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Rehab Insights is a weekly blog written by Burke Rehabilitation professionals to offer practical information for patients, families and the community. Its goal is to educate the reader on relevant topics in rehabilitation, general health and wellness.

What Caregivers of Late-Stage Alzheimer’s Disease Patients Should Know

October 21, 2019

Caregiving for a loved one with Alzheimer’s Disease is not only important, but common. According to the Alzheimer’s Association, “Nearly half of all caregivers who provide help to older adults do so for someone living with Alzheimer's or another dementia.”

A trusted caregiver is usually designated when a patient is first diagnosed, says Pasquale Fonzetti, MD, PhD, who heads up Burke’s outpatient Memory Evaluation and Treatment Service (METS). At the start of the disease, a caregiver might be helping with simpler tasks, or to keep things like finances in order, but as the disease moves into the later stages, there’s more for caregivers to be aware of.

“Caring for someone who has progressed to a late stage of Alzheimer’s disease is a daunting task,” says Dr. Fonzetti. “Patients need assistance in all their basic needs: feeding, toileting, dressing, grooming, bathing and walking. Often these patients have limited ability to communicate with their family members and are resistive to care.”

Here are some tips we can offer to caregivers looking for advice:

Ask for help. “Most caregivers require assistance from a home aide, another family member or a devoted friend for patients in late stages of AD to avoid burnout,” explains Dr. Fonzetti. The Alzheimer’s Association also notes that, “Since care needs are extensive during the late stage, they may exceed what you can provide at home, even with additional assistance. This may mean moving the person into a facility in order to get the care needed.”

Watch for signs of stress. Speaking of burnout: “Overstressed caregivers are at risk of depression, anxiety disorder and other health problems,” explains Dr. Fonzetti. He recommends keeping an eye out for early signs of burnout, such as feeling resentful, yelling or becoming neglectful towards the person being cared for. And if a caregiver recognizes these signs, he or she should start by talking to their spouse, family or friends about how they’re feeling. “Letting it out is the best way to relieve the pressure,” he says. Plus: see your primary care physician for regular check up, maintain social and recreational activities, and take part in daily aerobic exercises. Also consider joining a support group or seeking out local resources to help.

Continue to do activities you love. Caregivers need to make sure they’re not putting themselves at the bottom of their “to-care-for” list. “The process of watching a loved one slowly decline can be extremely difficult and burn out and caregiver stress are very real. Not having healthy ways to manage your stress can take away from the positive experiences of being a caregiver,” explains Carla Assenza, LCSW, Director of the Marsal Caregiver Center. “Getting support and respite can help with burnout, and recognizing your stressors and triggers and finding some time to find joy in your life.” That might be watching a funny movie, yoga, cooking or spending time with friends, she says. “Whatever it is that you enjoy is so important to maintain on some level.”

Seek out support—and information. “I would suggest getting as much education as you can about Alzheimer’s so you can learn about the progression of the disease,” says Assenza. And both she and Dr. Fonzetti point out the importance of support groups. “Education and support are very important,” she says.

One upcoming event that can help with that: “Living with Alzheimer's for Caregivers: Late Stage.” The program is being offered at Burke and presented by the Alzheimer’s Association.

Along with hearing from other families and experts in the field, the event will cover topics including ways to communicate, daily and long-term care options, and more.

The two-part series will be held on Oct. 30 and Nov. 6 from 10 a.m. to 12 p.m. in the Rosedale Room in the Billings building on Burke’s main campus. For more information, call the Alzheimer’s Association at (800) 272-3900.

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Burke's Rehab Insights blog is intended to provide general information about rehabilitation and other health care topics. It should not take the place of medical care. Burke staff cannot comment on individual medical cases or give medical advice.

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