MUSC’s new manual for navigating dementia

For an estimated 11% of Americans over age 65 who have dementia and the over 11 million unpaid caregivers supporting them, there is no instruction manual for navigating life after diagnosis. A team of College of Nursing researchers at the Medical University of South Carolina is working to fill that gap.

The team is led by Diana Layne, Ph.D., R.N., assistant professor, and her mentor, Teresa Kelechi, Ph.D., associate dean for Research. 

Layne brings her expertise in dementia research to the team, and her KL2 award from the South Carolina Clinical & Translational Research Institute (SCTR) made this research possible. Kelechi, who serves as director of recruitment at SCTR, brings a rich background in geriatrics and dementia caregiver support. Their recent article published in Palliative and Supportive Care introduces a new structured virtual palliative care program – SUPPORT-D – designed to serve as a roadmap for the course of the illness. 

The six-week program, adapted from a pulmonary fibrosis intervention introduced by Kathleen Lindell, Ph.D., R.N., the Mary Swain Endowed Chair in Palliative Care Health, includes a specially designed educational booklet and two meetings with a nurse interventionist. Patients and caregivers complete the structured course independently over several weeks, then meet with the nurse interventionist to personalize the program to their specific needs. 

SUPPORT-D offers guided support in four main areas: understanding the disease, patient self-care, caregiver care and planning for the future. By offering support early, the program helps patients and caregivers to reduce unnecessary burdens and improve quality of life. 

Dementia is an umbrella term that describes symptoms such as memory loss, confusion and difficulty with thinking and decision-making. Alzheimer's disease, while not the only type, is the most common form. Because dementia often has a long and complex course, a diagnosis affects not only the person with the disease but also caregivers and family members. 

To address the challenges of the progressive condition, Layne's program centers on palliative care. Often confused with hospice care, which is meant for end-of-life, palliative care can begin at diagnosis and can include curative treatments. It focuses on symptom management, emotional support, decision-making and quality of life. 

Palliative care is not something to fear. It's an extra layer of support."

Diana Layne, PhD, RN, Assistant Professor, Medical University of South Carolina

Providing the targeted SUPPORT-D strategies meets a need that current dementia treatments often do not address. Shortages of neurologists can delay early diagnosis. Primary care visits are often too short to allow for comprehensive counseling, and families frequently leave appointments without clear guidance. Many turn to the internet for answers, which can increase fear and confusion. 

Strong evidence suggests that families want guidance on what to expect, but health care systems are not always set up to provide it. "We have been leaving them to their own devices without the information they needed to make the best possible choices," explained Layne. 

Both Layne and Kelechi understand the limitations of dementia support firsthand.

Layne began studying dementia through mentorship and her passion for palliative care, only to become a caregiver for both of her in-laws after they developed cognitive decline. She recently moved them into her home. "I was living everything my participants were talking about, and I was still struggling to navigate the system," she said. "If I'm struggling, I can't imagine what happens to people who don't have that baseline knowledge."

Informed by her own experiences, professional and personal alike, Kelechi empathizes with the plight of the caregiver and the difficulty of navigating care. "It's a frightening, lonely experience to make decisions that could affect someone financially and emotionally," she said. Her understanding of dementia has fueled her previous work and has culminated in this program. "I never gave up on making caregiving better," said Kelechi.

The results of this phase 1 feasibility trial speak to the team's commitment to constant improvement in dementia education and care. Seventy-six percent of participants completed the program, and most reported that the intervention was helpful. Participants used the booklet regularly and even brought it to medical appointments to guide their discussions with providers. Most noted that it was helpful in understanding the disease and planning for their future. 

Feedback from participants showed a desire for more support with stress management. A prior study by Kelechi found that mindfulness practices, gentle yoga and breathing movements can help to reduce anxiety. She and Layne plan to make these approaches a focus of future versions of the program. Their next step is to apply for National Institute on Aging (NIA) funding, which would allow the team to expand SUPPORT-D with additional elements requested by patients and caregivers after the study. "We'll give them a menu," said Kelechi. "And they can pick what works best for them."

SUPPORT-D shows that early palliative care for patients with dementia is not only possible, but it is welcomed. Families want guidance, structure and support at the beginning of the disease journey. By introducing planning early, this program empowers patients while they can still take part in decisions and reduces caregiver stress before a crisis hits.

The study lays the groundwork for larger clinical trials and signals a shift toward making palliative care a routine, supportive part of managing dementia, not something reserved for the final stages of life. 

"Making palliative care a common language in primary care can really improve quality of life," said Layne. "Early palliative care works, and families want it."