Laura Fratiglioni

Research problem and questions. Even if dementia cannot be cured, older persons with this condition and their relatives can still have a long-lasting good quality of life if offered appropriate medical and social care. As recently discussed in a FORTE-funded national symposium organized by the main applicant, the integrated person-centered model is recognized as a promising approach for improved health and service utilization outcomes, but questions remain about how to organize, provide, and assess such care. This project intends to answer the following questions concerning older adults with dementia: 1) How can we ensure a person-centered and holistic assessment and follow up? 2) What are the predictors and clinical/care consequences of major acute events? and 3) How can we facilitate their seamless transfer across care settings?Data and methods. Three studies will be implemented. Study 1 will leverage on data from an existing, multi-center, population-based cohort (Swedish National Study on Aging and Care, SNAC) to examine the predictive capacity of the Health Assessment Tool (HAT) for detecting progression from cognitive impairment to dementia. Study 2 will explore, based on data from the Swedish Dementia Registry, the predictors of common major acute events (i.e. falls, pneumonia, myocardial infarction) and how the latter impact dementia progression and health/social care use, including unplanned hospitalizations. Finally, Study 3 will identify and map care transitions within and between medical and social care settings using an integrated national register dataset, with special emphasis on the rehabilitation and hospital discharge phases of care trajectories.Relevance and utilization. The present project is a contribution to the long-awaited need for integrated person-centered care throughout the dementia continuum, which will add quality to the many years older persons may live with cognitive impairment and dementia by slowing down their progression.Plan for project realization. We will draw on our team’s longstanding multidisciplinary expertise on aging and dementia research, already established collaborations, the involvement of key partners representing the councils of Elderly Research and Cognitive Disorders at the National Board of Health and Welfare, and the ease of access to the proposed longitudinal databases and register data. This will facilitate, not only the feasibility of the project, but also the timely implementation of its findings.

With this application, we seek support to consolidate and expand the National E-infrastructure for Aging Research (NEAR) after the building phase, supported by the VR-grant for national infrastructures (2018-22). NEAR’s purpose is to empower aging research in Sweden by providing substantial added value to the field: a broad, multidisciplinary research perspective that cannot be achieved with the individual databases

increased sample size and variation, which enhance representativeness and generalizability

and a critical mass of data that opens new research avenues and supports innovation. The ultimate goal is to contribute to identifying sustainable intervention strategies for better health and care for older people. During the first 3 years, we have followed the original plan with only marginal deviations: the Consortium of 8 Swedish universities, where the 15 local databases are located, has been established, NEAR fundaments are in place and initial use of NEAR was started with 8 ongoing projects (www.near-aging.se). NEAR-Phase 2 (2023-28) will be implemented by means of 9 modules: 1) organizing and governing, 2) completing the technical platform, 3) updating the documentation, 4) continuing data harmonization, 5) increasing visibility and user numbers, 6) enriching the local databases, 7) including new databases and registries, 8) supporting users & knowledge advancement, and 9) fulfilling knowledge gaps and developing new methods. The availability of such a large collection of social, biological and medical data, and the scientific excellence of the NEAR founders, will reinforce the international profile of Swedish aging research, promote new collaborations and support the development of a new generation of well-qualified researchers. Ultimately, NEAR will contribute to societal development by providing a platform for researchers, companies and non-profit organizations to improve public health and health care in a field that requires urgent innovation.

Dementia is one of the major causes of disability and dependence and its impact on healthcare systems leads to an enormous burden on our current and future society. The goal of this project is to provide evidence supporting timely and personalized care for people with cognitive disorders (mild cognitive impairment [MCI] and dementia). Specifically, we aim to 1) Explore care needs and care utilization in people with MCI and dementia and capture their changes depending on disease progression, comorbidities, and social context, 2) Compare dementia cases diagnosed at specialized settings with undiagnosed cases (identified in population-based cohort studies) to detect potentially different care trajectories, 3) Map the 30-year secular trend of care use and institutionalization in people with dementia from the 1990s to 2020s in Sweden (urban and rural areas), and 4) Develop a predictive model to provide an updated estimate of the number of people with MCI and dementia given decreasing dementia incidence and increasing survival, and to identify who will need home assistance or institutionalization and when. To address these aims, we rely on the expertise of a multidisciplinary team, and high-quality data from three population-based cohorts studies and a national quality registry: the Kungsholmen Project (KP, n=1810 aged ≥75, 1987-2000), the Swedish National Study on Aging and Care in Kungsholmen (SNAC-K, n=3363 aged ≥60, 2001-2021) and Nordanstig (SNAC-N, n=766 aged ≥60, 2001-2021), and the Swedish Dementia Registry (SveDem, n=100133, 2007-2021). In these datasets, MCI and dementia were diagnosed using standard criteria, and data on the quantity and quality of formal (home and institution) and informal care were collected. Information on contextual factors and medical conditions is available. Findings from this project will provide practical information for healthcare managers to plan and deliver tailored and stage-specific care to people with cognitive disorders.

This project aims at increasing our knowledge concerning care needs and patterns of care utilization of frail and clinically complex older adults, to identify timely actions towards a more proactive and integrated healthcare. An increased rate of transition of frail individuals between healthcare (primary care, hospital) and social care providers (home care services, institutions) has been observed but not well characterized. At the same time, fragmented and idiosyncratic care transitions are arguably responsible for a quicker functional decline, which accelerates frailty development. Finally, patients’ perspective and experiences have been rarely taken into consideration when designing care paths, especially when frailty is at play. Taking advantage of three well-characterized Swedish population-based studies part of the Swedish National Study on Aging and Care (SNAC), and of the National E-Infrastructure on Aging Research (NEAR) we will analyze data of over 7,000 individuals 60+, living in both urbanized and rural areas of four different Regions. We plan to develop three interconnected subprojects having the following aims: 1) To characterize seniors’ care transition patterns while considering their underlying clinical conditions, frailty, and the availability of formal and informal social care

2) To quantify the impact of unplanned and avoidable healthcare episodes, and the fast transition through different care settings, on the clinical trajectories and frailty

and 3) To better understand patients’ experiences and preferences in relation to their history of healthcare utilization and care transition episodes, while considering their clinical and frailty trajectories. Through this project, we expect to identify relevant risk profiles and harmful care utilization patterns as a basis for more integrated and person-centered care, which hopefully will delay or postpone frailty, reduce morbidity burden, and improve patients’ experiences and quality of life.