Comparison of Unmet Care Needs across The Dementia Trajectory: Findings from The Maximizing Independence at Home Study

Introduction: The aging of the population will bring with it an increase in the number of individuals with dementia living in the community. This will result in a greater demand on family caregivers and the long term care system to deliver care that is consistent with patient needs across the dementia trajectory, and requires a thorough understanding of an individual’s care needs as they change over the disease course. This study compares the unmet care needs of community dwelling persons with dementia across the stages of the dementia. Methods: Cross sectional analyses were conducted using in-home assessment data collected from 254 community residing persons with dementia and their informal caregivers. Results and Discussion: Most unmet needs for patients in the early stage of disease were in the domains of safety and basic education about disease processes. Patients with moderate stage disease had the highest level of unmet needs in the domains of supervised daytime activities and caregiver’s management of neuropsychiatric behaviors. Individuals with severe or end stage disease had the highest level of unmet needs in the domain of emotional distress and the caregiver’s need for caregiver emotional support and respite. Reasons for unmet needs may be a consequence of a lack of knowledge about the disease process and a lack of psychosocial support resources. At all levels were evolving needs for information on the changing disease course and the need for meaningful activities. These results provide a basic overview of unmet needs by disease stage from which to build palliative care interventions for persons with dementia living at home and their family caregivers.