Disease-Specific Care

When your loved one’s health needs require specialized caregiving 

Imagine that someone you love has cancer, Alzheimer’s disease, or another condition that requires specialized care. Do you learn how to care for them, or do you find someone trained in the care they need?

Family caregivers are often untrained and unpaid  — but they also tend to be the first line of defense.

In its 2022 report, the National Alliance on Caregiving reported that 57% of America’s family caregivers provide healthcare services — giving injections, tube feedings, catheter and colostomy care, and other complex care responsibilities. Many caregivers manage medication (46%) and medical-related transportation (78%).

This large number of people would benefit from either caregiving assistance from professional caregivers who may be more familiar with the medications and challenges of a disease, or they may benefit from training specific to their loved one’s complex condition. Some care facilities even offer dementia-specific units called memory care because the needs of people with memory issues differ significantly from typical aging needs.

Training family caregivers

City of Hope — a national network of oncology hospitals and outpatient care centers with locations in California, Arizona, Illinois, and Georgia — provides this kind of guidance to caregivers and patients, through their Cancer Fighters program.

“When you or a loved one is diagnosed with cancer, it might feel like no one understands what you’re going through,” says Jen Mikes, Cancer Fighters manager of patient loyalty. “Cancer Fighters supports and connects you with someone who has faced the same fears and asked the same questions as you.” 

These volunteer patients and caregivers help with fear of the unknown and offer advice and ideas, allowing those seeking support to be better equipped through their cancer and caregiving journey.

Usually, after the patient and caregiver have returned for follow-up visits and treatments, care needs start to change, and emerging care needs begin to surface. This often depends on the type of treatment the person goes through and how they respond to treatment. At City of Hope, behavioral health staff review the caregiver’s new role and responsibilities, from basic day-to-day caregiving to managing medications.

“Caregivers are encouraged to allow the patient to do as much of his or her regular routine as possible,” says Alexandria Callahan, therapist and behavioral health department leader at City of Hope. They must be cognizant of the person’s independence and abilities. “Many patients express a desire to still be in control of something, even if it’s what we see as a simple task of tying their shoes, washing dishes, or getting a glass of water.”

Calling for back up

But when the responsibilities become too difficult for the family caregiver, finding professional, paid care may be the next step. Many people with dementia rely on family members for caregiving in addition to paid care, according to the nonprofit research group Population Reference Bureau.

57% of America’s family caregivers provide healthcare services — giving injections, tube feedings, catheter and colostomy care, and other complex care responsibilities.

When hiring professional care, finding a caregiver that is certified or specialized in the person’s disease can be most beneficial for the patient and the family. Olivia Matongo, vice president of programs for the Alzheimer’s Association Illinois Chapter, suggests asking what type of training the professional caregiver received. 

“If they don’t have a certification in essentiALZ (a training and certification program through the Alzheimer’s Association), [the family] can always arrange for their caregiver to take the training,” she says. “The benefit [of this program] is that the caregiver provides the necessary care and support, which is considered best practice for the person living with dementia.”

Getting care from a trained and certified caregiver provides the person with a skilled professional, knowledgable in evidence-based, person-centered care, Matongo says. “The training program covers five critical areas of the Dementia Care Practice Recommendations, including the basics of Alzheimer’s and dementia, person-centered care, assessment, care planning, activities of daily living, and behaviors and communication.”

In addition, the Alzheimer’s Association offers educational programs to the general public, such as Understanding Alzheimer’s and Dementia; Dementia Conversations: Driving, Doctor Visits, Legal & Financial Planning; and Living with Alzheimer’s for Caregivers.

Finding an appropriate caregiver is a highly personal decision: The right person will have skills in a specific disease or be willing to train and acquire them. Look for qualities such as patience and scheduling flexibility as well, and a willingness to work with your family as a true partner in your loved one’s care. 

Originally published in the Summer/Fall 2023 print issue.