# Measuring Symptom Clusters in People with Sudden-Onset Disabilities

> **NIH NIH R01** · UNIVERSITY OF DELAWARE · 2024 · $648,764

## Abstract

Every year 400,000 people with Alzheimer’s disease and related dementias (ADRD) are hospitalized, transfer to a skilled nursing facility (SNF), and transition to home, assisted living, or long term care. After discharge, one in five patients are re-hospitalized within 30 days, and their caregivers experience high levels of strain and psychological harm. To promote effective transitions from SNF to home and other destinations, we designed the Connect-Home ADRD transitional care intervention (C-H ADRD), an adaptation of Connect-Home transitional care. Our recent trial of Connect-Home generated evidence for intervention efficacy in a population of 327 patient and caregiver dyads. In a supplemental award, we identified unique needs of SNF patients with ADRD and their caregivers. We designed the C-H ADRD intervention to address those needs: (1) before discharge, SNF staff develop an ADRD transition plan with patient and caregiver dyads and (2) after discharge, a Dementia Caregiving Specialist provides phone-based support for the ADRD transition plan. In a pilot study, we demonstrated C-H ADRD’s feasibility, acceptability, and potential to reduce caregiver strain and patient neuropsychiatric symptoms (NPS). The next logical step is an efficacy test of C-H ADRD. Our Objective is to conduct a parallel arms, cluster randomized trial (CRT) of C-H ADRD, enrolling 360 ADRD patient and caregiver dyads in 12 SNFs. The Specific Aims are: 
Aim 1: Conduct an efficacy CRT of C-H ADRD (intervention) vs. usual discharge planning (control) and compare caregiver outcomes 30 days after discharge: (1) caregiver strain (primary) and (2) depression and preparedness for care transitions (secondary). 
Aim 2: Compare patient outcomes between intervention and control arms 30 days after discharge: (1) patient NPS (primary) and (2) quality of life and acute care use (secondary). Exploratory: Examine whether caregiver strain modifies intervention effect on patient outcomes.
Aim 3: Examine potential variability in Connect-Home ADRD outcomes and implementation. (3a) Determine intervention impact by patient discharge destination and other factors for caregiver and patient outcomes. (3b) Identify factors at the dyad-level (e.g., patient discharge destination) and SNF-level (e.g., quality rating) contributing to fidelity to the C-H ADRD protocol.
IMPACT: C-H ADRD has potential to improve health outcomes of people with ADRD and their caregivers.

## Key facts

- **NIH application ID:** 10656589
- **Project number:** 5R01NR018684-05
- **Recipient organization:** UNIVERSITY OF DELAWARE
- **Principal Investigator:** David Scott Tulsky
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $648,764
- **Award type:** 5
- **Project period:** 2019-09-05 → 2025-09-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10656589

## Citation

> US National Institutes of Health, RePORTER application 10656589, Measuring Symptom Clusters in People with Sudden-Onset Disabilities (5R01NR018684-05). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10656589. Licensed CC0.

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