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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
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     
  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