During the four years that Frances Kakugawa cared for her ailing mother with Alzheimer’s disease, she often found it tough to shake the feelings of fear, grief and anxiety.
But Kakugawa said it all comes down to perception.
"As a caregiver you’re in an entirely new world," Kakugawa, a former Hawaii resident, said by phone from Sacramento, Calif., where she now lives. "There’s no cure for Alzheimer’s right now, and many problems can’t be solved in medical offices, so we need to look at ourselves, change our attitude, get rid of the fear and bring in compassion. We need to give caregivers the tools to help themselves."
Ohana Dementia Support, a new program from Honolulu nonprofit Child and Family Service, strives to do just that, providing coping tools for family caregivers of those with Alzheimer’s, the most common form of dementia, and other dementia-related illnesses. The program is funded by a three-year, $150,000 grant from the Georgia-based Rosalynn Carter Institute for Caregiving.
Ohana Dementia Support will provide family caregivers with the tools to better understand and deal with their situation through individualized plans that look largely at changing caregivers’ attitudes toward dementia and their loved ones.
The nonprofit was one of five across the country to receive a grant from the institute to implement a program called Resources for Enhancing Alzheimer Caregiver Health.
"There are skills you can teach caregivers through the REACH program so that they understand and they can change the way that they’re reacting and change what they’re doing, because you can’t change what the person (with dementia) is doing," said Laura Bauer, director of national initiatives at the Carter Institute. "That will make life a lot easier for them."
Valorie Taylor, gerontology contracts manager at Child and Family Service, added, "With the REACH model, you are targeting that particular caregiver with their particular issue to give them the tools to help them feel better."
Bauer, who visited the islands late last month to train Child and Family Service workers on the REACH program, said studies have shown that caregivers who have gone through the program are less likely to want to put the person they are caring for in a nursing home or other long-term care institution.
Programs like Ohana Dementia Support that help family caregivers not only provide personal benefits to both caregivers and those receiving care, but overall economic benefits as well.
According to a 2011 report by the AARP Public Policy Institute, in 2009 the estimated economic value of unpaid contributions by all family caregivers in the U.S. was about $450 billion, with about $2 billion attributed to family caregivers in Hawaii.
"What that means is family caregivers are the true backbone of the long-term health care system in the U.S," Bauer said. "If we don’t support them with good evidence-based programs, if we don’t support them in their role, then who’s going to do it?
"There aren’t enough nursing home beds, there aren’t enough institutions, there aren’t enough professionals to take care of all the people who need care, so it really is paramount that we take care of the family caregivers and help support them in their role so that they can keep doing it longer and do it in a way that they provide the best care for their loved ones but also have good care for themselves. It’s about quality of life for all."
For dementia in particular, a recently released RAND Corp. study estimated that in 2010 the value of unpaid contributions by family caregivers of those with dementia in the U.S. was $48 billion to $106 billion.
"When you don’t just focus on the senior, but you look at the caregiving — and having gone through that now myself, I can tell you it’s incredibly stressful on caregivers and the family, not just the senior — I think that is an ideal situation," said Howard Garval, president and CEO of Child and Family Service. "And perhaps nothing is more stressful than caregiving for someone with dementia, especially because people can live years, even decades, with the disease."
For Kakugawa, writing became the outlet that allowed her to deal with the emotional and psychological strains of caregiving, but she said any support that provides caregivers with tools to cope in a positive way is a step in the right direction.
"Help should always be here within us, whether through arts or any other tools that help us look from the others’ point of view and realize it’s not their fault that they act they way they do," she said by phone. "Once we build those human resources, I think we’re in a better place."
