Table 3.
Endorsement ratings of the Family Stigma Instrument domains
| Endorsement of each response option, n (%) | ||||||||
|---|---|---|---|---|---|---|---|---|
| FAMSI domain | Item wording | Strongly disagree | Somewhat disagree | Neither disagree/agree | Somewhat agree | Strongly agree | ||
| Stigma by association | Some people might … | 1 | feel embarrassed about associating with them | 6 (8.6) | 13 (18.6) | 6 (8.6) | 37 (52.9) | 8 (11.4) |
| 2 | feel uncomfortable about going to their house | 4 (5.7) | 5 (7.1) | 6 (8.6) | 41 (58.6) | 14 (20.0) | ||
| 3 | treat them more negatively | 4 (5.7) | 6 (8.6) | 10 (14.3) | 40 (57.1) | 10 (14.3) | ||
| 4 | think that the family has done something wrong because of them | 14 (20.0) | 27 (38.6) | 20 (28.6) | 5 (7.1) | 4 (5.7) | ||
| 5 | behave negatively toward them when they are with the person living with dementia in public | 7 (10.0) | 11 (15.7) | 16 (22.9) | 28 (40.0) | 8 (11.4) | ||
| 6 | avoid making friends with them | 5 (7.1) | 6 (8.6) | 11 (15.7) | 40 (57.1) | 8 (11.4) | ||
| 7 | not want to hear about any of their problems | 5 (7.1) | 8 (11.4) | 7 (10.0) | 40 (57.1) | 10 (14.3) | ||
| 8 | not invite the family to social events | 5 (7.1) | 7 (10.0) | 10 (14.3) | 32 (45.7) | 16 (22.9) | ||
| Positive aspects of caregiving | Caring for my family member living with dementia has … | 9 | enabled me to develop a more positive attitude toward life | 5 (7.1) | 24 (34.3) | 16 (22.9) | 17 (24.3) | 8 (11.4) |
| 10 | made me feel needed | 0 (0) | 11 (15.7) | 21 (30.0) | 25 (35.7) | 13 (18.6) | ||
| 11 | strengthened my spirituality and faith | 15 (21.4) | 17 (24.3) | 23 (32.9) | 8 (11.4) | 7 (10.0) | ||
| 12 | allowed me to form friendships with others in a similar situation | 6 (8.6) | 10 (14.3) | 9 (12.9) | 34 (48.6) | 11 (15.7) | ||
| 13 | made me feel that I make a positive contribution to society | 4 (5.7) | 12 (17.1) | 21 (30.0) | 24 (34.3) | 9 (12.9) | ||
| 14 | strengthened some of my relationships with family/friends | 4 (5.7) | 18 (25.7) | 14 (20.0) | 24 (34.3) | 10 (14.3) | ||
| Affective affiliate stigma | I feel … | 15 | embarrassed about them (my family member living with dementia) | 30 (42.9) | 21 (30.0) | 12 (17.1) | 7 (10.0) | 0 (0) |
| 16 | distressed about being associated with them | 37 (52.9) | 25 (35.7) | 6 (8.6) | 2 (2.9) | 0 (0) | ||
| 17 | guilty about having them in the family | 48 (68.6) | 17 (24.3) | 2 (5.7) | 1 (1.4) | 0 (0) | ||
| 18 | uncomfortable when I have friends about because of them | 28 (40.0) | 24 (34.3) | 10 (14.3) | 8 (11.4) | 0 (0) | ||
| Perceived affiliate stigma | I am … | 19 | treated differently by some people when I am with them | 12 (17.1) | 9 (12.9) | 14 (20.0) | 29 (41.4) | 6 (8.6) |
| 20 | excluded from activities when other people find out about their dementia | 14 (20.0) | 20 (28.6) | 13 (18.6) | 18 (25.7) | 5 (7.1) | ||
| 21 | aware of how some people look at me when I am out with them | 11 (15.7) | 14 (20.0) | 14 (20.0) | 26 (37.1) | 5 (7.1) | ||
| 22 | treated differently by some people because of them | 11 (15.7) | 6 (8.6) | 13 (18.6) | 34 (48.6) | 6 (8.6) | ||
| Behavioural affiliate stigma | I avoid … | 23 | introducing my friends to them | 28 (40.0) | 23 (32.9) | 8 (11.4) | 11 (15.7) | 0 (0) |
| 24 | telling people that I am related to them | 45 (64.3) | 22 (31.4) | 3 (4.3) | − | 0 (0) | ||
| 25 | making new friends because of them | 31 (44.3) | 25 (35.7) | 8 (11.4) | 6 (8.6) | 0 (0) | ||
| 26 | being seen with them | 43 (61.4) | 22 (31.4) | 4 (5.7) | 1 (1.4) | 0 (0) | ||
FAMSI, Family Stigma Instrument.