conversational interviews with persons with dementia and one family member in line with van Manen were conducted.

Data were analysed using interpretative phenomenological approach in accord with Brenner.

Phinney A [51], 2011

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 homes

Canada

Repeated in-depth conversational interviews.

Participant observation.

Pipon-Young FE, Lee KM, Jones F, Guss R [106], 2012

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 analysed using action research; interpretative approach including thematic analysis techniques in line with Charmaz and concept mapping in accord with McNiff & Whitehead.

Rostad D, Hellzen O, Enmarker I [107], 2013

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.

Samsi K & Manthorpe J [108], 2013

To gain understanding of how everyday decision-making occur and change among people with dementia and carers from their perspective

N= 12 persons diagnosed with dementia living in their home and their family caregivers (12).

UK

Face to face interviews 3-4 times during one year (approximately every 3-4 month) using a person-centered interviewing style were performed.

Both joint and separate interviews was performed, according to the preferences of those interviewed (it may vary over time).

Phenomenological study in accord with Smith using thematic analysis in line with Braun and Clarke.

Svanström R & Sundler AJ [46], 2015

To elucidate the phenomenon of living alone with dementia and having a manifest care need

N= 6 persons with dementia living in own homes.

Sweden

Several conversational interviews and field notes. 32 visits with six participants.

Data were analysed in accord with an in-depth phenomenological analysis.

Tak SH, Kedia S, Tongumpun TM & Hong SE [39], 2015

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 analysed in accord with descriptive, content analysis within ethnographic framework.

Thein NW, D’ Souza G, Sheehan B [38], 2011

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 Zadelhoff E, Verbeek H, Widdershoven G, van Rossum E, Abma T [40], 2011

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.

Vikström S, Josephson S, Stigsdotter-Neely A, Nygård L [64], 2008

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.

Analysed using constant comparative method in line with grounded theory by Corbin & Strauss.

Wolverson EL, Clarke C, Moniz-Cook E [52], 2010

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 analysed using interpretative phenomenological approach in line with Smith.