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Families face personal struggle with Alzheimer's

When her father developed dementia two years ago at age 68, Julie Rice thought she was prepared to handle it.

She helped her parents move out of their house and into a more manageable apartment. She researched all the local services.

But when her father reached the point of needing more care, things began to unravel. Moving into a memory care unit in July left him disoriented and uncooperative. The Rices were told he needed to be placed in a psychiatric hospital -- but there was no place nearby that had an opening.

The stress was far more than she ever imagined, Rice said.

"I felt like we were planning. I thought the place we had chosen would know how to care for him. I thought we were doing things right but I didn't realize how few places there are and the choices we had."

It's not an unusual story, and it underscores the challenges families face when their world is invaded by Alzheimer's disease and related dementias, say those who work in the field.

"It affects whole families. Your whole life changes," said Judy Berry, executive director of the DementiaCare Foundation.

An estimated 5.3 million Americans have Alzheimer's disease, according to the Alzheimer's Association. As the older population continues to grow, this number is expected to rise. Some projections put it at 7.7 million by 2030.

Many communities are trying to position themselves for the future. Bev Werder, the owner of Compassionate Care, says local services for people with dementia are much more numerous and diverse than they used to be.

"I think we're rich with an abundance of services here," she said. "I think we've made big strides."

A 2-year-old statewide initiative hopes to accomplish even more by providing communities with education and resources to help them become more dementia-competent.

For many families, though, the struggle remains personal, quiet and invisible.

Millions of them, like Rice, take on the caregiver role only to quickly learn how all-encompassing it can become.

Burnout is a serious risk for many of these family members, said Werder. "They want to keep ownership of their loved one and they give 125 percent. Sometimes they hang on a lot longer than they should."

Berry, who founded Lakeview Ranch in Dassel, which specializes in dementia care for older adults with challenging or aggressive behavior, said nearly three-fourths of those on the facility's waiting list are there because of a crisis.

Families can be extraordinarily reluctant to seek help soon enough, she said.

Berry knows this from personal experience. Her mother had Alzheimer's disease but Berry had trouble accepting how severe it was -- until her mother ended up in the hospital after accidentally overdosing on her medication.

"Then that decision was taken out of my hands," she said. "You need to know what your limitations are. I think the general population doesn't understand that. Spousal caregivers are the hardest to deal with because of the guilt."

Although consumers are becoming savvier about finding services and resources, there are still many barriers, she and Werder said.

For one thing, there's no standard solution because every family's needs are different. For another, not all services are alike.

Nursing homes aren't the same as assisted living, Berry said. Not all memory care programs are alike either; some, for instance, might not admit someone who has aggressive behavior or someone who needs a higher level of care.

Openings can be limited, forcing families to wait or to find a different facility. Cost can be an issue too, especially for families unable to pay for in-home or specialized services.

Rice said she struggled to figure out the options. Would her father be better off in assisted living or in a nursing home? Should he be placed on more than one waiting list? How do you choose a quality program?

"You can't give someone a canned answer for how they should deal with it," Berry said. "I think we need to be better at teaching people what to ask. Don't be afraid to push."

One of the first things Rice did was to connect with a local support group.

"I learned a lot just from the books and DVDs," she said. But the most valuable advice came from a caregiver whose husband had early-onset Alzheimer's, she said. "It was somebody who had already been there."

Her own experiences led her to establish an action group of family caregivers who stay in touch through e-mail, swapping advice and sharing frustrations, griefs and triumphs.

Rice said it's her goal to prevent other families from having to deal with some of the same difficulties she did.

These days, life is still uncertain. She's not sure how rapidly her father's dementia will progress nor what the next months or years might be like.

But her father now lives in a different facility where he has settled in and where she visits him three times a week.

"I have a better relationship with my dad now than I ever did before," Rice said. "It is just pure love now."

Anne Polta

Anne Polta covers health care, business/economic development and general assignment. Her HealthBeat blog can be found at Follow her on Twitter at @AnnePolta.

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