Table 1.
Summary of Stakeholder Consultation Results
| Response Categories | PLWD (N = 18) | Family Carers (N = 85) | Health/Social Care Worker (N = 43) | Member of Public (N = 64) | Researcher/Academic (N = 13) | Other (N = 3) |
|---|---|---|---|---|---|---|
| Barriers to Disclosure N(%) | ||||||
| Worry that others will view them differently (example, less able) | 11(61) | 60(71) | 35(81) | 52(81) | 12(92) | 3(100) |
| Shame | 7(38) | 23(27) | 22(51) | 21(33) | 8(62) | 3(100) |
| Unsure of what to say or what language to use | 7(38) | 25(29) | 21(49) | 18(28) | 4(31) | 2(67) |
| Not wanting to use the word “dementia” | 5(28) | 39(46) | 29(67) | 17(27) | 7(54) | 2(67) |
| Not knowing who to tell | 7(39) | 11(13) | 14(33) | 14(22) | 7(54) | 1(33) |
| Scared of what might be ahead | 9(50) | 54(64) | 27(63) | 38(59) | 10(77) | 3(100) |
| Talking about it makes it more real | 6(33) | 44(52) | 25(58) | 35(55) | 6(46) | 2(67) |
| Not accepting/denying the diagnosis | 3(17) | 40(47) | 30(70) | 29(45) | 10(77) | 3(100) |
| Worry about losing relationships | 5(28) | 15(18) | 24(56) | 16(25) | 8(62) | 1(33) |
| Worry that others may avoid or exclude them | 9(50) | 36(42) | 27(63) | 28(44) | 11(85) | 1(33) |
| Not wanting to burden or upset others | 8(44) | 50(59) | 28(65) | 48(75) | 8(62) | 3(100) |
| Carer or family not wanting them to tell others | 4(22) | 13(15) | 20(47) | 13(20) | 8(62) | 1(33) |
| Other | 2(11) | 7(8) | 3(7) | 2(3) | 1(8) | 1(33) |
| Preferred Delivery Method N(%) | ||||||
| Face to Face | 13(72) | 74(87) | 30(70) | 53(83) | 10(77) | 2(67) |
| Self-Guided | 8(44) | 21(25) | 12(28) | 13(20) | 6(46) | 1(33) |
| Other | 4(22) | 15(18) | 11(26) | 8(13) | 5(38) | 1(33) |
| Barriers to Engagement N(%) | ||||||
| Not knowing enough about dementia | 9(50) | 18(21) | 14(33) | 23(36) | 4(31) | 1(33) |
| Embarrassment | 14(78) | 55(65) | 31(72) | 42(66) | 7(55) | 3(100) |
| Wanting to “keep it in the family” | 10(56) | 55(65) | 32(74) | 28(44) | 8(62) | 2(67) |
| Not wanting “outside help” | 7(39) | 62(73) | 31(72) | 38(59) | 10(77) | 2(67) |
| Fear of diagnosis | 7(39) | 47(55) | 37(86) | 35(55) | 6(46) | 3(100) |
| Wanting to keep the diagnosis to themselves | 10(56) | 42(49) | 31(72) | 28(44) | 10(77) | 2(67) |
| May have other ways of deciding who to tell, how and when | 6(33) | 15(18) | 15(35) | 7(11) | 8(62) | 1(33) |
| Not knowing the programme exists | 10(56) | 65(76) | 37(86) | 53(83) | 10(77) | 2(67) |
| Worrying about travelling (if it is a group programme) | 6(33) | 34(40) | 28(65) | 22(34) | 9(69) | 1(33) |
| Not wanting to be in a group with other people who have dementia | 10(56) | 56(66) | 29(67) | 27(42) | 11(85) | 2(67) |
| Other | 0(0) | 3(4) | 6(14) | 3(5) | 3(23) | 1(33) |
| Facilitators to Engagement N(%) | ||||||
| Previous knowledge about dementia | 8(44) | 24(28) | 10(23) | 20(31) | 4(31) | 0(0) |
| Support from their family or friends | 15(83) | 79(93) | 39(91) | 49(77) | 12(92) | 3(100) |
| Trained facilitator with personal experience of dementia | 16(89) | 59(69) | 35(81) | 48(75) | 8(62) | 2(67) |
| More information to help them decide if it is for them | 10(56) | 44(52) | 28(65) | 33(52) | 10(77) | 1(33) |
| Group delivery to take place outside clinical settings (eg community centre) | 8(44) | 35(41) | 30(70) | 25(39) | 9(69) | 0(0) |
| Built-in involvement of primary supporter | 8(44) | 42(49) | 18(42) | 25(39) | 9(69) | 1(33) |
| Other | 3(17) | 3(4) | 5(12) | 2(3) | 2(15) | 0(0) |