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.

Public Health Relevance

It is imperative to develop scalable and effective approaches to supporting advance care planning for persons with early-onset dementias and their caregivers. By evaluating video education tools to better inform persons making decisions about advance care planning and offering evidence-based options for medical care, there is an opportunity to develop evidence regarding improvements in quality of life throughout the care trajectory.

National Institute of Health (NIH)
National Institute on Aging (NIA)
Research Project (R01)
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Special Emphasis Panel (ZAG1)
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Onken, Lisa
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Massachusetts General Hospital
United States
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