As a Swigart Ethics Fellow during her second year at Geisel School of Medicine, Charlotte Berry ’25, worked on a research project with Robert Santulli, MD, an honorary associate professor of psychiatry at Geisel and a senior lecturer in Dartmouth’s Department of Psychological and Brain Sciences, Amelia Cullinan, MD, an associate professor of medicine and a member of the Dartmouth Health palliative care team, along with dementia patients and their families to create a tool to facilitate advance care planning and improve communication between providers and those affected by dementia.
Drawing on her family’s experiences caring for her mother who was diagnosed with dementia, Berry thought that in addition to an advance directive, patients and their families would benefit from having goal-oriented conversations about care with healthcare providers—ideally early in the disease process.
Berry’s endeavor to find such a tool led her to the Serious Illness Conversation Guide (SICG), an evidence-based tool designed for clinicians to approach serious illness conversations. While the SICG offers promise for those conversations in dementia, it had not been adapted to address the unique needs of dementia patients.
“My aim was to develop a novel version of the SICG to be utilized in the healthcare of individuals with dementia in conjunction with their caregivers,” Berry explains. “We sought to create this tool with the insight of topical experts and using patient- and caregiver-tested language to aid in incorporating the goals and values of the patient in future healthcare decisions as their cognitive abilities decline.
“In retrospect, I think this was a pathway for me to address some of the challenges my family faced as my mother’s dementia progressed,” she says.
Berry’s adaptation of that guide resulted in the Serious Illness Conversation Guide for Dementia (SICG-D), and led to a published paper, as lead author, in the American Journal of Hospice and Palliative Care.
In its original form, the SICG offers both strengths and limitations for addressing serious illness conversations in dementia. It is a well-validated tool with widespread use and is easily disseminated for use by healthcare providers who may care for dementia patients. In contrast to other healthcare planning tools such as advance health directives, the SICG is open-ended, focusing on values rather than specific procedures—providing a more flexible and adaptable framework for approaching difficult conversations in dementia.
Berry and fellow researchers conducted a multi-stage, iterative study design in adapting the SICG for dementia that included feedback from experts in relevant fields, patients, and their families.
The SICG-D maintains the same general format that underlies the success of the original SICG, with key adaptations that allow for better incorporation of the patient-caregiver partnership, and provides clinicians with dementia-specific language applicable to dementia care and progression.
Special consideration for the caregiver role incorporates questions and phrases to address their experience and potential associated stress. For example, in the adapted version of the SICG, clinicians are provided with example language for expressing understanding, a phrase emphasizing caregiver burden was added: “caring for someone with dementia can be very, very difficult.”
“As someone who went through this with my family, you can feel a little lost, but I think conversations in the guide about hopes, fears, and worries—in the context of clinical care is important even if it doesn’t necessarily change the outcome,” Berry says. “It’s especially important toward the end of the disease when loved ones are in the position of making big decisions.”
“Charlotte’s paper on the SICG for dementia is an important contribution to the field. It is crucial for there to be thoughtful advance care planning for persons with dementia, but there are very few tools available to help clinicians with this task,” says Santulli, who advised her throughout the process. “This is, in my opinion, the best tool. I hope it will be widely adopted.”
Berry and Santulli met during her undergrad years at Dartmouth after her mother’s diagnosis. “A friend of mine had a good experience taking a course Dr. Santulli taught on dementia and aging. So, I reached out to him because I wanted to talk with someone who understood this disease,” Berry recalls. “We met, chatted, and he encouraged me to get involved in a project creating an advance healthcare directive for dementia—the Dartmouth Dementia Directive. On a personal level, he has been incredibly supportive of me as I experienced my mother’s diagnosis and death. Professionally, he has encouraged me to contribute to the field of dementia research and our relationship has been academically productive—he’s an awesome mentor and beloved by his patients.”
“One of the wonderful qualities of both Dartmouth and Geisel,” Santulli says, “is the opportunity and encouragement for close collaboration between students and faculty on research and other projects. No doubt, this collaborative ethic contributed to Charlotte's success in creating such a valuable clinical instrument.”