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INTRODUCTION: Reliable estimates of time from diagnosis until institutionalization and death in people with dementia from routine nationally representative databases are lacking.METHODS: We selected 9230 people with dementia and 24,624 matched controls from family physicians' electronic records linked with national administrative databases to analyze time until institutionalization and death and associated factors.RESULTS: Median time from recorded diagnosis until institutionalization and until death for people with dementia was 3.9 and 5.0 years, respectively, which was considerably shorter than for controls. Once institutionalized, median time to death was longer for persons with dementia (2.5 years) than for controls (1.2 years). Older age and receiving home care were the strongest predictors of shorter time until institutionalization and death in people with dementia. Gender, cohabitation, migration status, frailty, polypharmacy, and dementia medication were other significant factors.DISCUSSION: The estimates could help to inform patients, their families, and policymakers about probable trajectories.

IntroductionThe ROADMAP project aimed to provide an integrated overview of European real‐world data on Alzheimer's disease (AD) across the disease spectrum.MethodsMetadata were identified from data sources in catalogs of European AD projects. Priority outcomes for different stakeholders were identified through systematic literature review, patient and public consultations, and stakeholder surveys.ResultsInformation about 66 data sources and 13 outcome domains were integrated into a Data Cube. Gap analysis identified cognitive ability, functional ability/independence, behavioral/neuropsychiatric symptoms, treatment, comorbidities, and mortality as the outcomes collected most. Data were most lacking in caregiver‐related outcomes. In general, electronic health records covered a broader, less detailed data spectrum than research cohorts.DiscussionThis integrated real‐world AD data overview provides an intuitive visual model that facilitates initial assessment and identification of gaps in relevant outcomes data to inform future prospective data collection and matching of data sources and outcomes against research protocols.

Alzheimer’s disease (AD) has a long disease duration and a progressive course. To stop or slow down cognitive decline as early as possible, intervention studies are increasingly focusing on the earliest stage of the disease. To evaluate the effectiveness of these interventions, one ideally would want to track patients from the earliest preclinical stage, where amyloid pathology exists but cognition is still intact, to the prodromal stage, where cognitive functioning is impaired, to later and increasingly severe stages of dementia. An alternative strategy is to re-use and combine data that were previously collected. Combining different data sources can improve generalizability of findings, efficiency of future clinical trials, and identification of persons best suited for treatment at different disease stages. The aim of this thesis was to examine relevant outcomes and endpoints related to amyloid pathology in pre-dementia stages, and to examine the disease trajectory and care duration after a dementia diagnosis. In this thesis, we used different data sources and data types ranging from biomarker data to registry data to examine relevant outcomes and endpoints in AD. The relevant outcomes and endpoints in this thesis are important for the monitoring of treatment effects and for personalized predictions of whether and how a patient might advance on the AD disease spectrum. Part I focuses on preclinical and prodromal stages of AD, and Part II focuses on the disease trajectory and duration of different types of care after a dementia diagnosis.

Introduction: Clinical trials involving patients with Alzheimer’s disease (AD) continue to try to identify disease-modifying treatments. Although trials are designed to meet regulatory and registration requirements, many do not measure outcomes of the disease most relevant to key stakeholders. Methods: A systematic review sought research that elicited information from people with AD, their caregivers, and health-care professionals on which outcomes of the disease were important. Studies published in any language between 2008 and 2017 were included. Results: Participants in 34 studies described 32 outcomes of AD. These included clinical (memory, mental health), practical (ability to undertake activities of daily living, access to health information), and personal (desire for patient autonomy, maintenance of identity) outcomes of the disease. Discussion: Evidence elicited directly from the people most affected by AD reveals a range of disease outcomes that are relevant to them but are not commonly captured in clinical trials of new treatments.

OBJECTIVES: To estimate (1) the duration of no formal care, home care, and institutional care after dementia diagnosis, and (2) the effect of age, sex, living situation, dementia medication, migration background, and income on this dementia care duration.DESIGN: Longitudinal retrospective study using routinely recorded general practice electronic health records linked with population-based healthcare and mortality data.SETTING AND PARTICIPANTS: In total, 11,012 community-dwelling persons who received an incident dementia diagnosis and were listed in a Dutch general practitioner database from 448 general practices in the Netherlands.METHODS: Using multistate modeling analyses, we estimated the mean duration of care types (no/home/institutional care) for different ages based on simulations of transition rates and examined the influence of demographic and clinical factors on these durations.RESULTS: From dementia diagnosis onward in 85-year-old men, the mean duration without formal care was 0.7 years, of home care 1.7, and institutional care 1.1 years. In 85-year-old women, the duration without formal care was 0.8 years, of home care 2.3, and institutional care 2.3 years. Total care duration was 3.5 years in 85-year-old men and 5.4 years in 85-year-old women. In men, the duration of home care was longer compared with no formal care and institutional care. The duration of no formal care was longer in persons not living alone, without prescribed dementia medication, with a non‒Western migration background, or with a higher income. The duration of home or institutional care was longer in women, persons without polypharmacy, in those living alone, or those with a Western background.CONCLUSIONS AND IMPLICATIONS: Our findings help to increase understanding of long-term dementia care trajectories and show that demographic and clinical factors determine the duration of care types. Our results can contribute to the organization of healthcare resource planning and monitoring of the effects of healthcare policy and interventions.