Our Care Wishes - Dementia
Study Details
Study Description
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.
Condition or Disease | Intervention/Treatment | Phase |
---|---|---|
|
N/A |
Study Design
Arms and Interventions
Arm | Intervention/Treatment |
---|---|
No Intervention: Control
|
|
Experimental: Intervention
|
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.
|
Outcome Measures
Primary Outcome Measures
- Surrogate Decision Making Confidence Scale [Baseline]
This scale measures how confident surrogate decision-makers (primary caregivers in this study) are making decisions about loved ones living with dementia. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).
- Post Surrogate Decision Making Confidence Scale [1 week]
This scale measures how confident surrogate decision-makers (primary caregivers in this study) are making decisions about loved ones living with dementia. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).
- Adapted Decision Making Confidence Scale [Baseline]
This scale is the surrogate decision making confidence scale adapted to measure the confidence of nursing home residents living with dementia when making decisions about their preferences. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).
- Post Adapted Decision Making Confidence Scale [1 week]
This scale is the surrogate decision making confidence scale adapted to measure the confidence of nursing home residents living with dementia when making decisions about their preferences. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).
- 9-item ACP Engagement Survey [Baseline]
This scale measures how confident surrogate decision-makers (primary caregivers in this study) are when communicating with healthcare teams and their loved ones (persons living with dementia) about their advance care plans. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).
- Post 9-item ACP Engagement Survey [1 week]
This scale measures how confident surrogate decision-makers (primary caregivers in this study) are when communicating with healthcare teams and their loved ones (persons living with dementia) about their advance care plans. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).
- Website ease of use [1 week]
This scale measures the usability of the advance care platform. This scale uses a Likert scale. The higher the score the participate chose, the easier, more helpful or comfortable the participate found the website.
- Rate of ACP Website Completion [1 week]
This measure total time spent by participants on the advance care planning website and individual modules as well as total questions answered.
Secondary Outcome Measures
- COVID-19 Impact Questionnaire [1 week]
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.
Eligibility Criteria
Criteria
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.
Contacts and Locations
Locations
Site | City | State | Country | Postal Code | |
---|---|---|---|---|---|
1 | University of Pennsylvania | Philadelphia | Pennsylvania | United States | 19104-4217 |
Sponsors and Collaborators
- University of Pennsylvania
Investigators
None specified.Study Documents (Full-Text)
None provided.More Information
Publications
None provided.- 834878