A diagnosis of dementia changes the course of a life. A collaborative study called SPIRIT (Sharing Patient’s Illness Representation to Increase Trust) allows individuals with early stage dementia who have mild to moderate cognitive impairment and their loved ones to take control and plan for future care.
Funded by a $3 million grant from the National Institute on Aging to Emory University School of Nursing, SPIRIT was developed and tested to promote open, honest discussions among all who are affected by early-stage dementia before it progresses to an advanced stage where persons living with dementia can no longer participate in such discussions meaningfully.
Because dementia affects a person’s ability to make decisions later in life, individuals who are in the early stages are eligible to enroll in the study and gain access to resources for planning their future care.
Both Northwestern and Rush Alzheimer’s Disease Research Centers are study sites with Emory, through which participants can enroll in the study. Due to the pandemic, all study visits are online or over the phone so no travel or in-person interactions are needed.
The accessible nature of the study has been a benefit to a local Chicagoland family who enrolled in the study. Phyllis participated in the SPIRIT Study with her husband, who is diagnosed with Alzheimer’s disease,
Phyllis said it is especially important for her family’s involvement in the study to offer an African American couple’s perspective. Alzheimer’s disease disproportionately affects African Americans and their experiences are vastly underrepresented in research.
“Contributing to research can help others and all it takes is your time,” Phyllis said. “There has been mistrust between researchers and African Americans, but this is a step toward making a long-term contribution that can inform treatments in the future.”
Through four remote visits over the course of approximately one year, SPIRIT encourages open and honest dialogue about the challenges between a care partner and the person living with dementia. Through these discussions, the realities of Alzheimer’s disease and related dementias come to light and the pair can better prepare for what is to come.
Conversations about disease progression and end-of-life care can be fraught with fear, uncertainty, and cultural concerns for people living with dementia and their care partners alike. Making room for such conversations in the early stage allows people living with dementia the greatest opportunity to share their values and preferences with their care partners. By participating in SPIRIT, people living with dementia can equip their care partners – and researchers too – with the knowledge they need to make informed decisions for future care.
If you are interested in participating, Northwestern, Rush and Emory staff will schedule phone calls with you to determine eligibility. SPIRIT staff will explain the study in detail and allow time to answer any questions you have before you decide whether or not to participate.
Phyllis noted that being involved in SPIRIT has been helpful to both her family and to furthering dementia care. She said, “Being involved in the study gives you a chance to reflect on the journey of life, and feel like it’s going to make a difference.”
If interested in learning more about SPIRIT contact Debbie Dyslin, LCSW, site coordinator at Northwestern via email (deborah.dyslin@northwestern.edu) or Judy Phillips, site coordinator at Rush (Judy_Phillips@rush.edu).
