Understanding the complex and progressive care needs of older adults with cognitive disorders to provide timely and personalized care delivery

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.