Palliative Care Education in Assisted Living for Dementia Care Providers (PCEAL-DCP) (PCEAL-DCP)

Preparing Assisted Living Staff to Provider Palliative Care to Residents With Dementia: Palliative Care Education in Assisted Living for Dementia Care Providers (PCEAL-DCP)

The palliative care education in assisted living for dementia care providers (PCEAL-DCP) is a 4-week intervention (once a week for 1.5 hours, a total of 6 hours) for licensed nurses, administrators and dementia care coordinators to improve quality of dementia care outcomes

Study Overview

• Status: Recruiting
• Conditions: Alzheimer Disease; Caregiver Burden; Patient Participation; Self Efficacy; End of Life; Caregiver Burnout
• Intervention / Treatment: Behavioral: Palliative Care Training

Detailed Description

This is a five-year cluster randomized trial (CRT) among 30 assisted living (AL) communities (k=30) and residents (N=450), staff (N=72) and family members (N=270) with a baseline, 3, and 6 months post-intervention follow-ups for residents, a baseline and 6-month follow-up for family and a pre- and post-test (one month), 3- and 6-month follow-up for staff and baseline AL facility information from administrators to examine dementia care outcomes.

• Study Type: Interventional
• Enrollment (Estimated): 792
• Phase: Not Applicable

Contacts and Locations

• Study Contact: Name: Debra Dobbs, PhD; Phone Number: 813-974-5767; Email: ddobbs@usf.edu

Study Locations

• United States
  • Florida
    • Tampa, Florida, United States, 33612
      • Recruiting
      • University of South Florida
      • Contact: Debra Dobbs, PhD; Email: ddobbs@usf.edu
    • Tampa, Florida, United States, 33620
      • Recruiting
      • University of South Florida
      • Contact: Debra Dobbs, PhD.; Phone Number: 813-974-5767; Email: ddobbs@usf.edu
      • Contact: Jonathan Clapp, PhD; Email: jdc2@usf.edu
      • Principal Investigator: Debra Dobbs, PhD

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

Description

Inclusion Criteria:

The AL community eligibility criteria include a minimum of 40+ beds and provide memory care services to at least 35% of their residents, and access to hospice services from Lifepath or Suncoast Hospice. The AL size of 40+ beds is selected so we will be able to recruit a minimum of 14 residents per site, based on the power analysis for the sample size of 450 for the primary study outcome of documentation of ACP discussions.

Residents are eligible if 1) they have a dementia diagnosis confirmed by the resident's physician (physician's signature required by University of South Florida (USF) Institutional Reiew Board (IRB) in prior clinical trial) regardless of dementia severity (mild, moderate, or severe), 2) if they have been admitted to the AL in the last month, and 3) if they have a legally responsible representative who understands English.

Staff are eligible if they are currently employed with the participating study AL as a registered/licensed practical nurse, administrator, or dementia care coordinator of a memory care unit and English speaking and 21 years of age or older.

Family members are eligible if 1) they are listed as the legally responsible party in the chart records for the resident with ADRD, 2) they understand English, and 3) are at least 21 years of age or older. This could include someone related to the person, a close friend or a legal guardian who oversees the person's care and is responsible for decisions about their care.

Exclusion Criteria:

AL sites will be ineligible if 1) the are not a licensed Florida assisted living facility; 2) they have previously participated in a PCEAL-DCP clinical trial (2018-2021) to avoid possible experimental contamination effects, and 3) if no staff employed at the AL are willing to participate in the study.

Residents are ineligible if they: 1) are currently receiving hospice services because residents who receive hospice are already engaged in ACP discussions upon admission; 2) if they are discharged from assisted living to another setting (nursing home or hospital) or are admitted to hospice or have died before baseline data is collected.

Staff will be ineligible if they are not licensed nurses, administrators or dementia care coordinators of a dementia care unit or terminated/resign before baseline data is collected.

Family are ineligible if: 1) they are under 21 years of age and do not understand spoken or written English and if there is already a legal authorized representative for a resident participating in the study (one family member per resident).

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Study Plan

How is the study designed?

Design Details

• Primary Purpose: Supportive Care
• Allocation: Randomized
• Interventional Model: Parallel Assignment
• Masking: Single

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Intervention -; Hospice nurses or social workers selected from LifePath and Suncoast Hospice organizations will train the AL interventionists on the PCEAL-DCP intervention. All hospice nurses and social workers who are facilitators will be licensed practical nurses, registered nurses or master's in social work. Prior to the intervention, the hospice facilitators will complete a four-hour workshop about the topics to cover and be trained on the protocol to follow for facilitation of the four-week PCEAL sessions so each cluster in the treatment group is trained in the same manner.	Behavioral: Palliative Care Training; Teaching about caring for individuals with
No Intervention: Control; Wait-listed group will receive the PCEAL-DCP curriculum after completion of the study.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Documentation of Advance Care Planning (ACP) Discussions	Resident Chart: Percent of residents in sample with documentation in chart of any discussion of ACP with residents or family, last 90 days. Resident Chart: Percent of residents in sample with living will, health care surrogate, durable power of attorney and do not resuscitate (DNR)s in chart. (yes/no).	Baseline, 3, and 6 months

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Hospice Use	Hospice use (Secondary Outcome) Resident Chart: Percent of residents in sample admitted to hospice: Calculated based on # of residents admitted to hospice in last three months. Resident Resident Resident Hospice use (Secondary Outcome) Resident Chart: Percent of residents in sample admitted to hospice: Calculated based on # of residents admitted to hospice in last three months. Resident Resident Resident Percent of residents in sample admitted to hospice: Calculated based on # of residents admitted to hospice in last three months.	Baseline, 3, and 6 months

Other Outcome Measures

Outcome Measure	Measure Description	Time Frame
Palliative Care Staff Knowledge	Thompson Palliative Care Knowledge 3-items, range 1-3. (alpha = 0.81) [65]	Baseline, 3, and 6 months
Staff Self-Efficacy	Lazenby Self-efficacy with patient- and Family-Centered Communication 12-items, range 12-60 (alpha = .91) [28]	Baseline, 3, and 6 months
Staff commitment	Montgomery 9-items, range 9-45, (alpha =.90) [49, 54]	Baseline, 3, and 6 months
Staff satisfaction with org. support.	Montgomery 10-items, range 10-50; (alpha = .88) [49, 54]	Baseline, 3, and 6 months

Collaborators and Investigators

• Sponsor: University of South Florida
• Collaborators: National Institute on Aging (NIA)
• Investigators: Principal Investigator: Debra Dobbs, PhD, University of South Florida

Publications and helpful links

General Publications

• Dobbs D, Yauk J, Vogel CE, Fanfan D, Buck H, Haley WE, Meng H. Feasibility of the Palliative Care Education in Assisted Living Intervention for Dementia Care Providers: A Cluster Randomized Trial. Gerontologist. 2024 Jan 1;64(1):gnad018. doi: 10.1093/geront/gnad018.
• Bureau Y, Rodat G, Barriere H, Litoux P, Bureau B. [Cutaneous mastocytosis in adults with hepatic mastocytosis and blood monocytosis]. Bull Soc Fr Dermatol Syphiligr. 1965 Nov-Dec;72(6):850-3. No abstract available. French.

Study record dates

Study Major Dates

• Study Start (Actual): January 28, 2025
• Primary Completion (Estimated): December 1, 2028
• Study Completion (Estimated): August 1, 2029

Study Registration Dates

• First Submitted: December 3, 2024
• First Submitted That Met QC Criteria: December 3, 2024
• First Posted (Actual): December 9, 2024

Study Record Updates

• Last Update Posted (Actual): April 29, 2026
• Last Update Submitted That Met QC Criteria: April 27, 2026
• Last Verified: April 1, 2026

More Information

Terms related to this study

• Keywords: palliative care; dementia; education; Alzheimer's; end of life; staff training; dementia care; assisted living
• Additional Relevant MeSH Terms: Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Mental Disorders; Pathologic Processes; Behavioral Symptoms; Neurocognitive Disorders; Tauopathies; Neurodegenerative Diseases; Stress, Psychological; Pathological Conditions, Signs and Symptoms; Behavior; Treatment Adherence and Compliance; Health Behavior; Patient Acceptance of Health Care; Caregiver Burden; Alzheimer Disease; Dementia; Death; Patient Participation
• Other Study ID Numbers: 007811; 1RF1AG087325-01 (U.S. NIH Grant/Contract)

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No