Table 2.
Study aims and participant demographics
| Authors (date) Country | Aims | Carer numbers | Carer mean age in years (range) | Carer gender (% female) | Carer ethnicity or nationality (%) | Relationship to care recipient (%) | Mean length caring in years (range) | Carer and care recipient co-habiting (%) | Care recipient mean age (range), gender (% male) |
|---|---|---|---|---|---|---|---|---|---|
| Albinsson & Strang (2003) [30] Sweden | To explore issues of freedom, responsibility, existential isolation, death & meaning. | 20 | 59 (42–81) | 12 (60%) | 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. | 26 | 74 (55–87) | 0 (0%) | 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. | 30 | 43.9 (25–83) | 19 (63%) | 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. | 12 | NR (66–80) | 12 (100%) | 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. | 5 | NR (46–68) | 4 (80%) | 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. | 30 | 50 (32–71) | 0 (0%) |
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. | 45 | NR (32–85) | 0 (0%) |
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. | 12 | 54 (30–80) | 12 (100%) | 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. | 8 | 67 (48–84) | 7 (88%) | 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. | 6 | 69 (64–72) | 3 (50%) | 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. | 13 | 48 (32–60) | 0 (0%) | 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. | 10 | 55 (37–86) | 7 (70%) | 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. | 9 | NR | 6 (67%) | 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. | 280 | 71 (55–79) | 162 (58%) | 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. | 6 | 67 (61–73) | 3 (50%) | 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. | 39 | NR | 32 (82%) | 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. | 12 | 34 (19–47) | 7 (58%) | 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. | 12 | 65 (41–86) | 10 (83%) | 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. | 14 | NR (68–90) | 0 (0%) |
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. | 18 | 61 (NR) | 16 (89%) | 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. | 8 | NR (64–92) | 0 (0%) | 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. | 9 | 54 (31–80) | 8 (88%) | 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. | 69 | NR (20–84) | 69 (100%) |
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. | 26 | 57 (35–86) | 20 (77%) | 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. | 16 |
Japanese = 54 (47–57) American = 49 (41–63) |
16 (100%) |
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. | 26 | NR (32–63) | 26 (100%) | Japanese = 26 (100%) |
Daughter = 13 (50%) Daughter in-law = 13 (50%) |
NR | 18 (69%) |
NR (63–99) NR |
NR Not reported