A dementia diagnosis is not only extremely difficult for the patient, caring for a loved one with memory loss can take a tremendous toll on the caregiver. Dementia is an umbrella term for a set of diseases that cause loss of brain function. Alzheimer’s disease is the most common form of dementia.
Caregivers are hugely important for those with memory loss because the process is a frightening one, says Susan Gordon, manager of Sixty Plus Adult Services at Piedmont Fayette Hospital.
“Most of the time, when people are diagnosed with dementia, or even before they get the diagnosis, they’re aware that they’re changing,” she says. “They’re losing their faculties, some of their judgment and their independence.” Caregivers may experience a range of emotions, including grief and isolation, as they learn to cope with their loved one’s disease.
Grief
Even though the loved one with dementia is still alive, it is normal for the caregiver to grieve. “It feels like the person they love has been stolen by the disease,” says Gordon. “They go through the stages of grief and loss, but yet the physical presence of that person is still there, so it’s really hard.”
Isolation
Family members of those with memory loss may also feel isolated, particularly because of the stigma associated with dementia. “People don’t like to talk about it, so some caregivers are uncomfortable bringing the person with dementia outside the home,” says Gordon. “They become more withdrawn and isolated, which can lead to a lot of loneliness.”
A demanding role
As dementia progresses, the role of the caregiver becomes increasingly demanding. In the early stages of the disease, the caregiver may perform simple tasks, like helping their loved one remember doctor’s appointments and medication. During this early phase, it is crucial for the patient and family to get their legal and financial affairs in order. “When the person with dementia still has their mental capabilities, that’s when you would want to get that paperwork signed for things like power of attorney for health care and advance directives,” explains Gordon.
As the disease progresses, the caregiver’s responsibilities increase and may include driving, bill paying, cooking and housework. In later stages, the caregiver will likely have to provide significant hands-on assistance in the activities of daily living, like bathing, dressing and eating.
Education
Education is crucial for caregivers. “It helps a lot to understand what the disease is and what to expect,” says Gordon. To assist caregivers in their role, Piedmont offers day-long workshops at its Atlanta and Fayette campuses.
These workshops feature experts such as an elder care attorney who can discuss necessary paperwork and power of attorney for those with dementia, and neurologist to discuss the role of medication in treating the challenging behaviors that a person with dementia might experience.
Caregiver support groups also meet regularly. “If a caregiver can go to those workshops or come to a support group like we have at our hospital every month, that’s a great opportunity for them to learn more about what’s going on and to understand the illness,” says Gordon. “They can also get support and share ideas and stories with other caregivers.”
For more information, visit Sixty Plus Older Adult Services.
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