Table 1.
Demographic profile.
| Categorical variable | N (%) | Mean DKAS (SD.) |
|---|---|---|
| All participants | 150 (100) | 34.8 (7.0) |
| Recruitment source | ||
| Memory service, mental health service | 72 (48.0) | 33.3 (6.2) |
| Join dementia research | 58 (38.7) | 36.5 (7.1) |
| Newsletters and other | 20 (13.3) | 35.4 (8.6) |
| Gender of carer | ||
| Female | 116 (77.3) | 34.9 (7.1) |
| Male | 34 (22.7) | 34.5 (7.2) |
| Gender of person living with dementia | ||
| Female | 82 (54.7) | 34.5 (7.5) |
| Male | 68 (45.3) | 35.6 (6.5) |
| Relationship with person living with dementia | ||
| Spouse | 70 (46.7) | 33.7 (6.9) |
| Adult child | 72 (48.0) | 35.6 (7.1) |
| Other+ | 8 (5.3) | 38.0 (5.7) |
| Dementia severity (CDR) | ||
| Mild | 38 (25.3) | 34.0 (7.6) |
| Moderate | 64 (42.7) | 33.8 (7.0) |
| Severe | 48 (32.0) | 36.8 (6.3) |
| Where does person living with dementia live? | ||
| Live at home with participant carer | 72 (48.0) | 33.4 (7.1) |
| Lives at home with others/alone | 37 (24.7) | 35.4 (7.1) |
| Residential and supported accommodation | 41 (27.3) | 36.7 (6.4) |
| Rurality | ||
| Urban major conurbation | 70 (47.0) | 35.9 (6.7) |
| Urban city and town | 62 (41.6) | 34.0 (7.2) |
| Rural# | 17 (11.4) | 33.7 (7.6) |
| Deprivation | ||
| 1st (most deprived) | 5 (3.3) | 32.4 (9.5) |
| 2 | 9 (6.0) | 36.1 (5.9) |
| 3 | 9 (6.0) | 33.3 (2.3) |
| 4 | 17 (11.3) | 36.6 (6.8) |
| 5 | 15 (10.0) | 34.5 (8.1) |
| 6 | 11 (7.3) | 31.9 (7.7) |
| 7 | 16 (10.7) | 35.3 (6.7) |
| 8 | 17 (11.3) | 36.0 (7.3) |
| 9 | 22 (14.7) | 35.1 (6.5) |
| 10th (least deprived) | 29 (19.3) | 34.5 (7.9) |
| Other experience of dementia – occupation | ||
| No | 117 (78.0) | 34.3 (7.2) |
| Yes | 33 (22.0) | 36.8 (6.2) |
| Other experience of dementia – personal | ||
| No | 65 (43.3) | 34.2 (7.3) |
| Yes | 85 (56.7) | 35.3 (6.8) |
| Attendance at a carer support group | ||
| No | 86 (57.3) | 35.2 (6.9) |
| Yes | 64 (42.7) | 34.3 (7.2) |
| Knowledge of end-of-life preferences | ||
| No | 11 (7.3) | 31.2 (7.2) |
| Yes | 110 (73.3) | 34.8 (6.9) |
| Not sure | 29 (19.3) | 36.5 (7.0) |
| Formalised documents of end-of-life care | ||
| No | 79 (52.7) | 34.5 (7.5) |
| Not sure | 8 (5.3) | 34.5 (8.1) |
| Yes | 63 (42.0) | 35.3 (6.3) |
| If your relative died soon, how emotionally prepared would you be?^ | ||
| Very prepared | 41 (28.7) | 34.4 (6.6) |
| Somewhat prepared | 56 (39.2) | 33.5 (7.1) |
| Not at all/not sure/declined to answer | 46 (32.2) | 35.7 (6.9) |
| If your relative died soon, how practically prepared would you be?^ | ||
| Very prepared | 82 (57.3) | 34.8 (6.9) |
| Somewhat prepared | 38 (26.6) | 34.0 (7.2) |
| Not at all/not sure/declined to answer | 23 (16.1) | 34.2 (6.7) |
| Grief | ||
| Low grief (MMCGI- SF <58) | 77 (51.3) | 35.3 (7.1) |
| High grief (MMCGI- SF >57) | 73 (48.7) | 34.2 (6.9) |
| Carer variable | Mean (SD[range]) | |
| Age | 63.0 (12.1 [28-86]) | |
| Years of education | 16.2 (4.0 [8-33]) | |
| HLQ, Appraisal of health information | 2.8 (0.6 [1.4-4]) | |
| HLQ, Navigating the health care system | 3.4 (0.7 [1.33-5]) | |
| HLQ, understand health care information | 4.0 (0.6 [1.8-5]) | |
+ Included: siblings (n = 3), granddaughters (n = 2), a niece, a nephew and an ex-spouse; #Includes: Urban City and Town in a sparse setting, Rural Town and Fringe, Rural Village, Rural Hamlets and Isolated Dwellings; ^missing data for seven participants; question added after initial interviews completed. CDR = Clinical Dementia Rating; DKAS = Dementia Knowledge Assessment Scale; MMCGI-SF = Marwit-Meuser Caregiver Grief Inventory Short Form, HLQ = Health Literacy Questionnaire, SD = standard deviation.