Me & My Wishes: An Efficacy Trial Using Videos

Study Overview
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Brief Summary
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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
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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.

Official Title
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Me & My Wishes: An Efficacy Trial of Long Term Care Residents With Alzheimer's Using Videos to Communicate Care Preferences With Caregivers

Conditions
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Health Communication

Intervention / Treatment
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* Behavioral: Me & My Wishes


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 65 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Supportive Care
Allocation: Randomized
Intervention Model: Sequential Assignment
Interventional 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.
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: Me & My Wishes Intervention/Group 1<br>In Group 1 (early intervention group) NHs, video recording, editing, and viewing will occur within three months of baseline. | Behavioral: Me & My Wishes<br>* Me & My Wishes videos communicate residents' preferences via personalized video recorded conversations. Me & My Wishes are videos of nursing home residents talking about their preferences for care, and include four sections: About Me, Preferences for Today, Preferences for Medical Intervention and End of Life, and Afterthoughts.<br>|
| Other: Me & My Wishes Wait-list control/Group 2<br>In Group 2 (delayed sharing) NHs, residents will be on a wait-list; after the delayed start, their video will be produced and viewed within three months. | Behavioral: Me & My Wishes<br>* Me & My Wishes videos communicate residents' preferences via personalized video recorded conversations. Me & My Wishes are videos of nursing home residents talking about their preferences for care, and include four sections: About Me, Preferences for Today, Preferences for Medical Intervention and End of Life, and Afterthoughts.<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Communication of preferences | Goals of care discussions (change in documentation in medical record, e.g. social work note) | Baseline, time of sharing (within 72 hours of sharing video), and 90 days post sharing video | 
| Communication of preferences | Self-reported conversations (change in self report: resident, family, staff surveys) | Baseline, time of sharing (within 72 hours of sharing video), and 90 days post sharing video | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Confidence of communicating preferences | Confidence in expressing or communicating about resident preferences; 1) change in resident, Family, Staff Survey (self-efficacy items, range 1-5, higher is more confident); 2) New or changed care planning documents (e.g. POLST) | Baseline, time of sharing (within 72 hours of sharing video), and 90 days post sharing video |