Table 2.
Study and caregiver sample characteristics in the 50 studies included in the review
| Author (year) | Country | Sample size (n) | Age, mean (SD) | Gender (% F) | Relationship to care‐recipient (%) | CNC |
|---|---|---|---|---|---|---|
| Castellano‐Tejedor and Lusilla‐Palacios (2017) 58 | Spain | 75 | 48.55 (12.55) | 84.0 |
Spouse/partner: 44 Offspring: 39 Sibling: 8 Parent: 5 Other: 3 |
SCI |
| Senturk et al. (2018) 59 | Turkey | 103 |
56.5 (9.91) |
85.4 |
Spouse: 36.9 Mother: 42.7 Father: 16.5 Relative: 3.9 |
Dementia |
| Garity (1997) 76 | USA | 76 |
61.5 (14.1) |
71.0 |
Spouse: 43 Offspring: 42 Sister: 8 Grandchild: 7 |
AD |
| Scholten et al. (2020) 60 | The Netherlands | 157 |
55.5 (12.4) |
61.8 |
Partner: 78.3 Parent: 8.9 Child: 7 Other: 5.8 |
SCI, ABI |
| Brickell et al. (2020) 77 | USA | 346 |
40.6 (9.3) |
96.2 |
Spouse/partner: 91 Other: 9 |
TBI |
| Simpson and Jones (2013) 91 | Australia |
61 (TBI: 30 SCI: 31) |
ABI: 54 (12) SCI: 50 (14) | 90.2 |
Parent: 39.4 Spouse: 54.1 Other: 6.6 |
TBI, SCI |
| Cousins et al. (2013) 61 | UK | 27 | NIV | 74.0 |
Spouse/partner: 40.1 Offspring: 7.4 Sibling: 11.1 Parent: 3.7 |
MND |
| 57.56 (11.70) | ||||||
| Declined NIV | ||||||
| 65.88 (10.45) | ||||||
| Elnasseh et al. (2016) 62 | Spain | 105 | 57.71 (13.35) | 74.3 | NR | Dementia |
| Ertl et al. (2019) 63 | Spain | 95 |
51.1 (13.85) |
78.0 |
Spouse/partner: 60 Offspring: 26.3 Sibling: 9.5 Parent: 4.2 |
PD |
| Fitzpatrick and Vacha‐Haase (2010) 78 | USA | 30 |
76.4 (6.0) |
70.0 | Spouse: 100 | Dementia (AD or other) |
| Kimura et al. (2019) 87 | Brazil | 43 |
51.1 (15.2) |
97.1 |
Spouse: 48.8 Offspring: 34.9 Sibling: 9.3 Other: 7 |
Young‐onset AD |
| Ruisoto et al. (2020) 64 | Spain | 283 | 59.93 (14.56) | 65.7 |
Offspring: 55.5 Spouse: 40.6 Other: 3.9 |
Dementia |
| Scott (2013) 46 | USA | 110 |
63 (11) |
80.2 |
Spouse: 36 Offspring: 59.5 Other: 4 |
AD |
| Pessotti et al. (2018) 88 | Brazil | 50 |
54.7 (11.1) |
88.0 |
Wives: 32 Daughters: 54 |
Dementia |
| Wilks and Vonk (2008) 79 | USA | 304 |
63 (13.5) |
77.0 |
Spouse: 43 Offspring: 39 Friend: 4 Other: 14 |
AD |
| Rosa et al. (2020) 90 | Brazil | 106 |
57.9 (13.75) |
79.2 |
Spouse: 37.7 Offspring: 52.8 Other: 9.4 |
AD |
| Chan et al. (2019) 83 | Malaysia | 207 |
50.4 (14.5) |
79.7 | Spouse: 16.4 | AD |
| Offspring: 61.4 | ||||||
| Other: 17.4 | ||||||
| Unknown: 4.8 | ||||||
| Dias et al. (2016) 89 | Brazil | 58 |
62.5 (13.44) |
79.3 |
Spouse: 44.8 Offspring: 51.7 Other: 3.4 |
Dementia (AD, vascular dementia, mixed dementia) |
| Serra et al. (2018) 65 | Spain | 326 |
59.9 (14.6) |
65.7 |
Spouse: 55.5 Offspring: 40.6 Other: 3.9 |
Dementia |
| Sutter et al. (2016) 47 | Spain | 127 |
57.14 (13.01) |
77.2 |
Spouse/partner: 17.8 Offspring: 22.2 Sibling: 60 |
Dementia |
| Jones et al. (2018, 2019) 48 | UK | 80 | NR | 73.8 |
Spouse: 65 Other: 35 |
Dementia |
| Jones, Killett et al. (2019) 55 ; Jones, Woodward et al. (2019) 49 | UK | 110 | NR | 66.0 |
Spouse: 62 Other: 38 |
Dementia |
| Wilks et al. (2011, 2018) 80 | USA | 691 | 61a | 79.8 |
Spouse: 16.7 Offspring: 51.3 Sibling: 4.4 Grandchild: 6.6 Friend: 3.8 Other: 16.9 |
AD |
| Wilks (2008) 66 ; Wilks and Croom (2008) 82 | USA | 229 | 45a | 90.0 |
Spouse: 30 Offspring: 49 Friend: 8 Grandchild: 5 Other: 8 |
AD |
| Anderson et al. (2019) 92 | Australia | 131 |
58.2 (14.3) |
80.9 |
Spouse: 45 Parent: 44.3 Other: 10.7 |
TBI |
| Hayas et al. (2015) 50 | Spain | 237 |
55.6 (12.4) |
77.6 |
Spouse: 47.3 Parent: 28.3 Child: 14.8 Sibling: 7.2 Other: 2.5 |
ABI |
| Vatter et al. (2018, 2020) 56 , 57 | UK | 136 |
69.44 (7.62) |
85.3 |
Married: 94.9 Cohabitating: 5.1 |
PD‐related dementia |
| Ledbetter et al. (2020) 67 | USA | 312 |
42.3 (11.9) |
80.8 | Spouse/partner: 100 | SCI |
| O'Rourke et al. (2010) 68 | Canada | 105 |
69.59 (8.66) |
55.0 | Spouse: 100 | AD |
| Rivera‐Navarro et al. (2018) 51 | Spain | 326 |
60.1 (14.5) |
67.2 |
Spouse: 41.4 Offspring: 52.5 Son‐/daughter‐in‐law: 2.5 Sibling: 0.9 Other: 2.5 |
Dementia |
| Tyler et al. (2020) 69 | USA | 253 | 59.92 (14.68) | 73.1 |
Spouse: 68.8 Parent: 21.7 Friend: 1.2 Sibling: 4.3 Cousin: 0.4 Aunt/uncle: 1.2 Other: 2.4 |
PD |
| Ghaffari et al. (2019) 84 | Iran | 54 |
Control 43.4 (6.3) Intervention 42.6 (6.2) |
Control 70.0 Intervention 88.0 |
Control Spouse: 20 Offspring: 80 Intervention Spouse: 12 Offspring: 88 |
AD |
| Lavretsky et al. (2010) 75 | USA | 40 |
Control 63.3 (13.4) Intervention 60 (9.4) |
Control 55.0 Intervention 75.0 |
Spouse: 37.5 Offspring: 62.5 |
AD |
| MacCourt et al. (2017) 70 | Canada | 200 | 64.4a | 79.0 |
Spouse: 61.9 Parent: 23 Other: 5.1 |
Dementia/AD |
| Pandya (2019)b , 85 | India | 96/96 (C/I) |
Control 52.5 (10.67) Intervention 52.68 (11.03) |
Control 86.5 Intervention 81.3 |
Spouse: 54.6 Offspring: 23.3 Son/daughter in‐law: 22.1 |
AD |
| Maneewat et al. (2016) 86 | Thailand | 150 | NR | NR | NR | Dementia |
| Bull (2014) 71 | USA | 18 |
64 (14.1) |
67.0 |
Spouse: 39 Offspring: 61 |
Dementia |
| Kidd et al. (2011) 72 | USA | 20 | 60.2a | 85.0 | Spouse: 100 | Dementia |
| Bekhet and Avery (2018) 19 | USA | 80 |
57.0 (15.6) |
90.0 | NR | Dementia |
| Roberts and Struckmeyer (2018) 73 | USA | 33 | NR | 87.9 |
Spouse: 42.4 Parent: 48.5 Offspring: 6.1 Sibling: 3 |
Dementia |
| Han et al. (2019) 25 | USA | 39 | 62 (7.4) | 76.9 | Spouse/partner: 7.7 | AD and related dementias |
| Offspring: 82.1 | ||||||
| Other: 10.2 | ||||||
| Liu et al. (2020) 74 | USA | 27 | 69.04 (10.51) | 77.8 | Spouse: 46.2 | Dementia |
| Offspring: 50 | ||||||
| Sibling: 3.85 | ||||||
| Donnellan et al. (2015, 2017, 2019) 38 | UK | 23 |
75 (7.46) |
69.6 | Spouse: 100 | Dementia |
Abbreviations: ABI, acquired brain injury; AD, Alzheimer's disease; CNC, chronic neurological condition; MND, motor neuron disease; NIV, noninvasive ventilation; NR, not reported; PD, Parkinson's disease; SCI, spinal cord injury; TBI, traumatic brain injury.
SD for the total sample not reported.
Pretest values reported.