Advance care planning for older adults with Down syndrome and early dementia
Official title: Advance Care Planning for Older Individuals with Down Syndrome Experiencing Early Onset and Accelerated Dementia: A Mechanistic Evaluation
Funded at Brigham and Women's Hospital · NIH-11422946 · Data updated 2026-11-12
This grant tests how to prepare people with Down syndrome and their caregivers for serious illness and end-of-life care when dementia starts early.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Brigham and Women's Hospital NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project start | September 1, 2026 |
| Project end | August 31, 2031 |
| Funding year | 2026 |
| Award (this year) | $889,734 |
| NIH project number | 1R01AG102399-01 |
| Project ID | NIH-11422946 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adults with Down syndrome aged 21 and older who are at risk for or experiencing early-onset and accelerated dementia and their caregivers.
✕Less likely to help
Individuals without Down syndrome or without dementia or end-of-life care planning needs are unlikely to directly benefit.
What this research studies
Older adults with Down syndrome are at high risk for early and rapid dementia, and there are no standard ways to prepare them and their families for end-of-life care. The project will adapt and apply the Serious Illness Care Program to this population, including a structured conversation guide and clinician training. Researchers will work with patients, families, and healthcare teams to facilitate timely, person-centered goals-of-care conversations. The goal is to improve decision-making, reduce caregiver stress, and support better quality of life as dementia progresses.
Why it matters
Potential benefit: If successful, patients and their caregivers could experience clearer conversations, better alignment of care with values, and earlier access to appropriate support during dementia progression.
How similar studies have gone: Evidence from related settings shows the Serious Illness Care Program improves timing of conversations and patient experiences, suggesting potential for benefit in this group.
Where this research is happening
-
Brigham and Women's Hospital
Boston, United States Active
Researchers
- Principal investigator: Ouchi, Kei — Brigham and Women's Hospital
- Study coordinator: Ouchi, Kei
Related research
Other NIH-funded projects on the same topics.
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Molecular glue degraders that target APP to help prevent and treat Down syndrome-related dementia
A new approach aims to use specialized molecules to lower APP protein and reduce brain dementia risk in people with Down syndrome.
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Understanding cognitive variability in adults with Down syndrome and its link to Alzheimer’s disease biomarkers
A study of adults with Down syndrome to see if everyday ups and downs in thinking tests can predict Alzheimer’s-related changes and dementia using blood and brain biomarkers.
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Thinking variability and Alzheimer's markers in adults with Down syndrome
This project looks at whether ups-and-downs in thinking tests can signal early Alzheimer's in adults with Down syndrome.
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Understanding dementia in adults with Down syndrome
A study with adults who have Down syndrome will explore why cognitive decline and dementia occur, using advanced brain analyses to identify key pathways and potential treatment targets.
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Protein balance problems and Alzheimer's-like dementia in Down syndrome
This project asks whether disrupted protein management in the brain leads to Alzheimer's-like dementia in people with Down syndrome.
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Investigating how protein regulation affects Alzheimer's-like symptoms in Down syndrome
This study is looking at how certain proteins in the brain might be linked to Alzheimer's-like changes in people with Down syndrome, and it hopes to find ways to help keep their brains healthier.
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.