Table 2 Overview of patient and informal caregiver assessments at baseline and follow-up

Clinical data

Demographic data

History taking

P

P

P

Cognitive impairment

Mini-mental State Examination

P

P

P

Dementia severity

Clinical Dementia Rating

P

P

P

Functional disability

Disability Assessment for Dementia

P

P

P

Neurological and physical examination

Neurological assessment and evaluation of co-morbidities

P

P

P

Neuropsychiatric problems

Neuropsychiatric Inventory

P

P

P

Depression

Geriatric Depression Scale 15

P

P

P

Cerebral atrophy and white matter lesions

Structural MRI (T1-weighted, T2-weighted and FLAIR)

P

Neuropsychological Assessment

Rey’s Verbal Learning Test, Visual Association Test, Digit-Span, Letter Digit Substitution Test, Stroop Color-Word Test, Trail Making Test

P

P

P

Quality of life data

Patient generic quality of life

EQ-5D

I*/P

I*

I*/P

I*/P

Patient disease specific quality of life*

QoL-AD

I *

I *

I *

I *

Caregiver generic quality of life*

EQ-5D

I

I

I

I

Caregiver disease specific quality of life*

QoL-AD

I

I

I

I

Caregiver burden*

Sense Of Competence

I

I

I

I

Care-related quality of life*

Carer Quality of Life

I

I

I

I

Cost data*

Resource utilization and caregiver time

RUD-Lite

I

I

I

I

Work productivity and absence

Productivity and Disease Questionnaire

I

I

I

I

Consequences of informal caregiving on paid or unpaid work

Health and Labour Questionnaire

I

I

I

I

Other resource use

I

I

I

I

Emerging biomarker data

Functional connectivity

Resting state functional MRI

P

White matter integrity

Diffusion tensor imaging

P

Hippocampal volume

Structural MRI

P

Glucose metabolism

Fluorodeoxyglucose PET†

P

Amyloid plaque deposition

Pittsburgh compound B PET†, CSF Aβ1-42

P

Tau

CSF total tau, CSF phosphorylated tau

P