# A video intervention to improve decision making in early-onset dementia caregivers

> **NIH NIH R01** · MASSACHUSETTS GENERAL HOSPITAL · 2020 · $589,750

## Abstract

Young-onset (age < 65) dementias, especially the Frontotemporal Dementia and young-onset
Alzheimer's disease, are a group of AD related dementias (ADRD) that are often rapidly
progressive. These dementias also have a high morbidity and mortality rate (average survival is
7 years) and exceptionally high caregiving demands. Caregivers of patients with these diseases
have unique needs since these dementias have a shorter period of time from diagnosis to
before patients lose decision-making capacity, and they occur in patients who are typically
younger and have usually not had end-of-life conversations with their caregivers. Caregivers of
these patients often suffer a great deal of distress attempting to develop a comprehensive care
plan for the advanced stages of dementia. Medical decision-making needs for patients and
caregivers with young-onset dementia are complex, since many people living with these
illnesses have not yet engaged in discussions about end-of-life care, many patients may not
have expressed their preferences before they lose decision-making capacity, and caregivers are
often unfamiliar with the stages of dementia and the different medical decisions required in each
stage. Furthermore, discussions between clinicians and caregivers about medical care is often
inadequate; traditional discussions rely on ad hoc verbal descriptions of hypothetical health
states (advanced dementia) and treatments (CPR, intubation, feeding tubes). This approach is
limited because these scenarios are hard for caregivers to envision, information is inconsistent,
and verbal explanations are hindered by literacy barriers. To address these shortcomings, we
have developed video decision aids for this population. We have shown the efficacy of these
decision aids in healthy adults making hypothetical decisions, but not in caregivers of people
with young-onset dementia. The overall objectives of this proposal is to collect additional data
on caregiver views regarding informational needs, to refine these tools for the needs of
caregivers of patients in the different stages of dementia (mild, moderate, severe), to create a
user-manual to train community-based clinicians on the skills required to carry out this facet of
care, and to conduct a randomized controlled trial of the decision aid (vs. enhanced usual care)
in 150 caregivers. This study meets the specific requests of RFA-AG-18-030 by: 1. refining an
existing intervention and pilot-testing the tool; 2. elucidating the underlying principle of the
intervention; and, 3. creating a user-friendly, easily delivered intervention to train clinical care
providers in the community. This proposal is designed to improve decision making for
caregivers of patients with ADRD and lays the groundwork for a pragmatic trial of a caregiving
intervention by supporting an early-Stage (Stage 1) behavioral intervention.

## Key facts

- **NIH application ID:** 9965711
- **Project number:** 5R01AG061968-03
- **Recipient organization:** MASSACHUSETTS GENERAL HOSPITAL
- **Principal Investigator:** BRADFORD C DICKERSON
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $589,750
- **Award type:** 5
- **Project period:** 2018-09-30 → 2023-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9965711

## Citation

> US National Institutes of Health, RePORTER application 9965711, A video intervention to improve decision making in early-onset dementia caregivers (5R01AG061968-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9965711. Licensed CC0.

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