Table 2 Study aims and participant demographics

Albinsson & Strang (2003) [30] Sweden

To explore issues of freedom, responsibility, existential isolation, death & meaning.

59 (42–81)

NR

Daughter = 9 (45%)

Son = 3 (15%)

Husband = 3 (15%)

Wife = 1 (5%)

Brother = 1 (5%)

Niece = 1 (5%)

Brother in-law = 1 (5%)

Daughter in-law = 1 (5%)

NR

2 (10%)

80 years (61–95)

7 (35%)

Cahill (2000) [31] Australia

To develop an understanding of the caring experiences of men looking after spouses diagnosed with dementia.

74 (55–87)

Australian = 26 (100%)

Husband = 26 (100%)

4 years (6–13)

26 (100%)

NR0 (0%)

Chang et al. (2011) [32] USA

To describe factors influencing decisional conflict among Chinese family carers regarding nursing home placement of older adults with dementia.

43.9 (25–83)

Chinese = 30 (100%)

Son = 8 (27%)

Daughter in-law = 7 (23%)

Daughter = 6 (20%)

Spouse = 5 (17%)

Grandchild = 2 (7%)

Nephew = 1 (3%)

Niece = 1 (3%)

3.2 years (1–8)

19 (63%)

NR NR

Eriksson et al. (2013) [33] Sweden

To explore the gender aspects of long-term caring from the perspectives of women providing home care for spouses with dementia.

NR (66–80)

White Swedish = 12 (100%)

Wife = 12 (100%)

NR

12 (100%)

NR

12 (100%)

Gurayah (2015) [34] South Africa

To explore the experiences of those caring for a person with dementia living in rural South Africa.

NR (46–68)

Black African = 5 (100%)

Daughter = 3 (60%)

Wife = 1 (20%)

Son = 1 (20%)

NR

5 (100%)

NR

NR

Harris (1998) [35] USA

To explore the experiences of sons caring for parents.

50 (32–71)

White = 25 (83%)

African American = 5 (17%)

Son = 30 (100%)

3.5 years (0.5–11)

17 (57%)

77 years (63–96)

20 (67%)

Harris & Long (1999) [36] USA

To compare Japanese & American men’s experiences of caring & to explore the impact of culture on their role.

NR (32–85)

American = 30

(67%)

Japanese = 15 (33%)

Husband (American) = 15 (33%)

Son (American) = 15 (33%)

Husband (Japanese) = 10 (23%)

Son (Japanese) = 5 (11%)

4.5 years (3.5–5)

24 (53%)

American parents: 77 years (NR)

Japanese parents: 87 years (71–95)

NR

NR

Ho et al. (2003) [37] Canada

To explore Chinese-Canadian carers’ feelings about their experiences of caring for relatives with Alzheimer’s disease.

54 (30–80)

Chinese-Canadian = 12 (100%)

Daughter = 8 (66%)

Wife = 2 (17%)

Daughter-in-law = 2 (17%)

3 years

(< 1–7)

7 (58%)

NR

NR

Kim (2009) [38] USA

To retrospectively explore the experiences of American-Korean carers of people with dementia & to examine the caring context.

67 (48–84)

Korean-American = 8 (100%)

Daughter/daughter in-law = 4 (50%)

Wife = 3 (37%)

Husband = 1 (13%)

6 years

(2–10)

8 (100%)

81 years (70–95)

NR

Lin et al. (2011) [39] UK

To identify, describe & explore changes in carers’ experiences of caring for a relative with dementia & the effects of caring on carer autonomy & health over time.

69 (64–72)

NR

Wife = 3 (50%)

Husband = 3 (50%)

NR (6–10) years

6 (100%)

69 years (64–77)

3 (50%)

McDonnell & Ryan (2014) [40] Ireland

To explore the experiences of sons caring for parents with dementia.

48 (32–60)

Caucasian = 13 (100%)

Son = 13 (100%)

NR (2–5) years

13 (100%)

NR (79–95)

1 (8%)

Meyer et al. (2015) [41] USA

To describe the beliefs & experiences of Vietnamese carers of family members with dementia.

55 (37–86)

Vietnamese = 10 (100%)

Spouse = 2 (20%)

Adult child = 8 (80%)

NR

All co-habiting (100%)

79 years (69–91)

4 (40%)

Morgan & Laing (1991) [42] Canada

To explore the impact of an Alzheimer’s diagnosis on the spouse 6 months after diagnosis.

NR

NR

Wife = 6 (67%)

Husband = 3 (33%)

NR

9 (100%)

NR

6 (67%)

Murray et al. (1999) [43] Europe – multiple countries

To explore the aspects of dementia which spouse carers find most difficult, rewards of caring & national & gender differences.

71 (55–79)

NR

Wife = 162 (58%)

Husband = 118 (42%)

NR

280 (100%)

73 years (61–81)

162 (58%)

Pang & Lee (2017) [44] Hong Kong SAR, China

To explore the caring experience of spousal carers of people with young onset dementia in Hong Kong.

67 (61–73)

Chinese = 6 (100%)

Wife = 3 (50%)

Husband = 3 (50%)

3.5 years (1–6)

6 (100%)

58 years (52–63)

3 (50%)

Peacock et al. (2010) [45] Canada

To describe the positive aspects of caring identified by carers of people with dementia.

NR

NR

Spouse = 22 (56%)

Adult child = 13 (33%)

Other = 4 (11%)

NR

NR

NR

25 (68%)

Qadir et al. (2013) [46] Pakistan

To explore dementia awareness among carers, their attitudes toward family members with dementia & experiences of burden.

34 (19–47)

Pakistani = 12 (100%)

Daughter = 5 (42%)

Son = 3 (25%)

Daughter in-law = 2 (17%)

Grandson = 1 (8%)

Nephew = 1 (8%)

NR

NR

73 years (55–90)

8 (66%)

Quinn et al. (2015) [47] UK

To explore how meaning, motivation & relationship dynamics combine to influence experiences of dementia caring.

65 (41–86)

White British = 12 (100%)

Spouse = 8 (67%)

Daughter = 4 (33%)

NR

12 (100%)

76 years (41–88)

NR

Russell (2001) [48] USA

To explore what male carers do, the meanings they ascribe to their work & their strengths & vulnerabilities.

NR (68–90)

White American = 11 (79%)

White European = 2 (14%)

African American = 1 (7%)

Husband = 14 (100%)

NR

NR

NR

0 (0%)

Santos et al. (2013) [49] Brazil

To explore differences in disease awareness in Latin American carers of people with dementia.

61 (NR)

Brazilian (100%)

Daughter = 10 (56%)

Spouse = 6 (33%)

Distant relative = 2 (11%)

NR

18 (100%)

78 years (NR)

7 (39%)

Siriopoulos et al. (1999) [50] Canada

To investigate the experiences & needs of husbands caring for wives with Alzheimer’s disease.

NR (64–92)

White (100%)

Husband = 8 (100%)

NR (< 1–10) years

6 (75%)

NR (68–90)

0 (100%)

Sterritt & Pokorny (1998) [51] USA

To explore the meaning of caring & describe African-American carers’ experiences of caring for family members with Alzheimer’s disease to see how cultural attitudes, beliefs & values affect experiences.

54 (31–80)

African-American (100%)

Daughter = 5 (56%)

Brother = 2 (22%)

Wife = 1 (11%)

Granddaughter = 1 (11%)

4.8 years (3–8)

NR

77 years (61–88)

NR

van Wezel et al. (2016) [52] Netherlands

To explore perspectives of female Turkish, Moroccan & Surinamese Creole carers in the Netherlands of relatives with dementia & to explore similarities between these groups.

NR (20–84)

Turkish = 26 (38%)

Moroccan = 26 (38%)

Surinamese = 17 (24%)

Daughter = 55 (80%)

Daughter in-law = 9 (13%)

Wife = 3 (4%)

Other = 2 (3%)

NR

21 (30%)

NR

NR

Vellone et al. (2002) [53] Italy

To improve understanding of the experiences of Italian carers of people with Alzheimer’s disease.

57 (35–86)

Italian = 26 (100%)

Spouse = 19 (73%)

Adult child = 7 (27%)

5 years (2–9)

NR

NR

NR

Wallhagen & Yamamoto-Mitani (2006) [54] USA

To compare & contrast cultural influences & familial role expectations of Japanese carers of older adults with dementia in Japan with American carers of older adults with dementia in the USA.

Japanese = 54 (47–57)

American = 49 (41–63)

American = 9 (53%)

Japanese = 7 (47%)

Daughter = 12 (75%)

Daughter in-law = 3 (19%)

Niece = 1 (6%)

NR

NR

Japanese care recipient = 82 years (NR)

NR

American care recipient = 80 years (NR)

NR

Yamamoto & Wallhagen (1997) [55] Japan

To develop concepts to facilitate understanding of why carers of people with dementia can continue providing care despite difficulties.

NR (32–63)

Japanese = 26 (100%)

Daughter = 13 (50%)

Daughter in-law = 13 (50%)

NR

18 (69%)

NR (63–99)

NR