Integration of Health Information Technology and Promotion of Personhood in Family-Centered Dementia Care
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Neurocognitive Disorders
- Sponsor
- Florida International University
- Enrollment
- 58
- Locations
- 2
- Primary Endpoint
- Change in Quality of Life In Alzheimer's disease- Care Recipient and Caregiver (proxy-interview)
- Status
- Enrolling By Invitation
- Last Updated
- 9 months ago
Overview
Brief Summary
Alzheimer's disease and related dementias (ADRD) are leading causes of disability and often result in communication deficits of the person with dementia (PWD) that can complicate ADRD caregiving and clinical care. The research team will work with stakeholders to develop and design a personalized Assistive and Alternative Communication (AAC) device that relies on information technology (IT) and touchscreens to promote communication and personhood for PWD about their care preferences and experiences. This study will integrate the AAC into an existing health IT intervention that already facilitates clinical communication between caregivers and providers of PWD. A clinical trial will be conducted to evaluate outcomes of 58 dyads (PWD/caregivers) and their health care provider utilizing the My PATI (My Person Assisted Touchscreen Interface)intervention as an adjunct to care and care giving for 6 months.
Detailed Description
The target enrollment for the clinical trial is 58 dyads of caregivers and people with dementia (PWD), where 58 unique dyads of caregivers/PWD will participate. The team plans to enroll a total of 58 dyads across two participating clinical sites. Participants will be randomly assigned to either the full intervention or a control condition for a period of 6 months, where they will be asked to communicate clinical and other relevant information with one another as part of regular caregiving and clinical care activities. Several psychosocial outcome variables for providers, caregivers, and PWD will be assessed. We will compare outcomes based on group assignment and different amounts and patterns of use of the MyPATI (e.g., minimal/non-users versus frequent users). The primary outcome variables are quality of life for caregivers and PWD. The research team will recruit an estimated 15 healthcare providers across both sites at the end of study to assess their experience with My PATI using open and closed ended queries.
Investigators
Eligibility Criteria
Inclusion Criteria
- Not provided
Exclusion Criteria
- Not provided
Outcomes
Primary Outcomes
Change in Quality of Life In Alzheimer's disease- Care Recipient and Caregiver (proxy-interview)
Time Frame: Baseline, 3-months, 6- months
The 13-item QOL-AD scale uses a scale of 1-4 (poor, fair, good, or excellent) to rate a variety of life domains, including the care recipient's physical health, mood, relationships, activities, and ability to complete tasks. The Care Recipient (self-assesses) and caregiver (proxy-interview) complete the QOL-AD.
Change in Perceived Change Index- Caregiver QOL
Time Frame: Baseline, 3-months, 6- months
A 13-item scale that measures caregiver appraisals of self-improvement or decline in distinct areas of well- being. Caregiver indicates whether each item has become worse, stayed the same, or improved in the past month: feeling rested, ability to have time for yourself, and feelings of being upset. The total and subscales (Affect, Somatic, and Ability to Manage)
Secondary Outcomes
- Change in Oberved PHQ-9 Caregiver Interviewed about Care Recipient(Baseline, 6-months)
- Change in PATIENT HEALTH QUESTIONNAIRE (PHQ-9)- Caregiver(Baseline, 3-months, 6- months)
- Change in The Positive Aspects of Caregiving Scale- Caregiver(Baseline, 3-months, 6- months)
- Change in Zarit Caregiver Burden Inventory-22 items (ZBI-22)- Caregiver(Baseline, 3-months, 6-months)
- Change in 12 Item Short-Form Health Survey (SF-12) - Caregiver(Baseline,6-months)
- Change in The Revised Memory and Behavior Problems Checklist - Caregiver interviewed about Care Recipient(Baseline, 6-months)
- Change in Geriatric Depression Scale (GDS-15)- Care Recipient(Baseline, 6-months)
- Change in Partner-Patient Questionnaire for Shared Activities-Caregiver interviewed about relationship with Care Recipient(Baseline, 3 Months, 6 Months)
- Change in Functional Linguistic Communication Inventory (FLCI)- Care Recipient(Baseline)
- My PATI Usage - Links clicked on the app, resources accessed(6 months)
- Provider Interviews(6 months)
- My PATI Usage- Links clicked on the app, resources accessed(6 months)