Metaphors for the Meaning of Caring for a Spouse with Dementia

Figures & data

Table 1 Characteristics of the Spouses and of the People with Young-Onset Frontotemporal Dementia (YO-FTD) at the Time the Diagnosis Was Given

The Spouses			The People with YO-FTD
Relationship (Age)	In Workforce	Formal Services	Age at Diagnosis	Years Since Diagnosis (Months)	Years with Symptoms Before Diagnosis (Months)	In Workforce at Time of Diagnosis	Formal Services
Wife (51)	Yes/sick leave	Hospital support/psychological support	48	3	1 (6)	Yes/sick leave	Died four months ago
Wife (60)	Disability benefits	Hospital support/support group	61	0 (4)	3	Sick leave	Hospital support
Wife (54)	Disability benefits	Hospital support	57	1	3	Retired	Day care once a week^c
Wife (56)	Yes/sick leave	Hospital support/support group	57	1 (5)^a	5	Sick leave	Hospital support/day care^c
Wife (56)	Yes	Hospital support	59^a	0 (6)	9	Non/Disability benefits	Non
Wife (58)	Yes/Disability benefits	Hospital support/support groups	63	1	10	Disability benefits	Part time nursing home/day care^c
Wife (61)	Yes/sick leave		62	2	5–6	Sick leave	Nursing home
Wife (60)	Yes		54	11	2–4	Sick leave	Nursing home^b
Wife (63)	Yes/sick leave	Hospital support/Support group	67	1	4–5	Yes	Hospital support
Wife (64)	Yes/sick leave	Hospital support/Support groups	64	1 (6)	11	Non/Disability benefits	Nursing home
Husband (57)	Yes	Municipality support	55	0 (4)	2–3	Disability benefits	Nursing home
Husband (60)	Yes	Hospital support/support group	55	5	4	Sick leave	Nursing home
Husband (60)	Disability benefits	Hospital support	58	2	6	Disability benefits	Part time nursing home/day care^c
Husband (62)	Yes/sick leave	Hospital support	58	3	2	Yes/sick leave	Day care^c
Husband (62)	Yes	Hospital support	60^a	5	7–8	Yes/sick leave	Hospital support/day care^c
Husband (69)	Retired	Hospital support/support groups	63^a	0 (6)	15	Disability benefits	Day care^c

Notes: ^aAt first an Alzheimer diagnose and then FTD diagnose ^bNursing home for people with young-onset dementia. ^cThe person with FTD receive day care.

Table 2 Thematic Questions in the Interviews with Spouses of Younger People with Frontotemporal Dementia (YO-FTD)

How has it been these past years and how is it now for you having a spouse with dementia?

How has the disorder affected your life?

How has the disorder affected your family and the relationships within the family and among friends?

When you look back, is it possible for you to describe something that has been or could have been of some help for you and your family during the different stages of the disorder?

What kinds of support have you received, do you currently receive, or are in need of today?

Have you had to make decisions for your spouse?