Table 1.
Flowchart of measures used during the assessments
| Outcome measure | Operationalization (Type of instrument) |
Time of assessment | |||||
|---|---|---|---|---|---|---|---|
| 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 | |||||
S = Screening, B = Baseline, F1 = Follow up measurement 1, F2 = Follow up measurement 2, F3 = Follow up measurement 3, F4 = Follow up measurement, SSI = Semi Structured Interview, SI = Structured Interview, CT = Cognitive Test, Q = Questionnaire, RS = Rating Scale, C = informant is caregiver, P = Informant is patient, N = Informant is health care professional from nursing home, Ch = informant is child