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The statistics are alarming: according to the Alzheimer’s Association, more than 5 million Americans are living with Alzheimer’s disease, 59,000 of them in Oregon. It is this country’s sixth leading cause of death, and one in three seniors will die with Alzheimer’s or another form of dementia.


Photo Credit: PHOTO BY: ELLEN SPITALERI - Vassar Byrd, chief executive officer of the Rose Villa retirement community, talks with Tracy Morgan, executive director of the Oregon chapter of the Alzheimer's Association.But there’s hope. Care for those with Alzheimer’s is changing, and research is underway to help understand more about this disease.

Ed and Judie Hansen moved to Rose Villa retirement community on Southeast River Road two-and-a-half years ago; Ed, who is 85, was diagnosed with Alzheimer’s five years ago.

The couple previously lived in Eugene and belonged to a dementia support group, and that’s where they were introduced to the concept of the “care partner, instead of caregiver,” Judie Hansen said.

Photo Credit: PHOTO BY: ELLEN SPITALERI - Ed Hansen, who was diagnosed with Alzheimer's five years ago, and his wife, Judie, stay active birdwatching from the window of their apartment at Oak Grove's Rose Villa retirement community.“We met once a week, and those with dementia met in one room, while the care partners met separately in another room. That way the care partners were able to talk about their concerns and get helpful hints and coping mechanisms, since there were people with partners in all stages of the disease,” she said.

Now that she and her husband of 25 years have moved to Rose Villa, they attend a support group that meets in the facility.

“Moving here was a smart move when we can still take advantage of all that Rose Villa offers,” she said.

Isolation can become a problem for those with Alzheimer’s and their partners, but “here there is no isolation,” Hansen said, adding that several times a year interns with the county’s social services department work with Rose Villa’s various support groups.

Care partners need relief

Caring for one’s partner with Alzheimer’s can be an all-consuming proposition, so respite for the care partner is crucial.

“I am fortunate that Ed has had no change in personality. He has never been angry or frustrated about his memory loss. He has no health issues except for glaucoma. I choose his clothes, plan his day, and make sure he remembers to eat. Everything moves in slow motion,” Hansen said.

Care partners “need to figure out ways to take care of themselves, and establish that early. Don’t think you have to do everything — don’t get to the point when you are desperate.”

Hansen noted that 60 percent of caregivers die first. She sees how that can happen, since she also has health issues, including Crohn’s disease, high blood pressure and depression.

With all this in mind, Hansen contacted Clackamas County’s Volunteer Connection program, an organization that provides volunteer opportunities to those who want to provide social services to members of their community.

“The gal who meets with Ed comes two days a week and spends four hours a day with him. She is 88 and can handle most anything, and the senior companion program is free to county residents,” Hansen said.

Hansen makes a point of staying busy; she is a member of the Rose Villa Foundation Board, and enjoys working in Rose Villa’s thrift shop, called the Treasure House. She gets together with a friend to make art once a month, regularly goes to lunch and coffee with another group, and works in the Rose Villa garden when she can.

“I am fortunate enough to still have friends from 25 years ago. Rose Villa has an art group that meets every Friday, and I’m part of that. It’s good to have the Rose Villa community as a support group,” Hansen said.

“My granddaughter, age 23, died in an automobile accident in August. Ed did not grasp the situation or provide any comfort, but this community was very helpful,” she said.

Caring, sharing is Rose Villa model

Rose Villa is intentionally set up as a community that cares and shares, said Vassar Byrd, chief executive officer for the facility.

It’s “strength in neighbors; that’s what Rose Villa is all about. Many others have been through the same thing. You can’t buy that kind of experience,” she said.

All the staff at Rose Villa are trained in memory care, from the front desk personnel to the housekeepers and the nursing assistants.

“We have transition meetings and discuss every individual. When a memory-illness problem develops, we get on it fast and provide support,” Byrd said, adding that it is crucial for those with memory loss to stick to a routine.

“The strength of a social routine is so important. They have a greater ability to function with rock-solid structure and a community around,” she said.

Byrd is passionate about the fact that socially, Rose Villa is not a segregated campus. She noted that in some senior living facilities, those with memory issues are housed in separate buildings and eat in separate dining rooms.

“When people all come together, they perform better. When you isolate people in memory care, they decline faster. We tell families to incorporate folks into everything they do,” she said.

Spouses often think they have to do everything for their partner themselves, and then they can burn out, but “we can lift that load. We have in-home care available to provide respite to a caregiver. We have support groups on site, and we have a counseling center with professionals to provide group and individual therapy.”

Byrd added, “You can’t allow it to take over your life; you need to take care of yourself. You have to grieve. Your partner will never be back the way they were, but you have to take advantage of the gifts you have, and don’t let grief overtake you.”

Hope lies in research

Alzheimer’s is the most common form of dementia, said Tracy Morgan, executive director of the Oregon chapter of the Alzheimer’s Association.

There is so much that is still unknown about the brain, she said, but the Alzheimer’s Association’s national plan calls for a “big push” in research to find an effective treatment by 2025.

“Hope lies entirely in research. A lot of studying needs to be done on the brain, and for that researchers need healthy brains. We help people connect with clinical trials,” Morgan said, noting that trials are being conducted locally at OHSU.

Funding research is crucial, she said, adding, “If you have a brain, you are at risk from Alzheimer’s. The association exists to help and support people affected by dementia.”

“We can connect people to resources to help themselves and a loved one. We have multiple mediums to find information, including free classes both live and online, and we can help with legal and financial planning,” she said.

The most significant resource the Alzheimer’s Association provides is its free help line, available 24 hours a day, seven days a week.

“It is staffed with clinicians who can give information and make referrals. If there’s a crisis, the line can refer callers to master-level care consultants,” Morgan said, noting that there is an uptick in calls during the holiday season, which may be the only time of the year all family members get together.

The website also contains a “wealth of information,” Morgan said, including a social networking site for those in the early stages of the disease and advice about respite care and care facilities.

“We don’t make endorsements, but we do provide resources. We have information about support groups. We offer nonjudgmental art-based classes and exercise classes. We want to make sure a care team is involved to keep people emotionally, physically and mentally active,” Morgan said.

“We all need to become more educated about Alzheimer’s and we need to allow time for caregivers to educate themselves and understand the diagnosis. Alzheimer’s can be very isolating, and people can leave a diagnosis feeling very depressed. They need to make a true partnership with the association to adjust to the diagnosis,” she said.

And there is one last alarming statistic to deal with, Morgan noted.

“Women in their 60s are at the epicenter of this disease; one in six will develop Alzheimer’s, compared to one in 11 for breast cancer.”

She added, “More than 60 percent of caregivers are women, and caregiving can be very stressful. They need to take care of themselves and get educated about respite care.”

Fast facts

Visit the Alzheimer’s Association website at alz.org/oregon, or call 1-800-272-3900 for the 24/7 help line.

For more information about Clackamas County’s Volunteer Connection programs, including the family caregiver support program and the senior companion program, visit clackamas.us/socialservices/volunteer.html, or call 503-650-5724.

For more information about Rose Villa, visit rosevilla.org, or call 503-654-3171.

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