Dementia and Cancer Care: Frequent, Evolving Conversations Help Ensure Appropriate Care


Caregivers become increasingly important in medical decision-making for patients with dementia and cancer.

Age is a leading risk factor for both cancer and dementia, meaning patients with both conditions may need special consideration when making treatment decisions, as they may rely more on caregivers to determine treatment. Additionally, research shows that people with dementia tend to be diagnosed with cancer at later stages and have poorer outcomes for cancer and more hospitalizations.

Quote: "We know that patients with dementia start to lose their ability to describe symptoms... so that complicates treatment decisions." -Dr. Nicole Fowler on a background of a doctor talking to a patient

In an interview with CURE, Dr. Nicole Fowler discussed the importance of ongoing treatment conversations for patients with dementia and cancer.

“We know that patients with dementia start to lose their ability to really describe symptoms in a way that somebody else would, so that complicates treatment decisions,” Dr. Nicole Fowler said in an interview with CURE®. “It makes it really hard for both patients, families and providers to (determine) what the right (treatment) path is.”

Fowler, who is an associate professor of Medicine at Indiana University School of Medicine and associate director of the IU Center for Aging Research at the Regenstief Institute, discussed her recent research on how dementia complicates cancer care in an interview with CURE®. She emphasized that in this patient population, family caregivers become even more important.

Dementia may cause limitations in patients’ ability to complete their activities of daily living, including self-care. That can be compounded by side effects and complications of cancer treatment, which can add to both the physical and emotional stress of caregiving — especially when it comes to medical decision-making and balancing the risks versus benefits of certain treatments.

“While we need to be careful of any disparities in care that may be a result of people with dementia being marginalized or stigma(tized), there is also a recognition that goals of care change, and families oftentimes need to have those really meaningful discussions about patient goals … regarding cancer screening and patient care,” Fowler said.

Fowler said that it is important to honor patient wishes regarding cancer care and to involve them in medical decision-making for as long as possible. However, as dementia causes increased cognitive impairment, family members may need to step in and help. This oftentimes occurs as an evolving discussion with the patient being involved early but with the caregiver being surrogate decision maker later.

“Having these discussions earlier rather than later is really important, and sometimes that means setting the stage,” Fowler said. “For example, while a patient may have always been diligent about mammograms, there needs to be an evolving conversation about when does that (start to have) less benefit for the patient and potential higher risks and harms?”

Regarding cancer treatment, again it is crucial to have goals-of-care discussions early and often, and also to consider symptom reduction and quality of life as well.

“So (treatment) may look really different for a 72-year-old than it might for a 52-year-old, and that’s the point I’d like to see more: an incorporation of geriatric evaluations in the treatment and planning of cancer screening and care,” Fowler said. “We want people to get appropriate care based on their values and life expectancy, so it’s really a double-edged sword of ensuring that people not only get the best care, but the most appropriate care.”

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