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Utah researchers find caregivers' attitudes critical in Alzheimer's disease progression

Published: Saturday, Jan. 19 2013 11:43 p.m. MST

Leonard Romney kisses his wife, Kathryn, at the end of a song while dancing at the Murray Arts Centre on Tuesday, Jan. 15, 2013, in Murray. Leonard cares for Kathryn, an Alzheimer's patient.

Ravell Call, Deseret News

SALT LAKE CITY — Utah is making some headway in Alzheimer's research, finding that caregivers can do more to slow the progression of the disease than previously thought.

New results from Utah State University's Cache County Dementia Progression Study show that how constructively caregivers approach the problems generated by Alzheimer's and other forms of dementia can promote higher functioning among those who suffer.

"This study is a groundbreaking event in the fight against dementia, including Alzheimer's, which has been so pervasively devastating for individuals and families, especially given the limited treatment options for patients and their families," said JoAnn Tschanz, psychology professor at USU and lead author on the study.

"Except for psychiatric symptoms, few studies have examined how caregiver characteristics affect the rate of dementia progression, and our findings indicate significant associations between caregiver coping strategies and the rate of cognitive and functional decline in dementia," Tschanz said.

Coincidentally, University of Utah researchers are on the cusp of developing a smartphone and tablet computer application that will help caregivers know how to handle specific situations, perhaps lending a hand to better coping strategies.

Salt Lake City's Leonard Romney tries to stay busy with his wife, Kathryn, who, at 70, has dealt with an Alzheimer's disease diagnosis for 3½ years. Looking back, however, he said they can pinpoint signs of the disease as early as 2003.

Alzheimer's, as usual, has been a gradual intruder on the couple's lives, but they still are able to spend quite a bit of time together. He tries to make it as positive an experience as possible.

They read, paint, exercise, travel the world and attend ballroom dance sessions together, among other daily household tasks.

Leonard Romney, 73, said it keeps them both happy amid the challenges of a slowly debilitating disease.

"The way Alzheimer's destroys is that it just nibbles bit by bit by bit over a long period of time," he said. "Day to day, you don't see changes. It takes minor adjustments. Over a period of time, the caregiver has to take over virtually all of the necessary tasks of the home."

The biggest issue he's faced is sensing his own shortcomings in dealing with the pressures of being a caregiver. For help, he attends support groups and stays in contact with a number of people also dealing with Alzheimer's in their own families.

"You have to be patient and kind and careful in what you say," Leonard Romney said. "It is a high-pressure professional calling that has been good most of the time."

Alzheimer's disease and related dementia affect one in eight people over age 65 in the United States, according to the Alzheimer's Association. With a growing population, increasing life expectancy and an influx of people moving to Utah, a shortage of caregivers is a main concern for the coming years.

Utah has the highest prevalence of Alzheimer's in the nation, as well as a 127 percent projected growth rate for the next 12 years, according to the state action plan for the disease, which was published in 2012.

The plan states that families provide almost 80 percent of care for Utahns living with the disease, estimated to be worth $1.8 billion annually. The state also incurs huge costs in managing the complexities of dementia. With the proper support, families could help save the bottom line, as well as cope better with family members with the disease.

"The caregiver has a huge influence on the person with dementia," Tschanz said, adding that it is often the caregiver who plans out each day.

She said data suggest community support agencies are not utilized as much as they could be, and that getting people in touch with such options would be beneficial, as the organizations can help with some of the problem-solving.

Tschanz's research stems from the Cache County Study on Memory Health and Aging, in which more than 5,000 county residents have been tracked for than a decade. Her current work, which is funded by the National Institute on Aging, assessed 226 individuals who had developed dementia during the study period and their caregivers.

"We found there is tremendous individual variability in how fast people decline," Tschanz said. "We want to know what impacts that decline in mental health."

The research, printed in January issue of The American Journal of Geriatric Psychiatry, suggests a person's environment is a key factor in the degradation of the disease over time.

Overall health conditions, diet and nutrition, and basic demographics are environmental factors that can play a part in the outcomes of Alzheimer's disease, but so do a caregiver's coping mechanisms.

Positive coping strategies, Tschanz said, include problem-focused coping, seeking greater social support and counting blessings. Each helps to slow patient decline.

On the other hand, research found that caregivers who focused on negative coping strategies — such as avoidance, blaming themselves or others, and wishful thinking — resulted in more rapid decline in a patient's cognitive and functional measures, she said.

"If we could slow the progression of Alzheimer's and other dementias, there could be a huge cost savings, but there are also beneficial effects for loved ones," Tschanz said. "Caregiving in itself can be very stressful. It can take a toll on the caregiver's health. Being able to promote higher level of functioning over time would allow individuals to stay in their homes at lower costs to the family and the community."

The Romneys' children are quite supportive of their parents' plight and take turns hosting their mother in their homes, giving dad some time away from it all.

And the Romneys are very open about the situation.

Kathryn Romney, a former teacher of the year for the Salt Lake City School District, straightforwardly announced her condition from the pulpit at church, hoping to foster an open conversation with others about her disease.

"They all felt like they could talk to us. There was no need to whisper behind our backs," Leonard Romney said.

The candidness helps them both, as others provide much-needed support and occasional advice, something they have grown to depend upon.

"Many people would not be able to tell there are difficulties," he said. "It's just not possible for her to do all the things she used to do."

E-mail: wleonard@desnews.com, Twitter: wendyleonards

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