LEAD IT! An App to Enable Persons with Early Stage Dementia to Lead Group Activities for Their Peers

Hearthstone Alzheimer Care, Ltd, Woburn MA

Investigators

Abstract

Project Summary/Abstract Behavioral disturbances are consistently reported to be among the most stressful aspects of providing care to persons with dementia (PWD). PWD also often undergo an existential crisis, especially in the early stages, as they feel a loss of purpose in life. This is unfortunate, because many skills remain, especially for persons in the early stages of dementia (PESD). Also, many PESD maintain a desire to be altruistic. While the remaining strengths of PESD have been known for some time, few opportunities for meaningful social roles exist, so there is a need to create interventions that enable PESD to fill such roles. Since many PESD reside in long term care (LTC), the role of group activity leader would be a natural starting point for a social role. To this end, Mr. Skrajner [PI] managed two studies in which PESD served as group activity leaders for other PWD. These studies demonstrated that (1) PESD can successfully serve as activity leaders if appropriate materials/processes are used; (2) resident-led programming produced higher levels of positive engagement and lower levels of negative engagement than staff-led activities; in other words, PESD were more effective than staff; (3) minimal ?training? is needed for the resident-leaders and all training must occur ?on the floor?; (4) leaders found the roles meaningful; and (5) challenging behaviors were reduced in some leaders. It should be noted that resident-led activities materials were hard-copy in nature, and the program was never commercialized or disseminated on a large scale. Given the success of resident-led programming, the increased prevalence of dementia, and the push for early detection of dementia, there is an urgent need and strong commercialization potential for a product that enables PESD to serve as group leaders in resident-led activities. Therefore, the overall objective of this project is to develop and evaluate a tablet-based app called LEAD IT!, which will enable PESD to implement resident-led programming. The Specific Aims of the proposed project are to (1) develop an Alpha Version of LEAD IT! with sufficient content to facilitate LEAD IT! twice per week for six weeks; (2) examine the extent to which Resident-Leaders (RLs) are able to serve as activity leaders while using LEAD IT! and (3) examine the effects of resident-led LEAD IT! programming on Player-Participants. The proximal (immediate) effects of LEAD IT! The Phase 1 project will lay the groundwork for a Phase 2 project in which: (1) an improved LEAD IT! app will be created based upon lessons learned in Phase 1, (2) three additional LEAD IT! activity types will be created; (3) additional content for all activities will be created; (i.e., sufficient content for four months); and (4) researchers will examine the effects of implementing resident-led programming over a longer time.