Table 1 Overview of the instruments per group

Attitudes towards the end of life

• 4 items from the Death Anxiety Questionnaire (58)

X

X

X

• one item of each of the five subscales from the Death Attitude Profile-Revised (DAP-R) (59, 60)

X

X

X

• Item about general level of comfort with talking about the end of life (11)

X

X

X

Caregiver burden

Zarit Burden Interview, 6-item version (ZBI-6) (61–65)

X

Concerns about future

Three items from the subscale ‘Preparation for end of life’ of the Quality of life at the end of life (QUAL-E) (68)

X

Coping styles

Brief COPE subscales: Use of instrumental social support; Active coping; Denial; Use of emotional social support; Acceptance; Planning; Religious coping (69, 70)

X

X

X

Decision-making

• Is your relative capable of making decisions on medical treatments by themselves? (11)

X

• Does your relative’s faith or spiritual background influence decisions about care and treatment? (11, 71)

X

• Medical decision making (11)

X

Dementia

• Dementia diagnosis

• Quick Dementia Rating System (QDSR) - cognitive subscale (72)

O

O

Demographic variables

Age, gender, educational level, country of birth, religious background, worked in healthcare, relation to person with dementia, living situation of person with dementia, work status family caregiver

O

X

X

Goals of care

• The most important goal of [your relative’s] health care is to preserve my [his/her] life as long as possible, even if that requires treatments that may cause pain or discomfort. (11)

X

X

• When you think about the goals of care for your relative, which of the following do you most strongly consider? what you think your relative would probably want for themselves, what you want for your relative, what you think the physician of your relative wants for themselves, and don’t know

X

Illness cognition

Rating of the following statements:

• Dementia is a disease you can die from. (11, 37)

X

X

X

• Dementia is a normal part of the ageing process. (73, 74)

X

X

X

• Palliative care applies from the time of diagnosis to the stage of severe dementia. (75)

X

Illness perception

Brief Illness Perception Questionnaire (IPQ-B) - one item from the Consequence, Personal Control, Illness concern and Emotional representation dimensions (76–78)

X

Interpersonal closeness

Inclusion of other in the self scale (IOS) (79)

X

Locus of control

4-item version of the Locus of Control scale (IE-4) (80)

X

X

X

Mood

2-item Patient Health Questionnaire depression module (PHQ-2) (81)

X

O

X

Personal experiences with dementia

Have you personally experienced a family member or friend having advanced dementia at the end of their life? (82)

X

X

X

Preparedness

Item about preparedness for the end of life of relative (83)

X

Work experience

Specialty, additional palliative training, work setting, years of experience with dementia care (82)

X