Meaningful Activity Intervention for Individuals With Early-Stage Dementia: Involving the End User in Intervention Design

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Abstract The aim of this NIA Mentored Patient-Oriented Research Career Development Award application is to support my career objective to become an independent clinical investigator specializing in the design and implementation of non-pharmacological interventions for persons with dementia. Throughout the literature, the majority of intervention studies have targeted persons with at least moderate dementia and have not involved the person with dementia in the construction of the intervention(s). In preliminary studies on which I served as a co-investigator, tailored interventions demonstrated beneficial impact on neuropsychiatric symptoms of dementia but did not significantly impact measures of well- being (i.e., depressive symptomatology). Thus, it is important to examine whether intervention implementation at an earlier stage of dementia and greater involvement of persons with dementia in the intervention design lead to better immediate and long-term outcomes. I propose a training plan that will facilitate the development of a protocol for the collaborative creation of a tailored activity plan. This training plan will also allow me to gain the necessary knowledge base to conduct a larger, randomized controlled trial that incorporates neurological biomarkers of dementia. The proposed five-year research plan represents a novel and critical contribution to the field by developing the first service user- led meaningful activity intervention for persons with early-stage dementia. The specific aims of the proposed research are to: (1) identify delivery characteristics of an activity intervention for persons with dementia at the early stage, (2) evaluate the feasibility, acceptability, and initial potential benefits of this protocol, and (3) evaluate the feasibility of the revised protocol and examine its effects on outcomes. An exploratory aim is to evaluate whether the activities are used independently of the intervention (i.e., sustainable). A total of 60 community-dwelling older adults with early dementia (≥60 years) will be recruited to participate in the pilot study. These participants will be drawn from the Johns Hopkins University Maximizing Independence (MIND) at Home study, the Johns Hopkins Bayview Medical Center Memory Clinic, and community-based social agencies such as the Alzheimer’s Association. The expectation is that the findings from this project will ultimately advance the field of dementia care through analysis of the long-term benefits of implementing activities early-on and the benefits to persons with dementia of participating in intervention design.