By Stacey Kusterbeck
Patients with dementia have disproportionately higher risks post-surgery and often struggle with recovery from surgery, observes Keren Ladin, PhD, MSc, director of the Research on Ethics, Aging, and Community Health (REACH) Lab at Tufts University. Ladin and colleagues conducted a study to explore how persons with mild-to-moderate dementia and their caregivers experience medical and surgical decisions — especially with risks that are dementia-specific or heightened by cognitive impairment.1
The researchers interviewed nine persons with dementia and 21 care partners. Despite progressive cognitive decline and increased risk in this population, clinicians often did not address dementia-related risks when discussing interventions. Patients and caregivers largely relied on their own understanding of a dementia prognosis, rather than specific risk information from clinicians.
Clinicians frequently failed to mention these risks:
- Increased likelihood of cognitive decline or accelerated dementia progression following anesthesia or surgery.
- Elevated probabilities of postoperative delirium, functional loss, or complications disproportionate to benefits.
- Higher mortality rates tied to interventions in patients with dementia (both surgical and nonsurgical).
Since risks of medical interventions often are not covered during discussions with the clinical team, both the patients and care partners can end up being burdened with undesirable quality-of-life consequences. “When dementia-specific risks are omitted, caregivers and patients may consent to interventions without full awareness, later facing unexpected outcomes,” explains Ladin. For example, patients may face worsened cognition or reduced quality of life. This can lead to decisional regret, distress, and increased burden from caregiving tasks they were not anticipating. “Ultimately, diagnostic or treatment trajectories may feel misaligned with the patient’s values or longterm well-being,” says Ladin.
Frameworks such as supported decision-making or shared decision-making can help accommodate cognitive impairment while aiming to integrate goal-concordant care and patient preferences. “These are two distinct but complementary approaches to involving patients in healthcare decisions,” clarifies Ladin.
Shared decision-making is a collaborative process that assumes the patient has the capacity to understand their medical options and participate in decision-making. This approach might be used when a person with dementia still is able to weigh options and articulate preferences. In this model, clinicians provide clear, evidence-based information about the benefits and risks of different treatments. Patients share their values, preferences, and goals. Together, they arrive at a decision that aligns with what matters most to the patient. “This approach is widely used in situations where there are multiple medically reasonable options, such as cancer screening or elective surgeries,” says Ladin.
In contrast, supported decision-making is designed for individuals who have cognitive or communication impairments, such as those with dementia, intellectual disabilities, or brain injuries, and who may not be able to make decisions entirely on their own. “Supported decision-making becomes more critical as cognition declines, allowing the person to participate meaningfully in decisions with the right kind of help,” says Ladin. Supported decision-making emphasizes the person’s right to make decisions with the help of trusted supporters who assist in understanding medical information, communicating preferences, and navigating complex choices. Unlike surrogate decision-making or guardianship, the individual retains decision-making authority.
Shared decision-making focuses on informed collaboration between capable patients and providers. In contrast, supportive decision-making centers on maximizing autonomy and dignity for individuals with cognitive limitations, recognizing that decision-making capacity exists on a spectrum. “In clinical practice, both models may be used depending on a person’s cognitive status and support needs, particularly in progressive conditions like dementia,” observes Ladin.
Formal ethics support can be helpful in complex cases involving uncertainty about decision-making capacity, conflicts between caregivers and patients, or life-limiting interventions. Ethicists can assist in these ways, says Ladin:
- by clarifying the legal or ethical proxy decision-maker;
- by guiding clinicians to disclose risks in ways that respect dignity, context, and relational dynamics; and
- by supporting policy development for dementia-specific consent practices and decision aids.
It is important for clinicians to keep in mind that a dementia diagnosis does not mean that a patient has completely lost the ability to participate in decision-making about their care. Patients with early-stage dementia may retain the capacity to make decisions. “It’s often the case that decisional capacity fluctuates in such patients. Ongoing, rigorous assessments of decisional capacity with the expert help of neurologists are important, ethically speaking,” says F. Daniel Davis, PhD, HEC-C, associate chief of clinical ethics and professor of bioethics at Geisinger College of Health Sciences.
A patient with some retained capacity should not be deprived of the chance to participate in care planning, adds Davis. A patient without capacity should be represented by an ethically, legally appropriate surrogate decision-maker. “Ethics consultants can help physicians and other healthcare team members navigate care processes with patients with dementia and ensure that the right balance between protecting the patient and honoring their autonomy is struck,” says Davis.
Decision-making about surgery in the context of dementia is a fraught experience for clinicians, patients, and their care partners. “Little is known about how people living with dementia and their care partners navigate these decisions,” says Rachel Adler, ScD, RD, a research scientist at Brigham and Women’s Hospital. Adler and colleagues interviewed 11 patients with dementia and 36 caregivers who had faced a surgical decision in the previous two years.2 Some key findings:
Caregivers felt burdened by having to make the “right” decision for patients who were not able to participate in decision-making. For many of those caregivers, the problem stemmed from a lack of data on what the most likely outcomes might be. Clinicians can help by providing data from scientific literature, or examples of outcomes they have seen with their own patients. ”Ethicists can play an important role in helping caregivers navigate decision-making in this context by helping caregivers think through the historic and current goals and values of the patient and placing those within the context of the ‘what ifs’ of the decision,” says Adler.
Caregivers reported decisional regret in cases where the decision did not align with what the caregiver thought the patient would have wanted. Sometimes caregivers make decisions to pursue surgery to prolong the patient’s life, even though the caregiver recognizes that the patient would not have chosen surgery. One caregiver stated, “ … she would not have chosen a surgery, because she never chose surgery. In fact, this surgery might’ve been the first time she’d ever been under anesthesia. … I probably should have listened to my mother more.”
Caregivers experienced decisional regret when they struggled to reconcile what the patient currently is saying compared to their historical values. One caregiver described experiencing regret because she pursued surgery (which is what the patient wanted), while at the same time recognizing that pursuing surgery resulted in the patient living in a nursing home (which the patient wanted to avoid). “Sometimes, recognizing the potential outcomes of the choices and being able to say, ‘I did the best I could with the information I had’ can help reduce the likelihood of decisional regret,” says Adler.
Patients and care partners prioritized quality of life, but defined it in a variety of ways. “This speaks to how important it is for clinicians to probe deeper during the surgical decision-making process, to understand what activities are meaningful to the patient,” emphasizes Adler. It is important for clinicians to recognize, that even if patients living with dementia lack capacity to consent, they still can participate in the decision-making process by sharing their goals and values, says Adler. An ethics consult can be helpful in these situations, according to Adler:
- if a patient’s previously documented wishes contradict their current goals;
- if a patient’s involved family members have differing opinions on what decision they should make; or
- if a surgeon feels that their clinical recommendation greatly differs from the patient or family’s wishes.
In some cases, the surgeon thought that surgery was not the right choice, but the patient or family was adamant about pursuing surgery. In these cases, surgeons sometimes described feeling moral distress. Some declined to operate, while worrying that the family would simply try to find a different surgeon who would operate. Ethics involvement can help in such cases. “Ethicists can help the involved parties step back to see the bigger picture and better navigate the care decision,” says Adler.
Stacey Kusterbeck is an award-winning contributing author for Relias. She has more than 20 years of medical journalism experience and greatly enjoys keeping on top of constant changes in the healthcare field.
References
1. Porteny T, Lynch M, Covaleski A, et al. Medical decision-making experiences of persons with dementia and their carepartners: A qualitative study. BMC Palliat Care. 2025;24(1):99.
2. Adler RR, Chunga RE, Centracchio JA, et al. Patient and caregiver experiences with surgical decision-making in the context of dementia. Ann Surg. 2025; Sep 12. doi: 10.1097/SLA.0000000000006936. [Online ahead of print].
