Improving Support for Families When a Loved One with Dementia Needs Surgery

When someone living with dementia is considering surgery, there is a lot to consider before moving forward. While a procedure may relieve pain or treat a chronic medical condition, people with dementia also have a higher risk of post-surgical complications and prolonged recovery. 

For both patients and family members helping with recovery, a potential surgery comes with many questions. One key question that often comes up is: Will this surgery actually improve my quality of life, or will it just make things harder? That’s not straightforward to answer. 

As the associate director of Hebrew SeniorLife’s Hinda and Arthur Marcus Institute for Aging Research, I wanted to learn how families make these decisions and what clinicians can do to better support them. To understand why this matters, it helps to look at why deciding whether to get surgery can be especially complicated for people living with dementia. 

Why dementia complicates surgical decisions 

When families are deciding whether surgery is the right choice, a dementia diagnosis adds multiple layers of complexity. Surgery may carry greater risks, and caregivers are often left to make deeply personal decisions on their loved one’s behalf.  

While surgical risks should be carefully considered for any person considering surgery, dementia introduces additional factors that can worsen surgical outcomes and make recovery more complicated. Pain management, functional status, and the ability to participate in rehabilitation can all impact outcomes for people living with dementia.

Dementia is also closely linked to delirium. People living with dementia are more likely to experience post-operative delirium, which can make recovery more difficult. Delirium can limit a person’s ability to participate in rehabilitation and affect cognitive health for months after surgery. 

What matters most to families facing surgical decisions 

I was part of a research team that conducted a study examining how people living with dementia and their caregivers make surgical decisions. We spoke with individuals who had faced these choices in the past two years.  

This work is important because we don’t know much about how people affected by dementia make choices about surgery. Gaining a deeper understanding of patients’ and caregivers’ experiences is an important first step toward improving how clinicians can support families in this situation.

Through these conversations, we identified several key themes. One priority that emerged for people living with dementia and their caregivers is quality of life. Study participants emphasized outcomes such as functional status, mobility, activity level, and maintaining independence. Caregivers often prioritized preserving their loved one’s dignity and minimizing suffering.

At the same time, making these decisions was challenging because families struggled to anticipate the risks and benefits of different treatment options. Without clear surgical outcomes data for people living with dementia, caregivers had to piece together what surgery and recovery might look like — balancing potential surgical risks with the likely impact of the surgery on both their loved one with dementia and themselves. 

When surgical decisions fall to caregivers

In some cases, people living with dementia may not have the capacity to participate in the surgical decision-making process. That can leave caregivers in the position of deciding whether their loved one should undergo surgery, which can be emotionally and morally challenging.

In our conversations with caregivers, some expressed regret after the decision to pursue surgery if the outcome did not align with what they believed their loved one would have wanted. For example, someone might feel regret if a person experiences confusion, delirium, worsened cognitive impairment, a difficult recovery, or a poor surgical outcome.

Sometimes, families have had advance care planning conversations well before surgery. However, a person’s cognitive status and priorities can change over time. In most cases, the default should be to listen to and respect the patient’s current preferences, as statements made before dementia developed may no longer reflect the patient’s present values or goals. For example, a patient who previously said, “I would undergo surgery if it could cure my cancer,” may later say, “I don’t want surgery because I dislike being in the hospital.” In that situation, the patient’s current preference should be respected.

On the other hand, a patient with dementia may request surgery for a goal that is less achievable. For example, someone may say, “I want surgery so I can travel alone again.” If that outcome isn’t realistic, the decision may need to rely more on the family’s understanding of the patient’s longstanding values and preferences before the onset of their dementia.

Importantly, what brings meaning and joy to a person often changes over time. Someone who once traveled widely may now find deep happiness in simple experiences, such as enjoying a slice of cake with a family member. Decisions should be guided by a thoughtful consideration of their current well-being and the sources of meaning in their life today. 

How health systems can better support families 

Understanding how people living with dementia make surgical decisions can help clinicians better support families making these choices. But what would that look like in practice?

In a follow-up study, we spoke with a panel of experts — including surgeons, clinicians, researchers, policy experts, and people impacted by dementia. They evaluated potential recommendations based on both importance and feasibility for clinical practice, policy, and future research. Our findings highlighted gaps between what should be done and what is feasible.

The panel of experts identified multiple top priorities for improving care, including providing better information for patients and caregivers and improving surgical guidelines for people living with dementia. Both of these priorities ranked highly in feasibility and importance.

Providing clearer educational materials about how dementia can affect surgical decisions, outcomes, and post-operative needs could help address many caregiver and patient concerns. For example, families often want better information about the tradeoffs of pursuing or foregoing surgery and the potential intensity of post-surgical recovery and rehabilitation.

Improving clinical guidance for surgeons is another important step. The Geriatric Surgery Verification guidelines have 32 standards to improve surgical care and outcomes for older people. However, they do not provide any guidance on decision-making with people living with dementia and their caregivers. Updating these guidelines to include requirements for dementia-specific training for surgeons would be valuable.

Experts also identified multiple additional priorities, including consultations between referring providers and surgical teams, fully-informed patient consent for unplanned surgeries, and visits between surgical consultations to discuss and process what was said. However, some of the priorities may be more difficult to implement due to limited time, staffing, and resources. 

Improving data on surgical outcomes in dementia 

One challenge caregivers and people with dementia identified was a lack of data around surgical risk. Families may be informed that there is a “high risk” of a complication. Still, we don’t often have specific numbers that reflect the risks for people living with dementia undergoing particular procedures.  

As a researcher, I am exploring that area further. If physicians can offer clearer estimates — for example, explaining that a specific procedure carries a 20% risk of functional decline or delirium for someone with dementia — patients and caregivers can make more informed decisions about whether surgery aligns with what matters most to them.

Ultimately, improving data on surgical outcomes for people living with dementia would help clinicians provide clearer guidance and help families better weigh the potential risks and benefits of surgery. 

Moving toward better-informed surgical care 

As our population grows older, more families will face complex surgical decisions that involve dementia. Improving how clinicians, patients, and caregivers navigate these choices will require better data, clearer guidance, and stronger support throughout the decision-making process.

At Hebrew SeniorLife, researchers at the Marcus Institute are working to address the most pressing challenges of aging. By studying issues like surgical decision-making in dementia care, we aim to generate research that informs clinical practice and improves the quality of care and life for older people.