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. We propose to conduct a Stage II efficacy trial of Me & My Wishes?our 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. We 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 secured web-based link with resident-identified family members or friends. To evaluate efficacy, we will evaluate communication of preferences (e.g. goals of care discussions, self-report conversations about preferences), among residents, family and staff at three time points: baseline, when sharing the video, and 90 days after sharing the video. We hypothesize that compared to the waitlist control group (Group 2), the intervention group (Group 1) will have an increase in the proportion of residents with documented goals of care discussions and greater self-efficacy for communicating preferences. We will also describe congruence of preferences observed in the Me & My Wishes video, care conference audio recording, medical record, and in family and staff surveys. We will use mixed modeling to compare the outcome measures goals of care discussions and self-efficacy of communicating preferences between Group 1 (early intervention) and Group 2 (wait-list) at 3 time points. Ultimately, the increased knowledge and congruence of daily and end of life care preferences resulting from a scaled Me and My Wishes intervention will assist informal (family) and formal (staff) caregivers to better navigate decision making as residents transition to later Alzheimer's disease and related dementia stages and end of life.
Video recorded conversations are an innovative way for residents with Alzheimer's disease and related dementias to convey their individual wishes to their informal and formal caregivers. 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. The goals of this study align with a national aim of improving person-centered care, and to develop novel interventions to address the needs of persons with dementia and their caregivers over the disease trajectory including care at end of life.
