Pat Callone knows firsthand the responsibilities and challenges of being a caretaker for a loved one with Alzheimer's disease.
Callone's been through the mental and emotional challenge of being a caregiver, not once, but three times. First was with her mother, Florence Callone, then her aunt, Clara Gryva, and, finally, her father, Mac Callone.
All together, Callone served as the critical support system for three people whose mental conditions were deteriorating from 1986 through 2004. The task, she said, took a toll.
But she's taken the experience and in recent years co-written books and led caregiver support groups. And now she's helped with the development of a new Alzheimer's caregiver program recently unveiled by Omaha-based Home Instead Inc.
The new training program will help to change how the company's legions of in-home caregivers around the world interact and care for patients with degenerative neurological diseases.
Dr. Jane Potter, an adviser on the program who works out of Home Instead's Center for Successful Aging at the University of Nebraska Medical Center, said she's unaware of any other senior-care programs that use similar methods. Potter was one of eight experts who helped develop and tweak Home Instead's training program.
“To us, this represented a major innovation in its approach,” Potter said. “They found out what works and pulled it together into a training program with a focus on enriching lives and making life as full and enjoyable as possible.”
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The 10 signs for detecting Alzheimer's disease
» Memory loss that disrupts daily life
» Challenges in planning or solving problems
» Difficulty completing familiar tasks at home or at work
» Confusion with time or place
» Trouble understanding visual images and spatial relationships
» New problems with words in speaking or writing
» Misplacing things and losing the ability to retrace steps
» Decreased or poor judgment
» Withdrawal from work or social activities
» Changes in mood and personality
Source: The Alzheimer's Association
For the last decade, Home Instead had used an Alzheimer's training program that the company's president and chief operating officer, Jeff Huber, described as “clinical.”
It was too medical, too complex, he said.
“We knew it was time to evolve that training,” said Huber. “Alzheimer's is starting to reach epidemic proportion. Between 40 and 60 percent of our clients have some form of dementia, and a good majority of those have Alzheimer's.”
Right at Home, an Omaha-based competitor to Home Instead, also has a high percentage of its patients who have dementia or Alzheimer's.
Right at Home uses customized services to meet the specific needs of individual clients, said Mike Flair, a Right at Home director.
The company's services include an online dementia program that helps caregivers and family members learn about degenerative cognitive diseases and understand what their patient or loved one is going through.
Both companies aim to keep senior citizens in their homes longer by providing caregivers who assist with various levels of nonmedical care. Right at Home, founded in 1995, has more than 200 franchises in the United States and three other countries. Home Instead, founded in 1994, has more than 900 franchises in 17 countries.
With the elderly becoming an increasingly larger part of the population, Home Instead officials set out to develop a program that trains family members to use a patient's healthy, long-term memory to help deal with stressful situations like refusing to eat or bathe, aggressive behavior, wandering or sexual inappropriateness.
The program uses a detailed life journal to catalog and describe the life history and stories. Using those kind of details to mentally engage and stimulate a patient with Alzheimer's or dementia, Huber said, reduces stress and makes life more manageable and enjoyable.
Say, for example, there's a patient with a military background who was having difficulty bathing or getting dressed. Since the military detail would be included in the journal, Huber said, a caregiver would know to say that the commanding officer was coming by for a visit and he has to get ready, on the double.
So instead of arguing or struggling with a patient, caregivers can use the information to essentially trick the patient into doing what is needed.
“Rather than forcing someone into a bathing situation, which becomes a stressful situation, it's using that information to redirect them,” Huber said.
The training for families is free and is conducted online and through Home Instead's global senior care offices. Franchise owners also are starting to offer free live training sessions for families, some of whom may become Home Instead clients. All franchise owners are to have the training in place by the end of this year.
The two-year development process was a huge investment, Huber said. He declined to give a cost figure but said the training equips franchise holders and caregivers with valuable skills that justify higher fees.
Added prices charged to clients are based not on a dementia diagnosis but rather on behaviors that the caregiver would encounter, Huber said. It's up to each franchise holder to set prices, which vary widely from city to city.
Even at an increased price, he said, providing appropriate Alzheimer's services in a person's home can be cheaper than a residential facility and has other advantages, such as familiar surroundings.
Callone, who has had much of her life consumed by Alzheimer's disease, says Home Instead is “providing an outstanding service.”
When she first became responsible for caring for her mother, she had no clue what techniques she should use to communicate with and help her mom. At the time, she said, she could have used a program like Home Instead's.
When she started caring for her mother, she would grow angry and frustrated. Her stress levels increased and her happiness slipped. But her friends and advisers in the medical field all had one resounding message: Take care of yourself first.
“It's like on airlines, they always say: ‘If there's going to be a lack of oxygen, put the mask on yourself first and your family and children later,' ” she said. “You've got to keep the caregiver healthy.”
Callone also recalled some of the enjoyable times she had with her father in his last months. Sitting in a sun room at her west Omaha home, she gazed at an old photo of her mother and father.
Her father had grown weak and wasn't able to eat. But there was nothing that brought a bigger smile to his face than an ice cream malt, Callone said.
So instead of abandoning the ice cream treat, Callone met him halfway, getting the ice cream and feeding it to him through a big, plastic syringe.
Those are the very instances, she said, that the Home Instead program is working to support.
“He loved it. He'd smile and it would make me happy,” Callone said. “We tried to turn that coin and say, ‘What's going to make you happy and what's going to make the other person happy?'
“Many people concentrate on the losses, but to live with it, a caregiver can't constantly be grieving inside.”
Contact the writer: 402-444-1414, firstname.lastname@example.org, twitter.com/rossboettcher
World-Herald staff writer Steve Jordon contributed to this report.