Clinical trial NCT03861429: Me & My Wishes: An Efficacy Trial Using Videos
Official title: Me & My Wishes: An Efficacy Trial of Long Term Care Residents With Alzheimer's Using Videos to Communicate Care Preferences With Caregivers
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Health Communication
Lead sponsor: University of Utah
Sponsor class: OTHER
Collaborators: name: Brown University
name: National Institute on Aging (NIA)
First posted: 2019-03-04
Enrollment: 138
Sex: ALL
Minimum age (years): 65
Standard ages: OLDER_ADULT
Accepts healthy volunteers: no
Allocation: RANDOMIZED
Intervention model: SEQUENTIAL
Intervention model description: The investigators propose Stage II efficacy testing of Me \& My Wishes using a randomized wait-list control design that allows the investigators to compare the effects between an early intervention group (Group 1) and a wait-list "control" group (Group 2).Six NHs matched on number of beds and payor mix will be randomly assigned to one of two groups.
Primary purpose: SUPPORTIVE_CARE

Brief summary: The aim of this study is to determine whether the Me \& My Wishes intervention positively impacts communication of preferences among nursing home residents with dementia and their family caregivers and care team.

Detailed description: Me \& My Wishes are videos of nursing home residents talking about their preferences for care, including four sections: About Me, Preferences for Today, Preferences for Medical Intervention and End of Life, and Afterthoughts. Knowing what residents want is essential to staff's ability to provide quality care and can inform family caregivers decision making especially in later stages of life as the resident's cognition declines-a time when family caregivers often feel unprepared. Persons with mild to moderate dementia can accurately express their everyday and EOL preferences, however, stereotypes persist about the decision making abilities of people with dementia that often prevent their involvement in conversations about care. The investigators propose to conduct a Stage II efficacy trial of Me \& My Wishes-a novel approach for communicating resident care preferences-by creating videos with 48-54 nursing home residents with mild to moderate dementia and sharing their personalized video with informal (family) and formal (staff) caregivers. The investigators will employ a randomized wait-list control design in which residents in control nursing homes will delay sharing their video. Videos may be viewed two ways: 1) in resident quarterly care conferences; and 2) via a web-based link with resident-identified family members or friends.

Eligibility criteria: Resident Inclusion Criteria:

* Identified as having Alzheimer's or related dementia
* Mild to moderate cognitive impairment (BIMS = 8-15, (MDS C0500) (nursing home residents only)
* Makes Self Understood = \<1 (MDS B0700)/present in medical record
* Understood By Others = \<1 (MDS B0800)/present in medical record
* Reside at the facility at least 2 weeks identified as a long-term resident
* Age \>65 years
* Speaks English

Family Inclusion Criteria:

* Speaks English
* Willing and able to watch the videos
* Willing to complete short surveys. Being unable to attend care conference to view the video (e.g. due to distance) will not exclude family from participating.

Staff Inclusion Criteria:

* Speaks English
* Willing to watch the videos
* Willing to complete short surveys

Resident Exclusion Criteria:

* Limited communication capacity (e.g. aphasia)
* Comatose
* Cognitively intact
* Severe cognitive impairment

Primary outcomes:
measure: Number of Participants With a Documented Discussion of Goals of Care
timeFrame: Baseline, time of sharing (3 months from baseline), and 90 days post sharing video
Secondary outcomes:
measure: Self-efficacy for Communicating Preferences
timeFrame: Baseline, time of sharing (3 months from baseline), and 90 days post sharing video
Other outcomes:
measure: Concordance of Psychosocial Preferences Between Video and Staff
timeFrame: Baseline, time of sharing (within 3 months of baseline), and 90 days post sharing video
measure: Concordance of End of Life Preferences, Video and Staff
timeFrame: Baseline, time of sharing (within 3 months of baseline), and 90 days post sharing video
measure: Concordance of Psychosocial Preferences, Video and Family
timeFrame: Baseline, time of sharing (within 3 months of baseline), and 90 days post sharing video
measure: Concordance of End of Life Preferences, Video and Family
timeFrame: Baseline, time of sharing (within 3 months of baseline), and 90 days post sharing video
Locations:
city: Canby
country: United States
facility: Marquis Hope Village Assisted Living
state: Oregon
city: Forest Grove
country: United States
facility: Marquis Forest Grove Assisted Living
state: Oregon
city: Forest Grove
country: United States
facility: Marquis Forest Grove Post Acute Rehab
state: Oregon
city: Gresham
country: United States
facility: Regency Gresham Nursing and Rehabilitation Center
state: Oregon
city: Wilsonville
country: United States
facility: Marquis Wilsonville Assisted Living
state: Oregon
city: Wilsonville
country: United States
facility: Marquis Wilsonville Post Acute Rehab
state: Oregon
city: Woodburn
country: United States
facility: French Prairie Nursing and Rehab
state: Oregon
city: Woodland
country: United States
facility: Woodland Care Center
state: Washington
Study officials:
References:
citation: Towsley GL, Neller S, Baier RR, Wong B. Me & My Wishes: Concordance of End-of-Life Preferences between Residents with Dementia, Family, and Staff. J Palliat Med. 2022 Jun;25(6):880-887. doi: 10.1089/jpm.2021.0111. Epub 2021 Dec 28.