Table 1 Flowchart of measures used during the assessments

Patient

S

B

F1

F2

F3

F4

Primary outcomes

Needs

CANE [26] (SSI)

P/C

P/C

P/C

P/C

P/C

Frequency and severity neuropsychiatric symptoms

NPI [27]

NPI-NH [28] (SI)

C/N

C/N

C/N

C/N

C/N

Secondary outcomes

Severity of dementia

GDS [31] (RS)

C/P

C/P

C/P

C/P

C/P

Depressive symptoms

CSDD [41] (SI)

C

C

C

C

C

Cognitive functioning

MMSE [33] (CT)

P

P

P

P

P

Cognitive functioning

SIB [34] If MMSE <15 (CT)

P

P

P

P

P

Executive functioning

FAB [36] (CT)

P

P

P

ADL disabilities

IDDD [32] (Q)

C

C

C

Disease awareness

GRAD [37, 38] (SSI)

C/P

C/P

C/P

C/P

C/P

Amount of formal and informal care

RUD-lite [42] (SI)

C

C

C

C

C

Quality of life

QoL-AD [40] (SI/Q)

C/P

C/P

C/P

C/P

C/P

Additional variables

Inclusion/exclusion criteria

R/P/C

Informed Consent

P/C

Demographic data

Age, gender, education level, marital status, employment

P/C

Diagnosis

First complaints, date of diagnosis, physician that gave diagnosis

P/C

Life events

Disease, institutionalization, conflict, divorce, other

P/C

P/C

P/C

P/C

P/C

Medical record investigation

Current diagnosis, possible prior diagnoses, examinations that lead to diagnosis, medical history

R

Treatment and other information

Physical complaints, current treatment/use of formal care, medical history, substance use, dementia/genetic diseases in family

P/C

P/C

P/C

P/C

P/C

Caregiver

Primary outcomes

Needs

CANE [26] (SSI)

C

C

C

C

C

Experienced burden as a result of behavioral disturbances

NPI [27] (SI)

C/N

C/N

C/N

C/N

C/N

Needs and experiences

(SSI)

C

C

C

Sense of competence

SSCQ [43] (SI)

C

C

C

C

C

Secondary outcomes

Depressive symptoms

MADRS [44]. (SI)

C

C

C

Psychological and somatic complaints

SCL-90 [45] (Q)

C

C

C

C

C

Coping strategies

UCL (Schreurs, Willige et al. 1988) (Q)

C

Quality of life

RAND-36 [48] (Q)

C

C

C

Quality of the marital relationship

Four items of the University of Southern California Longitudinal Study of Three-Generation Families measures of positive affect [50]. (Q)

C

C

C

C

C

Emotional instability

Subscale neuroticism of NEO-FF-I [52] (Q)

C

Caregiver management strategy

Caregiver management strategy [15] (SI)

C

C

C

C

C

Additional variables

In/exclusion criteria

C

Informed consent

C

Demographic data

Age, gender, education level, marital status, employment

C

Information on informal care

hours giving care, contact hours, other informal caregivers

C

C

C

C

C

Information on employment

Hours working, date stopped working

C

C

C

C

C

Children

Needs and experiences

(SSI)

Ch

Demographic data

Age, gender, education level, employment, living situation

Ch

Data on informal care

Hours spent care giving, contact hours with demented parent

Ch