Spring Generations journal Guest Editors Nora Super and Doug Pace both came at this issue with not only deep subject matter expertise on the topic of Alzheimer’s and related dementias and what it’s like to live with these conditions, but extensive personal experience as well as strong opinions about what is necessary to cover in an issue on Dementia and Living Well.
This made for a thorough, well-rounded journal and an easy process. When reading about these guest editors, one realizes they have had a national impact on how we approach, think about, and treat people with dementia and Alzheimer’s.
Super’s father and his three siblings all had Alzheimer’s disease and she said she “saw firsthand how complicated our health and long-term care systems are to navigate and the toll the disease takes on family caregivers.”
“But I also experienced the love we all had for our relatives living with dementia,” she added. And considering that the number of people living with dementia is expected to double by 2050, and many may live with the disease for a long time, she knows “we need to ensure that people are educated about ways to improve their brain health, as well as resources available so that they can live as independently as possible and focus on what matters to them.”
Pace, too, has “experienced up close and personal the devastating effects of dementia in my immediate and extended family and friends.”
Most people living with dementia will need professional care and support services at some point during the disease, so it is critical that the delivery of said services be person-centered, Pace added. “It starts with knowing the person, providing a consistent routine, putting the person before the task and using every interaction or task as an opportunity for engagement.”
Person-centered care that is organized around the person’s and their caregiver’s lives and not left to decisions by healthcare providers or paid caregivers, is woven throughout this well-planned issue, which provides a thoughtful mix of new research and personal pieces.
Super is a senior fellow at the Long-Term Quality Alliance (LTQA) (of which Pace was the founding executive director in 2010) and a private consultant who works on payment and policy to integrate health and long-term services and support. She also has recently been working to implement a new dementia-care payment model within Medicare to address the needs of people living with dementia and their caregivers.
‘I also experienced the love we all had for our relatives living with dementia.’
From 2013–2015 she served as executive director of the White House Conference on Aging and directed a nationwide effort to identify and advance actions to improve the quality of life for older adults. In this role she helped launch the Dementia-Friendly America and Geriatric Workforce Enhancement programs.
In 2021 she created and led the Milken Institute Alliance to Improve Dementia Care—a stakeholder coalition of more than 100 partners from health systems, provider groups, industry, research, advocacy, philanthropy, academia, government, and people living with dementia and their caregivers. Before joining the Milken Institute, Super held leadership positions at AARP, Kaiser Permanente, USAging, and the U.S. Department of Health and Human Services.
Since 2015, Pace has directed long-term and community-based care at the Alzheimer’s Association, providing leadership in the Association’s quality care strategies to long-term and community-based care organizations. He also engages thought leaders in the field to influence how care is delivered to individuals living with dementia in these settings, developing strategies to increase adoption of evidence-based practices, and leading the implementation of these strategies.
He began his career in aging as a nursing home administrator in Nashville, TN, for a 249-bed community that included a skilled nursing facility, a dedicated memory care unit, and assisted living, followed by serving as the President of Leading Age TN and Vice-President of Culture Transformation at Leading Age in Washington, DC. In addition to his being the executive director at LTQA, Pace also served as the executive director of the National Commission for Quality Long-Term Care at The New School and the Advancing Excellence in America’s Nursing Home Campaign. In his role at the Alzheimer’s Association he served as editor on the Alzheimer’s Dementia Care Practice Recommendations released in 2018 as a supplement to The Gerontologist.
His aim for this journal is that it provides useful information and guidance for people with dementia and their care partners so they can achieve the highest possible quality of life. “The more information they have, the better equipped they are to make informed decisions,” he said.
“Some of the strongest, most passionate advocates I know are people living with dementia. I’ve seen firsthand what lifestyle changes, such as exercise, nutrition, and a sense of purpose, can do to improve brain health for all of us—even those living with dementia,” added Super.
“My hope is that this issue of Generations inspires the millions of people at risk for and living with dementia, as well as their loved ones, to know that they can live well with dementia and that there are resources and supports to help them.”
Both guest editors share the sentiment that the ultimate goal would be a world without dementia and Alzheimer’s, but until that time they would like to guarantee people have access to high-quality, person-centered care and support.
“My vision is a world in which everyone living with dementia and their caregivers have access to comprehensive dementia care programs that provide healthcare, behavioral, psychological, and social services throughout the dementia care journey,” said Super.
Alison Biggar is ASA's Editorial Director.
Photo credit: Rawpixel.com/Shutterstock
