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Table 1 Flowchart of measures used during the assessments

From: Research protocol of the NeedYD-study (Needs in Young onset Dementia): a prospective cohort study on the needs and course of early onset dementia

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
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
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     
  1. 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