“Who to Tell, How and When?”: Development and Preliminary Feasibility of an Empowerment Intervention for People Living with Dementia Who are Fearful of Disclosing Their Diagnosis

Figures & data

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)

Table 2 Comparison Between Original HOP and “Who to Tell, How and When?” Adaptation for People Living with Dementia

Honest Open Proud			“Who to Tell, How and When?”
Session TitleContents			Session Title Contents
Considering the pros and cons of disclosing:	The stories we tell ourselves/identify beliefs participants hold about themselves; Identifying hurtful and helpful attitudes about mental illness; Challenge personally hurtful beliefs; Weigh pros and cons of disclosure to facilitate a decision on whether to disclose.	Session 1	Talking about dementia	Talking about dementia – what’s in a name? What might a diagnosis mean for a person’s sense of “who they are” and their outlook on life? What are the advantages and disadvantages of telling or not telling others
Different ways to disclose:	Different ways to disclose and weighing the pros and cons of each; Selecting a person to whom one might disclose; Consider how others might respond to a disclosure and how their response might affect one’s self.	Session 2	Who to tell, how and when?	Different ways to tell others Who already knows and who in your life do you want or may want to tell. Who are you unsure about and must not be told How and when to tell others? What may the reactions of others be?
Telling your story	How to tell one’s story in a personally meaningful way; Review how telling one’s story went; Peer support for disclosure; Put together all that’s been learnt in order to move forward.	Session 3	Support for me, for you, for us	Sharing experiences of telling others Planning to tell someone (who, how and when?) Whose diagnosis is it?* When other people do the telling* Where may you find sources of support*

Notes: *Elements unique to “Who to tell, how and when?”.

Table 3 Summary of Readability Statistics for the Honest, Open, Proud Program and the “Who to Tell, How and When?” Dementia Adaptation

Readability Domains	Honest, Open, Proud, Program (N)	The “who to Tell, How and When?” Intervention (N)
Words	25,126	2542
Characters	124,461	14,034
Paragraphs	1130	217
Sentences	1576	135
Sentences per paragraph	2.7	1.9
Words per sentence	14.3	12.4
Characters per word	4.7	4.4
Passive sentences	8%	3%
Flesch reading ease^a	60.6	71.3
Flesch-Kincaid grade level^b	8.2	6.4

Notes: ^aScore metric between 0 to 100, higher scores indicated greater readability. ^bEquivalent to United States grade level of education.

Table 4 Participant Characteristics for “Who to Tell, How and When?” Intervention Groups

Sociodemographic Characteristics	Group 1		Group 2
	PLWD	Carers	PLWD	Carers
Age, years Mean (SD)	77.22 (11.55)	71.33 (8.37)	72.52 (5.94)	72.31 (2.47)
Gender (M/F)	1/2	1/2	2/2	2/2
Months since diagnosis	16.66	–	25.75	–
Type of dementia
Alzheimer’s Disease	2	–	4	–
Vascular Dementia	1	–	0	–
Relationship between PLWD and carer
Spousal	2		4
Other	1		0
Ethnicity
White	2	3	4	3
Other Ethnic Group	1	0	0	1
Participant Session Attendance
All Sessions	2	1	3	3
Two Sessions	1	0	0	1
One Session	0	2	1	0

Abbreviation: PLWD, people living with dementia.

Figure 1 MRC framework for development and feasibility testing for complex interventions.

Figure 2 Recruitment and attrition of participants attending the “who to tell, how and when?” intervention.