Study Shows Emotional and Ethical Strain of Surgery Decisions for People Living with Dementia

A new study offers a rare, in-depth look at how people living with dementia and their caregivers navigate surgical decision-making — and the heavy emotional toll that comes with it. Researchers found that families face deep uncertainty when weighing surgical and non-surgical options, struggling to anticipate outcomes, manage risk, and honor the patient’s wishes. The findings underscore the need for health care professionals to comprehend these experiences and offer more informed, dementia-specific support throughout the surgical process.

The study, “Patient and Caregiver Experiences with Surgical Decision-Making in the Context of Dementia,” published in Annals of Surgery, included in-depth interviews with nationally recruited people living with dementia and caregivers who faced a surgical decision within the past two years. Interviews explored surgical decision-making experiences. Using reflexive thematic analysis, researchers coded the transcribed interview data and developed themes related to decision-making priorities, strategies, experiences, and satisfaction.

The researchers identified four central themes:

1. Prioritizing quality of life: Families valued preserving independence, comfort, and meaningful activities over extending life at all costs.
2. Struggling with uncertainty: Caregivers and people living with dementia found it difficult to anticipate how surgery might affect cognitive or physical function, especially given limited data on outcomes in dementia.
3. The burden of choice: When patients could not participate in decisions, caregivers felt intense pressure to make the “right” choice — a moral and emotional weight that often persisted long after surgery.
4. Regret and misalignment: Some caregivers experienced regret when outcomes did not reflect what they believed the person they cared for would have wanted.

The study also revealed key subthemes, including fears that anesthesia could accelerate cognitive decline, anxiety over the demands of postoperative care, and the challenge of reconciling prior advance directives with the patient’s current condition. Together, these insights demonstrate how surgical decision-making for people living with dementia is both technically complex and emotionally fraught.

“Our study gives voice to families facing some of the hardest choices in medicine,” said Dae Hyun Kim, MD, MPH, ScD, associate director and senior scientist at the Hinda and Arthur Marcus Institute for Aging Research. “Caregivers often carry the emotional burden of making life-altering decisions without clear guidance on how surgery might affect their loved one’s memory, function, or quality of life. Clinicians need to recognize that burden and provide decision-making support tailored to the realities of dementia.”

In addition to Kim, the study was conducted by Rachel R. Adler, ScD, RD, research scientist, Center for Surgery and Public Health, Brigham and Women’s Hospital; Richard E. Chunga, MS, project director, Department of Gerontology, University of Massachusetts Boston; Joely A. Centracchio, BS, Department of Psychology, University of Miami; Sasha Boyers, Department of Psychology, University of Miami; Zeba N. Ahmad, PhD, staff psychiatrist, Department of Psychiatry, Massachusetts General Hospital; Karen R. Sepucha, PhD, director, Health Decision Sciences Center, Massachusetts General Hospital; Christina Sheu, BA, lead research assistant, Geriatrics and Serious Illness in Surgery, Center for Geriatric Surgery, Brigham and Women’s Hospital; Samir K. Shah, MD, MPH, assistant professor,  University of Florida Division of Vascular Surgery and Endovascular Therapy; Clancy Clark, MD, Director of Hepatobiliary and Pancreas Surgery, Virginia Mason Medical Center; Susan L. Mitchell, MD, MPH, senior scientist, Marcus Institute for Aging Research; Emily Finlayson, MD, MS, FACS, Fishbon Endowed Chair in Ambulatory Surgery II, Phillip R. Lee Institute for Health Policy Studies, University of California, San Francisco; Zara Cooper, MD, MSc, director, Center for Surgery and Public Health, director, Center for Geriatric Surgery, and Michele and Howard J. Kessler Endowed Chair in Surgery and Public Health, Brigham and Women’s Hospital; John Hsu, MD, MBA, director of the Program for Clinical Economics and Policy Analysis, Mongan Institute for Health Policy, Massachusetts General Hospital; Joel S. Weissman, PhD, chief scientific officer, Center for Surgery and Public Health, Brigham and Women’s Hospital; and Lara Traeger, PhD,  lead, Translational Behavioral Research in Cancer and Aging at the University of Miami/Sylvester Comprehensive Cancer Center.

About Hebrew SeniorLife
Hebrew SeniorLife, an affiliate of Harvard Medical School, is a national senior services leader uniquely dedicated to rethinking, researching, and redefining the possibilities of aging. Hebrew SeniorLife cares for more than 4,500 seniors a day across seven campuses throughout Greater Boston. Locations include: Hebrew Rehabilitation Center-Boston and Hebrew Rehabilitation Center-NewBridge in Dedham; NewBridge on the Charles, Dedham; Orchard Cove, Canton; Simon C. Fireman Community, Randolph; Center Communities of Brookline, Brookline; Jack Satter House, Revere; and Leyland Community, Dorchester. Founded in 1903, Hebrew SeniorLife also conducts influential research into aging at the Hinda and Arthur Marcus Institute for Aging Research, which has a portfolio of more than $87 million, making it one of the largest gerontological research facilities in the U.S. in a clinical setting. It also trains more than 500 geriatric care providers each year. For more information about Hebrew SeniorLife, follow us on our blog, Facebook, Instagram, Threads, and LinkedIn.

About the Hinda and Arthur Marcus Institute for Aging Research
Scientists at the Marcus Institute seek to transform the human experience of aging by conducting research that will ensure a life of health, dignity, and productivity into advanced age. The Marcus Institute carries out rigorous studies that discover the mechanisms of age-related disease and disability; lead to the prevention, treatment, and cure of disease; advance the standard of care for older people; and inform public decision-making.