Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors

Figures & data

Table 1 Characteristics of the adult children and their parent with YOD

The adult child			The parent with YOD
Relationship	Siblings	Household	Relationship	Household
Daughter	Two half siblingsa	Living at parental homeb	Father	Married
Daughter	Two siblings	Living aloneb,c	Mother	Widow
Daughter	Five siblings	Living aloneb,c	Mother	Divorced
Daughter	Two siblings	Cohabitationc	Mother	Widow
Daughter	Two siblings	Marriedc	Mother	Married
Daughter	None	Cohabitationb	Mother	Divorced
Daughter	One sibling	Cohabitationc	Father	Married
Daughter	One sibling	Marriedc	Father	Divorced
Daughter	One sibling	Cohabitationb,c	Father	Married
Son	Three siblingsa	Living at parental homeb	Father	Married
Son	One sibling	Living with his mother	Father	Divorced
Son	Three siblingsa	Living with his sisterb	Father	Married
Son	One sibling, two half siblingsa	Cohabitation	Father	Marriedd
Son	None	Living aloneb	Father	Married

Notes:

a Do not live together in the same household;

b lived together with the parent when the first signs of dementia were revealed or the diagnosis was made;

c have their own children;

d the parent is married again.

Abbreviation: YOD, young-onset dementia.

Table 2 Questions/themes in the interviews of the adult children of a parent with YOD

• How was it during those years and how is it now for you to have a parent with YOD?

• How has this disease affected your life in the different stages of the disorder?

• How has the disorder affected your family and the relationships within the family, and among your friends in the different stages of the disorder?

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

• What kind of support have you received, do you receive, or you are in need of today?

• Have you had to make decisions for your parent with YOD, and if so, how has that been?

Abbreviation: YOD, young-onset dementia.