Caring for a cancer patient with cognitive impairments: Use this advice

Caregivers of cancer patients with cognitive impairments can face any number of unique challenges.  

If their loved one has memory issues, for instance, they might need more help than usual with remembering medical appointments, medication schedules, or what doctors have said. Patients with other types of cognitive impairment, meanwhile, might need a little more time to understand questions or come up with appropriate answers. 

So, how do you meet patients where they are and honor them as people, while also finding ways to balance their care with your well-being? We went to neuro-oncologist Ashley Aaroe, M.D., for advice.   

Age doesn’t matter

The first thing to know about cognitive impairment among cancer patients is that age doesn’t really matter.  

“People with cancer can have cognitive impairment of many types, even if they are very young,” notes Aaroe. “These may be due to the cancer itself or to its treatments or side effects. Much more important than a patient’s age is the type of cognitive impairment they have.” 

Just a few categories of cognitive impairment include: 

• Memory deficits (names, events or experiences) 
• Executive dysfunction (trouble with planning or decision-making) 
• Language difficulty 
• Difficulty with attention 

“But those are far from the only ones,” notes Aaroe. “Patients can have a variety of symptoms that all fall under the category of cognitive impairment. Some types can cause memory trouble, such as the kind seen in Alzheimer’s disease, but others appear very differently.” 

Get out ahead of the issue, if possible

One of the most important things for caregivers to do is to mention any possible concerns quickly because some cognitive issues can get progressively worse.  

“As soon as you suspect that your loved one might have a cognitive issue, alert their care team so that they can look into it,” advises Aaroe.  

It’s also important to start a conversation with your loved one about advance directives and other preferences as soon as there’s a triggering event.  

“You don’t want to wait and then feel rushed because you’re running out of time or, worse, find yourself in a position where you don’t feel equipped to help make those decisions should you be asked to,” she adds. 

Broach the awkward, but necessary, conversations

Starting these conversations can be awkward and difficult, Aaroe says. But it’s vital to have them while your loved ones can still verbalize their thoughts. That way, you can honor who they are and what’s important to them, if ever they can’t.  

“I wish it were more culturally acceptable to say, ‘Hey, I don’t think anything’s going to happen to me any time soon. But someday, I might not be able to express my wishes, either because of a disease or a complication. So, if that ever happens, this is what I would want,” Aaroe says. 

She notes that this advice applies not only to big things but also to small ones.  

“Before I was in medicine, I really enjoyed dance,” Aaroe says. “So, if anything ever happened to me, I’d want to make sure I was still getting to do some of the things I loved related to movement, for as long as possible. That’s important, from a quality-of-life perspective. 

Call in the experts: neuropsychology

Patients with different types of cognitive issues will need different accommodations to function well. So, figuring out precisely where someone’s challenges lie is critical. 

MD Anderson patients can ask for a referral to the neuropsychology team in the Neuro-Oncology Center. 

“This center is great for both patients with brain tumors and patients who have chemobrain or some other treatment-induced cognitive impairment,” Aaroe explains. “These doctors are experts in neurocognition, and we work closely with them to figure out the areas in which patients might be struggling.” 

There are multiple benefits to seeing a neuropsychologist: 

• They can help assess, diagnose, and manage cognitive dysfunction. 
• They can assess emotional and neurobehavioral concerns and offer recommendations to address these issues. 
• They can provide objective benchmarks to track over time, to determine if an issue is improving, remaining stable, or getting worse. 
• They can make recommendations to counterbalance whatever cognitive impairments a patient has and to help patients maximize their social, educational, and occupational functioning. 

“One example might be creating a ‘memory station’ in the house,” explains Aaroe. “This would be a centralized place where the patient always puts their keys, change, cell phone, etc. That way, patients know exactly where to look for those items whenever they can’t find them.” 

Use every resource available

If your loved one’s doctor recommends cognitive rehabilitation or occupational therapy or suggests more social activity, mental stimulation or physical exercise, don’t dismiss it. 

“Isolation, lack of mental stimulation, and physical inactivity are all associated with more rapid deterioration in people with dementia,” notes Aaroe. “So, these things play a huge role in mitigating quality of life issues associated with all types of cognitive impairment. A lot of people underestimate how important they are.” 

Manage your expectations

Most of the FDA-approved medications for Alzheimer’s disease are designed to prevent worsening or slow down someone’s cognitive deterioration, rather than to restore what has already been lost.

“But people still want there to be a pill that can fix it,” says Aaroe. “And that pill doesn’t exist. There’s no pill that will make cognitive impairment go away. So, that expectation has to be managed early on.” 

There are medications that can help manage some of the more troublesome aspects of cognitive impairment, though.  

“Mood disorders especially are associated with cognitive impairment,” Aaroe says. “And things like anxiety and depression can dovetail with it and make each other worse. But, if someone is prone to becoming agitated or having violent outbursts, for example, there are often medications that can help.” 

Take care of yourself

We can only do our best. And sometimes, it’s all just too much.  

If you’re an MD Anderson caregiver who’s having trouble coping, consider reaching out to our Social Work team.  

“There’s a tendency to want to talk exclusively about the patient, and that’s a natural impulse,” notes Aaroe. “But if you’re experiencing distress or feeling overwhelmed by the burden of caring for someone, it’s important to reach out and let their care team know. You can’t help anyone else if you’re not feeling your best.” 

Aaroe acknowledges that it can be hard to discuss your own issues in front of a loved one with cancer, especially if they also have cognitive impairments. But it’s better to ask for help before you reach a crisis point than to wait until you’ve already arrived at one.  

“When it comes to patients with cognitive impairments, caregiver fatigue can have downstream effects. In one study of patients with dementia, the frequency of visits to an emergency room was shown to be more tied to caregivers’ distress than to medical complications,” notes Aaroe. “That’s a pretty striking fact.” 

Social work counselors can intervene long before things get to that point. They can identify resources and support options that may help reduce your workload as a caregiver. And social work counselors are specially trained to help all members of a family find the support, resources and solutions they need to live their best lives.  

“Are there products or services we can suggest to enhance your mobility or the patient’s? Might you both benefit from a home health aide or cognitive or physical therapy for the patient?” Aaroe asks. “Social Work is a wonderful resource that can partner with you and your loved one’s care team to figure these things out.” 

Request an appointment at MD Anderson online or call 1-877-632-6789.