Frequently Asked Questions

1. What are the overall study design and goals of the study?

   • The goal of the study is to compare the effectiveness of three dementia care interventions. More information can be found on our About Us page.

2. How has the study sought to include the voices of persons living with dementia and their family caregivers?

   • We were deliberate and thoughtful about the composition of the Local Patient and Stakeholder Committees (LPSCs), including persons with lived experiences with dementia, and continuously solicit feedback from them.

3. How has the study sought to include the voices of minority groups?

   • We have thought about diversity broadly, including rural/urban, demographics and ethnicity, socio-economics, caregiving roles, and more. We are emphasizing non-English language materials for study documents and questionnaires, and are involving community groups in our LPSCs and other advisory roles.

4. What are the outcomes the study measures, and how do they purport to measure outcomes important to various stakeholders?

   • Self/caregiver-reported outcomes will be assessed at baseline and at 3, 6, 12, and 18 months. Baseline measures will be collected in person. Because of the importance of both the patient and caregiver in dementia care, the primary outcome measures will be both the Severity scale of the Neuropsychiatric Inventory Questionnaire (NPI-Q) and the Modified Caregiver Strain Index (MCSI). Secondary outcomes include caregiver unmet needs and confidence, distress in response to dementia-related psychiatric and behavioral symptoms, and depressive symptoms. Tertiary outcomes include cognition and functional status, long-term nursing home placement, goal attainment (a measure developed through a previous PCORI Methodology grant), mortality, PCP and proxy ratings of care and satisfaction, and a new and novel outcome, time spent at home.