Our Care Wishes - Dementia

Adaptation of the OurCareWishes.Org ACP Platform for Persons With Dementia in NHs and Their Caregivers

This Our Care Wishes- Dementia pilot study is adapting an existing successful online advance care planning platform to the specific needs of persons living with dementia and shared decision-makers (SDMs) and testing the usability and acceptability among nursing home residents and SDMs.

Study Overview

• Status: Completed
• Conditions: Dementia; Alzheimer Disease; Memory Impairment
• Intervention / Treatment: Other: Our Memory Care Wishes

• Study Type: Interventional
• Enrollment (Actual): 14
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United States
  • Pennsylvania
    • Philadelphia, Pennsylvania, United States, 19104-4217
      • University of Pennsylvania

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 21 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: Yes

Description

Inclusion Criteria:

• Eligible PLWD will be receiving short-or long-term care at a participating NH, have documented moderate to severe cognitive impairment as measured by the Cognitive Function Scale included in the Minimum Data Set 3.0, 65 and have an identified SDM.

Exclusion Criteria:

• Participants are not eligible discharged from participating NHs, or do not have access to a telephone or video chat.

Study Plan

How is the study designed?

Design Details

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

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
No Intervention: Control; Participants who are allocated to the control arm will complete baseline measures and then receive usual advanced care planning care and discussions with the nursing facility staff. Control arm participants will not review the Our Memory Care Wishes website. Participants will complete follow up measures one week after the baseline interview.
Experimental: Intervention; Participants allocated to the intervention group will complete baseline measures. Then, the participant will review the Our Memory Care Wishes website and enter advanced care planning decisions and preferences into the website. Participants will complete follow up measures one week after the baseline interview. Participants receiving the intervention will complete additional follow up measures which include surveys measuring the ease of use of the website.	Other: Our Memory Care Wishes; Our Memory Care Wishes is a web-based advance care planning platform designed for persons living with dementia in nursing homes to discuss and document healthcare and daily life preferences with the help of shared decision-makers. Penn researchers meet via Zoom with PLWD and their SDMS and nursing home staff to facilitate website completion.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Adapted Decision Making Confidence Scale	Items from the Surrogate Decision-Making Confidence Scale and 9-item ACP Engagement Survey were used and adapted to capture the confidence in advanced care planning decision-making from both persons living with dementia and their shared decision-maker' points of view. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).	Baseline
Post Adapted Decision Making Confidence Scale	Items from the Surrogate Decision-Making Confidence Scale and 9-item ACP Engagement Survey were used and adapted to capture the confidence in advanced care planning decision-making from both persons living with dementia and their shared decision-maker' points of view. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident). This is the second time point the measure was collected.	1 week
Website Ease of Use	This scale measures the ease of use of the website. This scale uses a Likert scale from 0 (very hard) to 10 (very easy). These data were collected from PLWDs and SDMs in the intervention group.	1 week
Rate of ACP Website Completion - Time	This tool measured total time spent by participants on the advance care planning website. Total time in minutes spent on the website were collected. Because SDMs navigated the website with the PLWD alongside them, this measure was only used to SDMs in the intervention group.	1 week
Rate of ACP Website Completion - Questions Completed	This tool measured what percentage of the website was completed by participants. Because SDMs navigated the website with the PLWD alongside them, this measure was only associated with SDMs in the intervention group.	1 week

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
COVID-19 Impact Questionnaire	This scale measures how participants' advance care planning decisions were impacted by the COVID-19 pandemic. Participants can choose whether or not the COVID-19 pandemic affected their healthcare preferences, specifically if participants prefer to receive care via a ventilator and if participants prefer to receive treatment in nursing facility over visiting the hospital.	1 week

Other Outcome Measures

Outcome Measure	Measure Description	Time Frame
COVID-19 Impact Questionnaire	Participants were asked if their healthcare preferences changed due to the COVID-19 pandemic. Items included: Since COVID, planning for the future is: (1) less important (2) more important, or (3) the same; Since COVID, the sense of urgency to name a supportive decision maker has: (1) increased (2) decreased, or (3) remained the same.; Since COVID, my preferences for decisions about breathing machines (ventilators) have: (1) changed or (2) remained the same.; Since COVID, my preferences for going to the hospital for care versus receiving treatment in place have:(1) changed, or (2) remained the same.	1 week

Collaborators and Investigators

• Sponsor: University of Pennsylvania
• Collaborators: National Institute on Aging (NIA)

Study record dates

Study Major Dates

• Study Start (Actual): October 7, 2020
• Primary Completion (Actual): September 8, 2021
• Study Completion (Actual): September 8, 2021

Study Registration Dates

• First Submitted: August 18, 2021
• First Submitted That Met QC Criteria: August 27, 2021
• First Posted (Actual): September 2, 2021

Study Record Updates

• Last Update Posted (Actual): June 22, 2023
• Last Update Submitted That Met QC Criteria: June 21, 2023
• Last Verified: June 1, 2023

More Information

Terms related to this study

• Keywords: Shared Decision-Making; Advance Care Planning; Nursing Homes; Web-Based Platform; Memory Care
• Additional Relevant MeSH Terms: Mental Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Neurodegenerative Diseases; Tauopathies; Dementia; Alzheimer Disease
• Other Study ID Numbers: 834878; P30AG064105-01 (U.S. NIH Grant/Contract)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: UNDECIDED

Drug and device information, study documents

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