Formal and informal care use before, during, and after detection of cognitive impairment and dementia: A

Sakura Sakakibara1, Abigail Dove1, Jie Guo1

  • 1Aging Research Center, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.

BackgroundDementia is linked to increased care use, but formal and informal care use throughout the dementia journey remains unclear.ObjectiveTo investigate care use before and after the detection of cognitive impairment, no dementia (CIND) and dementia and to identify care-related factors.MethodsWithin a population-based study, we matched older adults (≥78 years) who developed CIND (n = 244) and dementia (n = 175) with cognitively intact participants to form CIND/intact (n = 732) and dementia/intact (n = 525) samples. Dementia was clinically diagnosed and CIND was determined through a neuropsychological battery. Formal (from public and private providers) and informal (provided by family and friends) care use was interviewed. Care-related factors included age, sex, education, living alone, chronic diseases, and social network. Data was analyzed using logistic regressions and linear mixed-effect models.ResultsCompared to cognitively intact participants, those with CIND had increased care use 3 years after detection (odds ratio [OR] 2.30 and 2.63, 95% confidence interval [95%CI] 1.02-5.18 and 1.25-5.53) and those with dementia had greater care use over time (OR 2.01, 95% CI 1.20-3.38 to OR 13.58, 95% CI 4.46-41.34). People with CIND/dementia showed 6.3 to 32.3 h rapid increase in informal care hours. Older age, female, living alone, and chronic diseases further increased care use.ConclusionsFormal and informal care use during the progression of cognitive impairment begins to increase at the CIND stage, but only informal care hours continue to increase. The findings highlight the complex care needs of people with cognitive impairment and the importance of coordination of care.

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