Integration of Health Information Technology and Promotion of Personhood in Family-Centered Dementia Care

Currently, approximately 5.8 million Americans have Alzheimer’s disease and related dementias (ADRD) and
are cared for by 16 million family members, friends or other unpaid caregivers. Communication deficits are
common among persons with ADRD and are due to a variety of symptoms associated with ADRD, including
(but not limited to) various types of primary progressive aphasia, memory loss, word-retrieval anomia, and
decreased attention span. For the persons with ADRD, these deficits can lead to a number of poor outcomes,
such as depression, social isolation, mood and behavioral disturbances, and premature institutionalization.
Communication deficits also pose challenges to caregiving and clinical care, which is already complex. Our
team has previously developed and tested an information technology (IT) intervention, called CareHeroes (CH)
app that assists caregivers with common caregiving challenges and to improve clinical communication
between ADRD caregivers and providers. The team has successfully integrated CH into clinical care at two
memory clinics and have translated CH into Spanish. The proposed project builds on this previous work by
modifying CH to include an Assistive Alternative Communication (AAC) device that relies on touchscreen
technology to increase communication by the persons with ADRD about their daily care preferences,
experiences, and habits. This new interface is customizable and grounded in evidence on AAC and
touchscreen-use by persons with dementia. Essentially, the CH AAC would compensate for the persons’
communication deficits by using photographs, graphics and text to promote engagement of the person with
ADRD, promote personhood, and offer providers access to real-time, tracked behavioral trends that support
early detection, intervention, and monitoring of community dwelling older adults. The study has two Specific
Aims: (1) Develop a novel, electronic AAC interface for an existing IT intervention (CH) that assists the person
with dementia in communicating their daily care preferences with caregivers; and communicate everyday
habits and behaviors (e.g., sleep quality, appetite, daily activities) with providers involved in their care; (2)
Examine the impact and conduct a pilot study that evaluates biopsychosocial outcomes of 120 triads (person
with dementia/ caregivers/providers) utilizing the CH3.0 intervention as an adjunct to care and caregiving for 12
months. Triads will be recruited from two memory clinics (Miami, Alabama) where we have already integrated
the current version of CH into care for use by caregivers and providers. These clinics serve several
disadvantaged ADRD populations (e.g., African American, Hispanic, rural-dwelling). Measures will be
administered at baseline, 6 month, and 12 months and focus on psychosocial and communication/engagement
among members of the triad and we will track all CH3.0 user actions for the 12 month study. The project
design is highly feasible and cost efficient, given that the infrastructure has already been established through
the team’s currently funded (AHRQ R21 HS026571- 9/18- 09/20) study.

Grant Number: 5R01AG068572-05
NIH Institute/Center: NIH
Principal Investigator: ELLEN BROWN