Utilizing Palliative Leaders In Facilities to Transform Care for Alzheimer's Disease (NCT04520698) | Clinical Trial Compass
CompletedNot Applicable
Utilizing Palliative Leaders In Facilities to Transform Care for Alzheimer's Disease
United States1,322 participantsStarted 2021-09-08
Plain-language summary
The purpose of this study is to evaluate a comprehensive model for integrating both primary and specialty Palliative Care for older adults with dementia into nursing facilities. Palliative Care is a supportive care approach that aims to improve the quality of life of patients and their families facing serious or life-threatening illnesses, through the prevention and relief of suffering through the treatment of pain and other problems, using physical, psychosocial and spiritual approaches. Palliative care is specialized medical care for people who are living with a serious illness. This type of care is focused on providing relief from the symptoms and from the stress of the illness. The goal is to improve quality of life for both patient and family.
The UPLIFT-AD model will include providing education on primary Palliative Care for residents with dementia to nursing facility staff, training nursing facility staff in providing primary Palliative Care, and providing access to specialty Palliative Care consultations for residents. To help understand the impact of these interventions, this study will also collect information about resident health, the care they receive, and perceptions of their quality of life according to both family members and nursing facility staff.
Who can participate
Age range
18 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
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NURSING HOME RESIDENTS:
* Long-stay resident in an enrolled nursing home defined as not paying through Medicare Part A at the enrolled facility.
* Has a diagnosis of moderate to severe ADRD, as measured on the Minimum Data Set (MDS)
* Length of stay \>30 days
FAMILY MEMBERS/SURROGATE DECISION MAKERS:
* Family member and/or surrogate decision maker for an eligible resident in an enrolled nursing home
* English-speaking
NURSING HOME STAFF:
* Staff, nurse, or nurse assistant in an enrolled nursing facility
* English-speaking
Exclusion Criteria:
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NURSING HOME RESIDENTS:
• Short-stay resident, defined as paying through Medicare Part A at the enrolled facility and/or receiving respite care
FAMILY MEMBERS/SURROGATE DECISION MAKERS:
• Non-English-speaking
NURSING FACILITY STAFF:
• Non-English-speaking
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1This trial looked at comfort care for people with Alzheimer's disease at the end of life — can you explain what the EOLD-CAD scale measures and what it might tell us about whether my loved one is experiencing distress or discomfort?
2Since this trial is already completed, has any of the data been published yet, and if so, what did it show about whether having palliative care leaders in nursing facilities actually improved comfort for residents with dementia?
3The study was done in care facilities — if my loved one is currently at home or in a facility that didn't participate, is there a way to access the kind of palliative care approach this trial was testing?
4This trial focused on palliative and comfort-oriented care rather than trying to slow or reverse Alzheimer's — how do I know when it might be the right time to shift our focus from disease-directed treatment toward this kind of comfort-centered approach?
5Are there palliative care specialists or dementia care teams at our facility or hospital who already use approaches like the ones studied in this trial, so we don't necessarily need to wait for a new study to access this type of care?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Change in End-of-Life Dementia - Comfort Assessment In Dying scale (EOLD-CAD)
Timeframe: Baseline (prior to intervention) and12 months (post intervention implementation)