Table 2 Methodological characteristics of the included qualitative studies

  1997/ USA [71]

Beisecker et al.

104 informal CGs; 70.2% female61.5 spouse; mean age = 63.6 years

Semi-structured interview by telephone. Topics: physician-patient-CG interactions, informational needs and advance directives.

  1999/ USA [72]

Loukissa et al.

34 CGs; 74% female 42% spouse; 68% african-american CGs

5 focus groups. The open-ended interview began with: “If you were to write a book for persons in similar situations to yours, what would you want them to know?”.

  2001/ USA [73]

Smith et al.

45 informal CGs; 87% female51% spouse

Semi-structured intensive interview. Nine questions about needs, changes, experiences, skills and assistance.

  2003/ USA [74]

Farran et al.

177 informal CGs

Semi-structured interviews and open-ended group discussion (during group session). Topics: care recipient issues and concerns expressed by CGs; specific skills needed by CGs to address key care recipient issues.

  2004/ USA [75]

Farran et al.

177 informal CGs

Semi-structured interviews and open-ended group discussion (during group session). Topics: CG issues and concerns discussed by CGs; specific skills needed by CGs to address key CG issues and concerns.

  2013/ Canada [76]

Nichols et al.

14 young CGs (ten female, aged 11-18).

2 focus groups using a semi-structured interview guide. Topics: experiences and needs of young CG at various points in the patient’s diagnostic process and course of illness (to create a relevant support website).

 2010/ Netherlands [77]

Bakker et al.

1 informal CG; female; spouse; 46 years

A single case study design (qualitative interviews with the CG). Topics: experiences and needs during period prior to diagnosis, diagnosis, period after diagnosis, caring, transitions in care and future perspective.

 2014/ The Netherlands [78]

Millenaar et al.

14 children CGs; eight female; mean age = 21.0 years

Semi-structured interviews. Topics: the children’s reactions to the diagnosis, the help they received after the diagnosis, and the resulting changes in their lives. Topics focused on the children’s needs.

 2015/ Netherlands [79]

Boots et al.

28 informal CGs; 75% female; 78% spouse; mean age = 63.6 years

4 focus group interviews using context-mapping approach. Topics: needs and wishes to prevent overburdening, need for care and need for communication of care.

 2017/Canada [80]

Wawrziczny et al.

40 spouses of persons with EOD and 38 spouses of persons with late-onset dementia; 23 and 20 female; mean age = 57.4 and 77.0

Semi-structured interviews based on the French version of the Carers Outcome Agreement Tool. Four areas: the types of information and support provided, the changes that could improve the quality of life for the PWD and the spouse CG, the quality of the aid received, and the desire for future assistance.

 1986/ Sweden [81]

Brâne

56 informal CGs (28 with patient in early phase and 28 with patient in long stay wards)

Interviews and two group meeting.Topics: situation, need of help, feelings about the care on the long stay ward.

 2001/ USA [82]

Lampley-Dallas et al.

13 informal CGs (african-american CGs); 11 female; two spouse; mean age = 54 years

2 focus group. 3 questions about needs, the health care system (help and interaction) and stress.

 2003/ India [83]

Shaji et al.

17 informal CGs; 76% female

Semi-structured interviews. Topics: demographic data, level of knowledge about AD, the practical and psychological problems of CGs and their attitudes towards caring.

 2005/ UK [84]

Innes et al.

30 informal CGs (rural CGs); 22 female

16 semi-structured interviews and three focus group. Topics: services used, perceived benefits and drawbacks of each service, alternative sources support, views on the impact of geographical location and service use and support.

 2009/ Netherlands [85]

de Jong et al.

Nine informal CGs; five female; four spouse

Semi-structured interviews in their home or by telephone. Topics: needs and wishes of CGs using a skilled psychogeriatric day-care facility; functioning of the CGs and the PWD, health care, knowledge about dementia and CGs’ experience.

 2011/ Australia [86]

Shanley et al.

15 CGs; eight female; ten spouse; mean age = 64 years

Semi-structured interviews. Topics: history of caregiving experience; ‘quality of life’ and ‘quality of care’; particular challenges encountered; sources of advice and support; the needs of CGs; and the positive and negative aspects of formal service provision.

 2012/ USA [87]

Samia et al.

Survey: 168 informal CGs; 84.5% female; 45.2% spouse; mean age = 66,6 yearsFocus group: 26 family CGs; 84.6% female; 60% spouse

A multi-stage qualitative descriptive study: open-ended survey and five focus group. Topics: ongoing training needs and preferences of previously trained CGs.

 2013/ Australia [88]

Low and White et al.

31 CGs; 27 female; 21 spouse; mean age = 63 years

Face-to-face, telephone or group interviews. Topics: characteristics of an ideal dementia-specific community care service, the ideal outcomes or achievements of a dementia-specific community care service.

 2013/ Singapor [89]

Vaingankar et al.

63 informal CGs; 60% female20% spouse; mean age = 52.9 years

Ten focus group and 12 semi-structured interviews (funnel approach). Topics: experiences and discussion focused on each identified unmet needs or challenges.

 2014/ Germany [90]

Muders et al.

85 CGs

Questionnaire with two open-ended questions. Topics: exploration and documentation of the CG’s needs and identification of the healthcare professionals to adequately support them.

 2015/ USA [91]

Meyer et al.

Ten vietnamese informal CGs; seven female; two spouse; mean age = 55

Semi-structured interviews (n = 10 CGs). Topics: family structure and immigration, beliefs about dementia, experiences with caregiving, coping strategies, help-seeking and service utilization.1 Focus group (n = 5 CGs). Topics: helpful interventions or other treatments to reduce CG distress, sources of stress and coping/management strategies.

 2016/Thailand [92]

Griffiths et al.

30 CGs; 24 female; 12 spouse

Semi-structured interviews. Topics: problems and needs of CGs who help older people with dementia to do activities of daily living.

 2016/USA [93]

Peterson et al.

27 CGs; 19 female; eight spouse; mean age = 58.5

Semi-structured interviews. Topics: caregiving characteristics, care recipient symptoms, information regarding diagnosis, care issue and strategies (trigger, previous sources, most helpful sources, barriers, expectations and preferences), preferred learning methods and setting, and the use of technology.

 2016/USA [94]

Samson et al.

32 African American CGs; 28 female

4 focus group. Topics: examination of the concerns and experiences of the African American CGs (differences with other racial or ethnic groups) + identification of the information needs and preferences for information, education and support.

 2016/USA [95]

Jennings et al.

36 CGs; 26 female; 24 spouse; mean age = 63

4 Focus group with CGs. Topics: goals in dementia care relating to specific domains, including medical care, social functioning, safety, and end-of-life care.