Our Care Wishes - Dementia

NCT05033262 | Completed Results

• 2 other identifiers: 834878P30AG064105-01
• Study Type: interventional
• Target: 14
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Dementia; Alzheimer Disease; Memory Impairment

Keywords

Advance Care Planning; Shared Decision-Making; Web-Based Platform; Memory Care; Nursing Homes

Outcome Measures

Primary Outcomes (5)

• 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

Other Outcomes (1)

• COVID-19 Impact Questionnaire

  1 week

Study Arms (2)

Control

NO INTERVENTION

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.

Intervention

EXPERIMENTAL

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

Interventions

Our Memory Care Wishes OTHER

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.

Intervention

Eligibility Criteria

• Age: 21 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• 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.

You may not qualify if:

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

Sponsors & Collaborators

• University of Pennsylvania: lead
• National Institute on Aging (NIA): collaborator

Study Sites (1)

University of Pennsylvania

Philadelphia, Pennsylvania, 19104-4217, United States

Location

MeSH Terms

Conditions

Dementia; Alzheimer Disease; Memory Disorders

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders; Tauopathies; Neurodegenerative Diseases; Neurobehavioral Manifestations; Neurologic Manifestations; Signs and Symptoms; Pathological Conditions, Signs and Symptoms

Results Point of Contact

• Title: Emily Summerhayes
• Organization: The University of Pennsylvania School of Nursing

esummer@nursing.upenn.edu

6099233786

Publication Agreements

• PI is Sponsor Employee: No
• Restrictive Agreement: No

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: DOUBLE
• Who Masked: INVESTIGATOR, OUTCOMES ASSESSOR
• Purpose: SUPPORTIVE CARE
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: August 18, 2021
• First Posted: September 2, 2021
• Study Start: October 7, 2020
• Primary Completion: September 8, 2021
• Study Completion: September 8, 2021
• Last Updated: June 22, 2023
• Results First Posted: June 22, 2023

Record last verified: 2023-06

Locations

US (1)