Table 3 Baseline characteristics of persons living with dementia, informal caregiver, dyads and regional characteristics
Person with dementia (n = 551) | ||
Mean age | in years | 79.5 (8.5) |
Sex | female | 57% (316) |
Social class | low | 44.4% (245) |
middle | 21.8% (120) | |
high | 7.1% (39) | |
no information | 26.7% (147) | |
Functional abilities (FAST) | 1–4 | 6.6% (36) |
5–7 | 90.2% (497) | |
no information | 8.9% (49) | |
Instrumental activities of daily living (IADL) | 0–2 | 62.7% (345) |
3–8 | 28.4% (157) | |
no information | 8.9% (49) | |
Cohen Mansfield Agitation Inventory (CMAI) | ||
inappropriate | yes | 61.7% (340) |
aggressive | yes | 15.2% (84) |
agitated | yes | 58.8% (324) |
QoL-AD | (3–52) | 28.7 (5.5) |
SACA | (1–32) | 24.4 (4.2) |
Informal caregiver (n = 551) | ||
Mean age | in years | 64 (12.9) |
Sex | female | 75% (412) |
Occupation | full-time | 14.3% (79) |
part-time | 20.7% (114) | |
none | 62.4% (344) | |
no information | 2.5 (14) | |
Time spent for care | (0-24 h/day) | 4.7 (5.4) |
Time spent for support | (0-24 h/day) | 4.6 (5.1) |
Care duration | in years | 4.2 (3.6) |
EQ VAS | (0–100) | 66.4 (19.6) |
BIZA-D Subscales; Burden due to … | ||
cognitive losses | 0–16 | 8.1 (4.7) |
aggression/resistance | 0–20 | 6.0 (4.9) |
personal constraints/health | 0–20 | 8.3 (5.8) |
lack of social recognition | 0–24 | 7.7 (5.5) |
Dyad (n = 551) | ||
Informal care relationship | couple | 50.6% (279) |
adult-child | 42.1% (232) | |
other/non-kinship | 6.7%(37) | |
no information | 0.5% (3) | |
Living situation | living together | 61.2% (337) |
not living together but close | 22.3% (123) | |
other/further away | 1.5% (8) | |
Further informal support | yes | 88% (485) |
no | 11.6% (64) | |
no information | 0.4% (2) | |
Health care service use: Information sources | ||
Informal sources | no use | 28.9% (159) |
Medical sources | no use | 35% (193) |
Nursing sources | no use | 44.8% (247) |
Civil society sources | no use | 70% (369) |
Health care service use: Professional care | ||
Medical services | no use | 8.2% (45) |
Therapeutic services | no use | 69.7% (384) |
Nursing services | no use | 41.4% (228) |
Support services | no use | 68.2% (376) |
Stability of care arrangements | 0 = care at home does not work anymore | 3.3% (18) |
1 = urgent need for more help | 7.2% (40) | |
2 = if dementia progresses, more help is needed | 51.9% (286) | |
3 = situation is well arranged | 30.3% (169) | |
no information | 7.3% (34) | |
Region | ||
Regional socio-economic deprivation | low | 7.2% (40) |
middle | 68.6% (378) | |
high | 24.1% (133) | |
Regional outpatient care infrastructure | – | 7.8 (1.9)a |
Regional medical infrastructure | – | 63.5 (6.1)b |