Table 1. Sample demographics.
| n (%) or ẋ (SD) | ||||
|---|---|---|---|---|
| All interview participants (n = 86) | Community dwelling interview partiicpants (n = 65) | Interview participants in RACF (n = 19)b | ||
| Participants with YOD (n = 86) | ||||
| Age at interview | 62.9 (6.2) R: 45–79 |
60.8 (8.8) R: 45–72 |
66.5 (7.2) R: 57–79 |
|
| Age at onset | 55.3 (6.0) R: 35–64 |
55.1 (6.1) R: 35–64 |
56.6 (5.2) R: 47–64 |
|
| Male | 61 (70.9) | 45 (70.8) | 13 (68.4) | |
| Years of education | 13.2 (4.2) | 13.3 (3.6) | 11.8 (4.2) | |
| English as a second language | 14 (16.3) | 10 (15.4) | 4 (21.1) | |
| Dementia type | Alzheimer’s disease (AD) | 47 (54.7) | 37 (56.9) | 9 (47.4) |
| Frontotemporal dementia (FTD) | 14 (16.3) | 9 (13.9) | 5 (26.3) | |
| Unspecified dementia | 6 (7.0) | 3 (4.6) | 3 (15.8) | |
| Mixed dementias | 5 (5.8) | 3 (4.6) | 1 (5.3) | |
| Vascular dementia (VaD) | 5 (5.8) | 5 (7.7) | 0 (0) | |
| Progressive supranuclear palsy | 4 (4.7) | 4 (6.2) | 0 (0) | |
| Dementia in Huntington’s disease | 3 (3.5) | 3 (4.6) | 0 (0) | |
| Lewy Body Disease (LBD) | 2 (2.3) | 1 (1.5) | 1 (5.3) | |
| Care arrangements (at interview) | No supporter | 1 (1.2) | 1 (1.5) | 0 (0) |
| Living with supporter | 64 (74.4) | 64 (98.5) | 0 (0) | |
| Residential Aged Care Facility | 19 (22.1) | N/A | 19 (100) | |
| Deceased | 2 (2.3) | N/A | 0 (0) | |
| WHO Disability Assessment Schedule | 0.57 (0.3) | 0.50 (0.2) | 0.77 (0.2) | |
| Cambridge Behaviour Inventory—Revised | 52.1 (31.4) | 46.3 (22.1) | 56.7 (30.4) | |
| Supporters (n = 85) | ||||
| Whole sample (n = 85) | Living with participant (n = 64) | Not living with participant (n = 21) | ||
| Age at interview | 60.2 (9.0) R: 31–77 |
59.9 (8.0) R: 33–74 |
61.2 (11.6) R: 31–77 |
|
| Male | 21 (24.4) | 17 (26.6) | 4 (19.1) | |
| Supporter years of education | 13.3 (3.9) | 13.2 (4.1) | 13.1 (4.6) | |
| Relationship to participant with YOD | Spouse / partner | 71 (82.6) | 57 (89.1) | 14 (66.7) |
| Sibling | 4 (4.7) | 1 (1.6) | 3 (14.3) | |
| Son / daughter | 4 (4.7) | 1 (1.6) | 3 (14.3) | |
| Parent | 3 (3.5) | 2 (3.2) | 1 (4.8) | |
| Friend / neighbour | 3 (3.5) | 3 (4.7) | 0 (0) | |
| Time spent caring (months) | 81.4 (59.2) | 78.3 (56.7) | 123.6 (46.7) | |
| Ever lived with participant with YOD | 82 (95.3) | N/A | 20 (95.2) | |
| Employment | Not in the work force | 40 (47.1) | 29 (44.6) | 12 (57.2) |
| Part time | 24 (28.3) | 19 (29.2) | 3 (14.3) | |
| Full time | 21 (24.7) | 16 (24.6) | 6 (28.6) | |
| Working hours (per week) | 13.32 (3.9) | 15.5 (8.0) | 17.2 (21.9) | |
| Zarit Burden Interview | 12.3 (8.0)a | 12.8 (7.3) | 10.6 (9.5)a | |
| Lubben Social Network Scale | 15.8 (6.5)a | 15.9 (5.7) | 15.6 (8.4)a | |
| Hours of informal care in previous month (n = 64) | 351.6 (338.9) | 348.4 (340.6) | 0 (0) | |
an = 83, excluding supporters of two deceased participants with dementia
bExcludes 2 people with YOD who died prior to interview
R = Range; SD = standard deviation; YOD = Young onset dementia