Charlie Lytle is a retired HIV educator living in Rochester, New York. As the former caregiver for his husband, Paul Leonberger, Charlie intimately understands the importance of advance care planning — and considering dementia in those conversations and preparations.

His experience as a caregiver inspired him to create a dementia directive using Compassion & Choices’ Dementia Values & Priorities Tool, an interactive resource that helps people plan for their care and document their wishes if they receive a dementia diagnosis.

“As I was looking over the dementia directive, I filled it out and I made sure that I had everything in place. In fact, my daughter already has a copy of it and knows exactly what I want — I want to be able to live my life to the fullest,” Charlie reflects. “I think it’s so important to make those decisions so your loved ones don’t have to do it for you… If you want things to go your way, you have to put it in writing.”

A family walks through the Dementia Values & Priorities Tool

Nearly half of older adults die with some form of dementia, a general term that describes the progressive loss of language and other skills severe enough to interfere with daily life. Research shows that the risk of developing dementia is significantly higher than previously thought, especially for women and African American, Latino, and Hispanic communities. 

Dr. Jo Ann O’Quin, a Professor Emerita and Geropsychologist at the University of Mississippi, has witnessed firsthand the growth in dementia diagnoses in the United States. “With the onset of the baby boomers turning 65, I’ve seen a dramatic increase in the need,” she remarks. “We’ve also seen a rise in the different types of dementia — like Lewy body, frontotemporal — that we did not see 20 to 25 years ago.” 

To address this growing need, Compassion & Choices and the American Society on Aging (ASA) launched Essential Conversations, a national initiative to normalize conversations about dementia and improve dementia-specific advance care planning. In partnership with five local organizations, we brought the Dementia Values and Priorities Tool to communities and kitchen tables across the country.

A dementia planning workshop in Milwaukee, Wisconsin

Advance care planning is particularly important when it comes to dementia because the ability to communicate and make decisions diminishes as the disease progresses. 

Having served as a caregiver, Katy Lovell of Helena, Montana, believes it is vital to express our care goals and prepare for the possibility of a future with dementia to ensure that we receive the care we want. “My grandfather passed from Alzheimer’s when he was 94,” she shares. “I’m not sure the healthcare decisions we made for him were what he would’ve chosen. I wish we had asked him before we were making those decisions.” 

This experience taught Katy that advance care planning conversations should happen early and often. Discussing care wishes “is as important for the person who is living with the disease as it is for caregivers,” she insists. “It’s a whole community experience, and the more people that we can involve in this process, in these conversations, the better.”

Citing his motivation for using the Dementia Values and Priorities Tool,  Michael Savini, a retired engineer living with dementia in New York, expresses: “I want to make sure other people would know… what I would desire.”

Michael and Claire Savini at their home in New York

Michael’s wife and care partner, Claire Savini, adds: “We have advanced directives in place now, but when you look at the [Dementia Values & Priorities Tool], it’s a lot more specific. I would want [our kids] to have as much information as possible so that they could provide care in a way that we want and not have to make decisions that would be difficult for them to make.”

Nearly 1,800 people like Claire and Michael Savini were reached with the Dementia Values & Priorities Tool during the six-month Essential Conversations project. 

Through presentations, webinars, and individual consultations, community members and their caregivers were equipped with vital information about dementia and support for facing the future.

Essential Conversations is one powerful example of how Compassion & Choices and our partners are empowering individuals to chart their end-of-life journey and working to make healthcare increasingly patient-directed.

Join us by creating your dementia directive today. Make sure you share it with your loved ones, healthcare proxy, and healthcare providers, and request that it be added to your medical record. Because we all deserve to receive the care that reflects our values and priorities. 

Visit the Compassion & Choices YouTube channel to watch the Essential Conversations partners in action in their communities.

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