Table 1.
Overview of focus groups and characteristics of participants per country. Values are numbers unless stated otherwise
| People with dementia | Total | DE | IE | IT | NL | NO | PTc | SE | UK |
| Number of focus groups | 14 | 3 | 2 | 2 | 2 | 3 | 1 | 1 | |
| Number of participants | 51 | 10 | 7 | 6 | 8 | 9 | 4 | 7 | |
| Number of female participants | 28 | 7 | 6 | 4 | 2 | 4 | 3 | 2 | |
| Mean age, years (range) | 76 (54–96) | 68 (55–84) | 68.5 (54–88) | 80 (75–87) | 76 (64–85) | 75 (61–86) | 90 (82–96) | 75 (66–85) | |
| Mean time since diagnosis, years (range) | 2.5 (0–10) | 2.5 (0–7) | 2 (1–5) | ≤ 1 | 5.5 (0–10) | 3.5 (1–6) | 3.5 (2–5) | 3 (1–6) | |
| Living alone/with family member | 16/31 | 4/6 | 3/4 | 2/4 | 4/4 | 2/7 | – | 1/6 | |
| Informal carers | Total | DE | IEd | IT | NL | NO | PT | SE | UK |
| Number of focus groups | 21 | 5 | 3 | 2 | 2 | 2 | 2 | 2 | 3 |
| Number of participants | 96 | 21 | 16 | 8 | 10 | 7 | 11 | 8 | 15 |
| Number of female participants | 77 | 18 | 12 | 8 | 9 | 6 | 8 | 5 | 10 |
| Mean age, years (range) | 63 (37–91) | 65 (47–83) | 64 (50–89) | 58 (49–70) | 77 (68–86) | 50 (37–66) | 59 (43–78) | 68 (56–91) | 66 (46–84) |
| Mean caregiving time, years (range) | 5 (1–12) | 4.5 (1–10) | 7 (2–12) | 6 (2–10) | 5.5 (1–11) | 4 (1–9) | 4 (0–8) | 3 (2–7) | 4 (1–10) |
| Relationship to person with dementia | |||||||||
| Spouse | 47 | 10 | 9 | – | 10 | 2 | 4 | 2 | 10 |
| Child | 42 | 8 | 7 | 8 | – | 3 | 7 | 5 | 4 |
| Other | 7 | 3 | – | – | – | 2 | – | 1 | 1 |
| Healthcare professionals | Total | DE | IE | IT | NL | NO | PT | SE | UK |
| Number of focus groups | 20 | 4 | 3 | 2 | 2 | 2 | 2 | 2 | 3 |
| Number of participants | 114 | 16 | 18 | 9 | 12 | 13 | 12 | 12 | 22 |
| Number of female participants | 98 | 12 | 17 | 6 | 11 | 13 | 11 | 12 | 16 |
| Mean age, years (range) | 45 (23–62) | 49 (42–60) | 42 (28–56) | 45 (26–52) | 42 (27–63) | 46 (25–61) | 41 (27–56) | 52 (44–62) | 42 (23–57) |
| Mean working experience, years (range) | 16 (0.25–42) | 17 (3–30) | 12 (2–25) | 18 (1–26) | 17 (3–35) | 13 (0.25–30) | 12 (2–30) | 23 (7–42) | 12 (0.25–30) |
| Professional backgrounds | |||||||||
| Nursesa | 60 | 9 | 10 | 3 | 5 | 10 | 5 | 11 | 10 |
| Social workers | 6 | 3 | 1 | 1 | – | – | 1 | – | – |
| General Practitioners | 5 | 1 | – | – | – | – | 3 | – | – |
| Other specialist physicians | 6 | 1 | 2 | – | – | – | – | 4 | |
| Psychologists | 10 | – | – | 1 | 6 | – | 1 | – | 2 |
| Othersb | 27 | 2 | 5 | 4 | 1 | 3 | 2 | 1 | 6 |
a Registered, assistant or community mental health nurses
b Counsellors, educators, case managers
c People with dementia living in institutional long-term care
d n = 95 due to missing data