Roughly 11% of Americans over 65 are living with dementia, supported by more than 11 million unpaid caregivers, and almost none of them receive anything resembling a guide to what comes next after the diagnosis. A team of College of Nursing researchers at the Medical University of South Carolina has built one. Writing in Palliative and Supportive Care, they describe SUPPORT-D, a structured virtual palliative care program designed to map out the course of the illness for patients and the families caring for them.
The program runs six weeks and pairs a purpose-built educational booklet with two meetings with a nurse interventionist. Patients and caregivers work through the material on their own over several weeks, then sit down with the nurse to adapt what they have learned to their own circumstances. That combination matters: self-paced education keeps the burden manageable for caregivers who are already stretched thin, while the nurse visits keep the guidance from staying generic.
The approach was adapted from an intervention originally developed for pulmonary fibrosis by Kathleen Lindell, Ph.D., R.N., the Mary Swain Endowed Chair in Palliative Care Health at MUSC. The dementia team is led by Diana Layne, Ph.D., R.N., an assistant professor whose KL2 award from the South Carolina Clinical & Translational Research Institute made the work possible, with mentorship from Teresa Kelechi, Ph.D., associate dean for Research, who brings a background in geriatrics and dementia caregiver support.
Palliative care is still widely misunderstood as something reserved for the final weeks of life, when in practice it addresses symptoms, planning and family support across the length of a serious illness. Delivering it virtually, in a format families can work through at home, is one attempt to reach the many households that never get referred to such services at all.