LEAD IT! An App to Enable Persons with Early Stage Dementia to Lead Group Activities for Their Peers - PROJECT SUMMARY
Approximately one million persons with dementia (PWD) reside in long term care (LTC), and this figure is expected to
double over the next 20 years (Gaugler et al., 2019). Dementia is also associated with a variety of responsive behaviors
(Cummings, 1997). Persons with early stage dementia (PESD) also often experience an existential crisis, as they feel a loss
of purpose in life (Cohen & Eisdorfer, 2001). While the remaining strengths of PESD have been known for some time, few
opportunities for meaningful social roles exist. So, there is an urgent need and strong commercialization potential for a
product that enables PESD to serve as group leaders in resident-led activities. Since high-speed internet, tablets, and apps
have become ubiquitous, one promising way to deploy such a product is through a tablet-based app. With this in mind, in a
Phase 1 SBIR, Mr. Skrajner [PI] developed and evaluated an Alpha Version of a tablet-based app called LEAD IT!, which
enables PESD to implement resident-led activities. The Phase 1 project demonstrated that (1) PESD were capable of using
the app to facilitate activities, (2) PWD participating in such activities—i.e., resident-players (RPs)—exhibited high levels
of positive engagement, and (3) both Resident-Leaders (RLs) and RPs reported high satisfaction with the app. The proposed
Phase 2 project will allow us to further develop and evaluate LEAD IT!, as well as an examine the clinical outcomes of
long-term use of the app by both RLs and RPs. The Specific Aims of the proposed Phase 2 project are to: (1) develop
improved Beta 1 (B1) and Beta 2 (B2) Versions of LEAD IT! with sufficient content to facilitate six activities twice per
week for 4.5 months; (2) examine the extent to which RLs are able to serve as leaders while using LEAD IT! (3) examine
the effects of resident-led LEAD IT! programming on RPs; and (4) examine PWD and staff satisfaction with LEAD IT!
To meet these aims, two quasi-experiments will be conducted. Experiment #1, which will test the B1 version of LEAD
IT!, will use a pre-post design. Proximal (immediate) effects will be assessed by examining RP’s levels of engagement/affect
during baseline (standard) activities and again during LEAD IT! activities. We hypothesize that LEAD IT! will result in
higher quality engagement than baseline activities. Experiment #2, which will test the B2 version of the app, will be a cluster
randomized trial (CRT), consisting of pre- and post-intervention measurements of a TREATMENT GROUP (TG)—which
will consist of PWD who receive the intervention – and a CONTROL GROUP (CG) – which will consist of PWD who
receive standard programming / care. Since Experiment #2 will occur after all tweaking of the app is completed, it will
represent the definitive trial of the LEAD IT! app’s impact on PWD. For proximal (immediate) measures, we anticipate
detecting a GROUP x TIME interaction effect, with TG participants exhibiting significantly greater increases in positive
forms of engagement, as compared to CG participants. For distal measures, we anticipate detecting a GROUP x TIME
interaction effect, with TG participants exhibiting significantly greater increases in DEMQOL scores at treatment, as
compared to CG participants. After full development and evaluation of LEAD-IT!, the app will be well-positioned to make
a meaningful difference in the lives of many PWD.