Maybe you can eat an apple, but you can’t remember how to cook beans on a stove. You can answer the phone, but you can’t remember how to dial 911.
The needs of people with Alzheimer’s disease and other types of dementia are subtle at first: It’s often years before the disease robs patients of their ability to speak coherently, eat, get dressed and use the bathroom.
Dementia care provider Judy Cornish’s efforts to meet those needs – drawing on recent research on what works for Alzheimer’s patients and a method that emphasizes clients’ sense of well-being – are drawing fans on the Palouse.
Cornish’s in-home care company, Dementia & Alzheimer’s Wellbeing Network, is based in Moscow. She launched it in 2010 (originally as Hearth & Home Senior Care Services) to meet a need she perceived for care for people with dementia – to help keep them safe and healthy at home, but also to help them prepare emotionally and psychologically for what’s to come.
“She’s got a handle on something great,” said Lorraine Fulfs, who operates two adult family homes in Pullman. “She knows dementia.”
People with Alzheimer’s disease tend to become paranoid and angry – they know something’s wrong, but they don’t know what it is, Fulfs said. Cornish “prepares people … to understand the disease that they have and then gives them the skills, whether they know it or not, to cope with what’s coming.”
In 2013, as many as 5 million Americans were living with Alzheimer’s disease, according to the Centers for Disease Control and Prevention. That number is expected to rise to 14 million by 2050. Alzheimer’s can last more than a decade, worsening gradually until death.
In the meantime, people in mild and moderate stages of the disease suffer cognitive problems to varying degrees – memory loss, personality changes, difficulty expressing themselves.
They probably don’t need help going to the bathroom. But they need some help – a “bridge,” said Joel Loiacono, executive director of the Inland Northwest chapter of the Alzheimer’s Association.
“Pick your favorite hobby,” Loiacono said. “Think about all the subtasks that you need in order to do that hobby. But you’re missing the ability either to remember or how to do some of the subtasks.
“If you had a small little bridge to help you to bridge over some of those subtasks, you could do the overall hobby or activity. In the early stages, that’s kind of what you need – somebody who can be that bridge.”
While her business can manage caregiving services for the duration of a disease, Cornish’s special focus is on serving people in those early stages.
“Senior care” traditionally helps people bathe, get dressed, eat – in industry parlance, to perform the “activities of daily living” a person does to take care of him- or herself.
But a person with early-stage dementia needs help with more complex tasks of everyday life, Cornish said.
“It’s during those years when having a (nursing assistant) show up and saying, ‘Hey, I want to change (your diaper)’ is not going to help you at all,” Cornish said. “What you need is some way to live with the emotional devastation of the disease. Somehow, you need to be able to maintain a sense of well-being.”
That sense of well-being is at the center of Cornish’s approach. She aims to foster it by focusing on four needs of a person with dementia, she said: to feel successful socially; to feel their future is safe; to feel valued; and to have a sense of control over their own life.
She and her employees also strive to give their clients tools they can use in the future, including the ability to trust other people to take care of them and the understanding that it’s safe to ask questions.
In “the early stages, what a person needs is psychological and emotional support,” Cornish said. “And they need to be able to learn to change their trust in themselves to trust in others.”
Palouse, Wash., resident Doug Park, 54, hired Cornish to “hang out” in the evenings with his mother in her home for about a year and a half, before she moved into an adult family home. Cornish related well to his mother, Lee Maddox, 93, who suffers from memory loss. She cooked for her, shopped with her, set up her medications for her to take – allowing her to live in her own home.
“It makes common sense to keep them engaged in their world as much as possible,” Park said. “Helping someone too much, or being condescending, that’s just a death spiral – at least emotionally.”
Cornish is doing business at a time when researchers and care providers are coming up with new ways to care for Alzheimer’s patients.
Nursing homes in Europe are erecting fake bus stops to try to defuse patients’ panic when they think they need to leave immediately. A North Carolina-based program called In The Moment trains dementia patients’ caregivers to use tools from improvisational performance.
A nursing home in Phoenix called Beatitudes incorporates residents’ individual histories and preferences into their care plans – putting chocolate on a nursing chart, according to one report, letting a 96-year-old woman care for a baby doll, and allowing nips of alcohol at night.
Tapping into research that found that emotion resulting from an experience persists long after the patient has forgotten the experience, Cornish directs her employees to set a positive mood in their interactions with clients.
Other adult care providers are taking note, too, hiring employees who’ve received dementia training and emphasizing the important roles of exercise and social and mental stimulation for dementia patients.
“It’s a critical part of education for anybody providing health care, not only in-home services,” said Doris Visaya, executive director of the Home Care Association of Washington.
But Cornish’s emphasis on emotional support for recently diagnosed people – still physically able but mentally disabled – is unusual.
Fulfs said she sees the result in a resident of one of her adult homes, a woman who’s also still a DAWN client. DAWN workers, who take the woman swimming and to social activities, cultivated a relationship with her over time and have demonstrated, “by their actions, that they can be trusted,” Fulfs said.
The resident made a smooth transition to the adult family home, Fulfs said. She “knows she has a poor memory. She knows she’s very good at being forgetful. But she’s very trusting, and that’s what Judy has given her.”
While most people running care agencies have worked as social workers or medical providers, Cornish, 55, is a lawyer with a varied background.
She helped workers with brain injuries in Vancouver, British Columbia, then studied languages and learning theory in college before teaching “psychosocial” skills to people with mental illnesses living in a “lockdown” facility in Oregon. In law school she focused on disability law and elder law.
DAWN got its roots, she said, after she and her husband moved to Moscow and she kept offering to help families of people with dementia – providing rides, companionship on social outings, shopping trips – as a friend.
“I’ve just been moving closer and closer back to what moves my heart,” she said.
Moscow resident Karen Davis, 73, said she considers Cornish a part of her family. Relatives hired Cornish to help care for two of Davis’ cousins, both in their 80s. One has Alzheimer’s, and the other has another type of dementia.
Cornish has helped to keep her cousins safe and their dignity intact, Davis said: “I told Judy she better be there when I’m ready.”