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How to take better care of your loved one with dementia

Bangor Daily News (ME) - 4/30/2016

April 30--BANGOR, Maine -- When Florence Churchill's husband, Dale, was forced to stop driving a couple of years ago because his progressive dementia was affecting his judgement, memory and physical responses, she realized things were only going to get more complicated.

She was right. She was quickly overwhelmed with seeking power of attorney designation, navigating insurance regulations, assuming more daily household responsibilities and anticipating their future needs as individuals and a couple.

"I knew I needed help," the 77-year-old Bangor resident said. Fortunately, her doctor suggested personal counseling, and fortunately the counselor recommended she contact the Eastern Area Agency on Aging to see what kinds of support services might be available.

Soon after, Churchill enrolled in a Savvy Caregiver class, a free, six-week training program for family members and friends who are caring for people with dementia. Developed at Emory University in Atlanta in 2002 and endorsed by the Alzheimer's Association, the Savvy Caregiver program aims to educate family caregivers about the predictable phases of dementia and memory loss. It equips them to care more effectively for their loved ones while tending to their own health and stress. EAAA offers the evidence-based program several times a year at different locations its four-county service area. The next class is enrolling now and will start Wednesday, May 4 at Dirigo Pines in Orono. It is scheduled from 4 to 6 p.m. for six consecutive Wednesdays.

"The most important thing to understand is that this person you're caring for is not going to change, so you have to change," said Josephine Cirrinone, family caregiver specialist at EAAA and the instructor of the Savvy Caregiver classes. "In our class, you learn how important it is to let that person be where they're at. You need to meet them there, not try to make them understand things -- because they can't anymore."

For Florence Churchill, that meant learning, among other things, to defuse her bouts of frustration and cultivate a more patient and compassionate attitude. Now, when she finds herself becoming angry or speaking harshly, she said, "I just step back and walk away, get out of the situation for a few minutes. When I come back, it's over. We just start over."

Role-playing with others in the class was helpful, too, she said, allowing participants to explore different ways of responding to a given situation. "I learned ways to change my wording, to speak more kindly to him and more simply," Churchill said. "I learned to use a couple of words instead of a whole sentence when I was explaining something to him."

For Sue O'Roak, who took the caregiving course along with her husband and his sister, it meant recognizing when their loved one was "sundowning" -- a common phenomenon of pronounced confusion and agitation frequently observed for a couple of hours in the evening -- and knowing it would pass. Many caregivers in her class were familiar with the behavior, which is thought to be caused by a combination of visual and cognitive changes.

"It was so comforting to learn that this wasn't just happening to our loved one," she said.

O'Roak and Churchill learned to stave off "caregiver burnout" by caring for themselves. "I have to take care of my own medical problems," Churchill said. "I have to be No. 1, and he's No. 2, because if I don't take care of myself, we're both in trouble."

Dementia is caused by many conditions, some of which include Alzheimer's disease, Parkinson's disease and vascular changes associated with aging. Rates of dementia are not well reported, but an estimated 26,000 people in Maine are living with a diagnosis of Alzheimer's disease alone. The incidence is expected to rise with the aging of the baby boomer generation, to about 35,000 by 2025, an increase of 35 percent.

Savvy Caregiver is appropriate for families and friends of people experiencing memory loss, loss of judgement, a diminishing ability to perform routine tasks of daily living and other symptoms of dementia. A specific diagnosis is not required.

It's important to note that Savvy Caregiver isn't a support group, Cirrinone stressed, but is instead a structured class that uses workbook exercises and a planned curriculum to guide discussion and understanding. However, participants are encouraged to share their personal experiences and insights, and many find the two-hour sessions a welcome source of social contact and support. Some class members will go out for coffee to continue a discussion begun in class, she said, and some have developed important personal friendships.

The biggest challenge for some participants, she acknowledged, is finding someone to stay with the person with dementia while the caregiver goes to class. If a trusted family member, friend or neighbor is not available, Cirrinone said, EAAA may be able to suggest other solutions, such an adult day services or respite care through a homecare agency. In some cases, she said, subsidies are available to pay for professional care.

In addition to the Savvy Caregiver program, EAAA hosts caregiver support groups and provides other resources for people caring for a loved one with dementia. For more information or to register for the upcoming Savvy Caregiver training, call Eastern Area Agency on Aging at 207-941-2865.

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(c)2016 the Bangor Daily News (Bangor, Maine)

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