Outcome measure | Operationalization (Type of instrument) | Time of assessment | |||||
---|---|---|---|---|---|---|---|
Patient | Â | S | B | F1 | F2 | F3 | F4 |
Primary outcomes | Â | Â | Â | Â | Â | Â | Â |
Needs | CANE [26] (SSI) | Â | P/C | P/C | P/C | P/C | P/C |
Frequency and severity neuropsychiatric symptoms | NPI [27] NPI-NH [28] (SI) | Â | C/N | C/N | C/N | C/N | C/N |
Secondary outcomes | Â | Â | Â | Â | Â | Â | Â |
Severity of dementia | GDS [31] (RS) | Â | C/P | C/P | C/P | C/P | C/P |
Depressive symptoms | CSDD [41] (SI) | Â | C | C | C | C | C |
Cognitive functioning | MMSE [33] (CT) | Â | P | P | P | P | P |
Cognitive functioning | SIB [34] If MMSE <15 (CT) | Â | P | P | P | P | P |
Executive functioning | FAB [36] (CT) | Â | P | Â | P | Â | P |
ADL disabilities | IDDD [32] (Q) | Â | C | Â | C | Â | C |
Disease awareness | Â | C/P | C/P | C/P | C/P | C/P | |
Amount of formal and informal care | RUD-lite [42] (SI) | Â | C | C | C | C | C |
Quality of life | QoL-AD [40] (SI/Q) | Â | C/P | C/P | C/P | C/P | C/P |
Additional variables | Â | Â | Â | Â | Â | Â | Â |
Inclusion/exclusion criteria | Â | R/P/C | Â | Â | Â | Â | Â |
Informed Consent | Â | P/C | Â | Â | Â | Â | Â |
Demographic data | Age, gender, education level, marital status, employment | Â | P/C | Â | Â | Â | Â |
Diagnosis | First complaints, date of diagnosis, physician that gave diagnosis | Â | P/C | Â | Â | Â | Â |
Life events | Disease, institutionalization, conflict, divorce, other | Â | 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 | Â | R | Â | Â | Â | Â |
Treatment and other information | Physical complaints, current treatment/use of formal care, medical history, substance use, dementia/genetic diseases in family | Â | P/C | P/C | P/C | P/C | P/C |
Caregiver | Â | Â | Â | Â | Â | Â | Â |
Primary outcomes | Â | Â | Â | Â | Â | Â | Â |
Needs | CANE [26] (SSI) | Â | C | C | C | C | C |
Experienced burden as a result of behavioral disturbances | NPI [27] (SI) | Â | C/N | C/N | C/N | C/N | C/N |
Needs and experiences | (SSI) | Â | C | Â | C | Â | C |
Sense of competence | SSCQ [43] (SI) | Â | C | C | C | C | C |
Secondary outcomes | Â | Â | Â | Â | Â | Â | Â |
Depressive symptoms | MADRS [44]. (SI) | Â | C | Â | C | Â | C |
Psychological and somatic complaints | SCL-90 [45] (Q) | Â | C | C | C | C | C |
Coping strategies | UCL (Schreurs, Willige et al. 1988) (Q) | Â | C | Â | Â | Â | Â |
Quality of life | RAND-36 [48] (Q) | Â | C | Â | C | Â | 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) | Â | C | C | C | C | C |
Emotional instability | Subscale neuroticism of NEO-FF-I [52] (Q) | Â | C | Â | Â | Â | Â |
Caregiver management strategy | Caregiver management strategy [15] (SI) | Â | C | C | C | C | C |
Additional variables | Â | Â | Â | Â | Â | Â | Â |
In/exclusion criteria | Â | C | Â | Â | Â | Â | Â |
Informed consent | Â | C | Â | Â | Â | Â | Â |
Demographic data | Age, gender, education level, marital status, employment | Â | C | Â | Â | Â | Â |
Information on informal care | hours giving care, contact hours, other informal caregivers | Â | C | C | C | C | C |
Information on employment | Hours working, date stopped working | Â | C | C | C | C | C |
Children | Â | Â | Â | Â | Â | Â | Â |
Needs and experiences | (SSI) | Â | Ch | Â | Â | Â | Â |
Demographic data | Age, gender, education level, employment, living situation | Â | Ch | Â | Â | Â | Â |
Data on informal care | Hours spent care giving, contact hours with demented parent | Â | Ch | Â | Â | Â | Â |