Often called “a family disease,” Alzheimer’s seems to be “much harder on the family caregiver than the patient,” says hospice Social Worker Janice Rybar, MSW, LCSW. So when a patient with Alzheimer’s is referred to hospice, Janice makes sure the family caregiver has all the information and support he or she needs to get through the patient’s end-of-life process.

As Alzheimer’s progresses, the actual victim loses his or her memory and is unaware of what is happening. The caregiver, on the other hand, is left to watch as the victim mentally and physically deteriorates, explains Janice, who works at VITAS Innovative Hospice Care® of Broward County. As a result, the caregiver often feels helpless and ineffective.

Dealing with advanced Alzheimer’s disease can often be more difficult for the family caregiver than for the actual victim. VITAS Innovative Hospice Care® therefore focuses strongly on educating family caregivers about the disease and what it does as it progresses. It also provides as much emotional, spiritual and community resource support as possible.

“Family caregivers of Alzheimer’s patients feel robbed of their loved ones—piece by piece—until they are left with just a shell, and that’s painful and frustrating for them,” especially if they don’t fully understand why their loved one is slipping away, says Janice.

VITAS’ skilled social workers, nurses and other team members thus make sure the family caregiver understands what Alzheimer’s disease is and does. That’s what VITAS Representative and certified Alzheimer’s Educator Norma Trabanco does nearly full-time.

“To see a loved one devolve is so hard for families,” says Norma, who works at VITAS in Dade-Monroe. “The families therefore can be very demanding of the hospice care teams … their emotions are just so charged.”

Norma’s solution is to educate families and family caregivers about Alzheimer’s disease every step of the way—informing them of what the final stages of Alzheimer’s will bring and letting them know what resources are available to them. The hospice care teams then offer as much emotional and spiritual support as possible.

Live in the moment

“We try to help the caregivers understand that, to a person with Alzheimer’s, there is no past or future—there is just ‘now.’ So we encourage caregivers to try to live in the moment and flow with the changes that occur every day,” says Janice.

It can be hard for a family caregiver to accept his or her loved one’s decline due to Alzheimer’s or to surrender control of the patient’s care if, over the years, the caregiver alone fulfilled all of the patient’s needs, adds Daria Akers, R.N., a nurse with VITAS in Broward County.

“We try to help the family caregiver understand that he or she needs to ‘let go’ once the patient is on hospice,” says Daria, who has worked with Alzheimer’s patients for 20 years. “We try to help them understand that what he or she was doing for so many years was good, but once the patient is on hospice—which is when the patient usually cannot walk, talk, or even hold up his or her head—it’s time to try something else to ease the patient’s pain and discomfort.”

Caregiver burnout is a common problem, adds Nancy Auster, education specialist at VITAS in Dade-Monroe. That’s why VITAS offers respite care to give caregivers some time to themselves; patients can be admitted to an inpatient unit for up to five days, or patient care volunteers can visit patients at home.

Another common problem with patients with Alzheimer’s is they often do not have an advance directive, notes Nancy. “It can create a huge hardship on the family if the patient has not put his or her end-of-life wishes in writing, because the family is left to make decisions about the patient’s care without the patient’s input,” she says.

“It can take years for Alzheimer’s to progress to the hospice-appropriate stage, so it’s good to make plans early on—such as immediately after a diagnosis is made—so the families don’t have to guess about those wrenching decisions,” says Nancy.