Helping the caregivers: Training, consulting available to families of people with Alzheimer’s, dementia

Major lifestyle adjustments have affected George Watters and his wife, P.J., since April 2013, when they first learned he had early symptoms of Alzheimer’s disease.

Earlier this year, they moved into her sister’s South Hill house and sold their dream home in the Tower Mountain area. George Watters, 71, doesn’t drive anymore but still spends some days alone at the couple’s lake cabin or in Spokane. For those times, his wife checks in regularly with him by phone from her work.

As his primary caregiver, she also has regular backup from her sister, mother and friends who enjoy spending time with her husband, so she hasn’t had to hire any professional caregivers. Watters said she’s aware other spouses have a tougher time finding or hiring a “companion caregiver” to help guide someone in early stages of the disease, when a medical caregiver or in-home health service isn’t needed.

“George is considered in the early stages, but it’s hard to tell because he’s so smart still that he’s adapting well,” said P.J. Watters, 61. “His short-term memory is pretty much gone, but he’s still scoring in the 93 percentile of the population for vocabulary and his speech. He manages really well for a day or two on his own, as long as we can talk a couple times of day. For me, I want to make sure he’s taking his meds.”

She credits support from family and friends who watch out for both of them, so she can focus more on her husband’s needs.

“We haven’t had to pay anyone because people like to hang out with George, so there is companionship, which I think is really helpful when there is a short-term memory issue,” she said. “Someone might forget to eat, which isn’t George’s situation, but for some, it’s just making sure they’re eating, sleeping, taking medications, bathing – that doesn’t take a professional to do.”

Finding support in the community

In 2013, as many as 5 million Americans were living with Alzheimer’s disease, the most common form of dementia, said the Centers for Disease Control and Prevention. People in early and moderate stages suffer cognitive problems to a varying degree, including memory loss, personality changes and difficulty expressing themselves.

According to the Alzheimer’s Association, most people in the early stage of Alzheimer’s do function well independently, some still driving, volunteering and working at jobs. The organization also lists different types of in-home care for assistance with daily living, from companion roles – more for supervision and social interaction – to skilled care, including medical needs provided by a licensed health professional.

The Watters also attend an Alzheimer’s Association support group in Spokane, and members sometimes help each other out, P.J. Watters said.

“One woman, if she needs to run out for an hour, she might bring her husband over for a visit,” she said. “It’s a social support network with people who are in similar situations. We help each other move; we call on each other.”

Judy Cornish, who operates Palouse Dementia Care in Moscow, Idaho, has developed an approach called Dementia & Alzheimer’s Wellbeing Network, or DAWN. She offers training and consulting to families of people with Alzheimer’s, including Spokane-area clients.

Cornish recommends looking first within personal circles for companion caregiver options.

“The first place I’d look is friends and relatives,” Cornish said. “Secondly, I’d be looking at my church or my memberships at a club or group, because you want to have some kind of accountability. You want someone to refer this person.”

“The thing I wouldn’t do is advertise on Craigslist or in the newspaper.”

She also recommends a background check for someone new, and if hiring, to consider using an accountant service to set up worker’s comp.

“I’d recommend paying that person $15 to $20 an hour at a minimum,” Cornish said. “If you don’t pay well, it’s hard to keep someone long-term.”

“The family becomes the employer, and the accountant sets up a proper employment account. It’s only about $20 to $50 a month to have an accountant set this up for a family.”

Other ideas from Cornish:

If you have a regular housekeeper, ask if that person would be willing to add an hour or two of friendly visit time in addition to cleaning as part of paid duties.

If you’ve selected a companion caretaker, ask them also to watch for potential concerns: any sanitation issues because trash, pets, forgetting to wash hands? Is the person eating properly, maintaining good hygiene and keeping food stored properly?

Pay attention to whether the individual is dressed appropriately for weather. Offer to take them out for errands or activities by saying it’s something you want to do, such as going to a store or to a pedicure appointment.

“It’s more fun to do something while you’re being a friend, instead of saying, ‘You can’t do this anymore, so I’ll do it for you,’ ” Cornish said.

A friend can help ease fear

People who have memory loss and speech difficulties also might start feeling paranoid and isolate themselves, which means they lose ground cognitively without enough sensory or social stimulation, she said. Another challenge occurs if the person doesn’t accept a formal caregiver because they don’t recognize their impairments, Cornish added.

“Whether we introduce ourselves as helpers or friends depends on how accepting the person is of care,” Cornish said. “When they’re not aware of their impairment, the best way for a family to deal with it is to introduce a person as a friend. At DAWN, we call it care-giving by stealth. It’s just to have an eye in the home and an eye on the person.”

Tera Jo Hines, Elder Services family caregiver support specialist, said the agency provides free family support services for unpaid caregivers who are typically a spouse or relative providing in-home care.

“We have more dementia and Alzheimer’s than compared to any other medical condition,” Hines said. “So they don’t reach a level of burnout, what we try to do is help the caregiver find referrals and assistance within the community. Also, if they want, we can help identify a paid service such as a respite service or counseling.”

“We help people brainstorm ideas,” Hines added. “They really learn ways to communicate with family and their social network, like saying, ‘Do you think you can come over and eat dinner with dad?’ rather than, ‘Can you come watch dad for a little bit?’ We try to enable the type of communication that will help them.”

Hines also recommends a background check if hiring someone as a companion caregiver.

“We also refer them to some adult day centers in Spokane. There’s Providence Adult Day Health and Adult Day Care Spokane. They have spa days and gardening.”

George Watters, an advocate of independent living for seniors and the disabled, volunteers two days a week at an adult day care center. His background includes working to form the Center for Independent Living in Berkeley, writing support for the Americans With Disabilities Act, and leading a Spokane company, the Watters said.

He thinks people should view him and others with early Alzheimer’s symptoms under the term, “dementiability.”

“It means when you have dementia, you still have ability,” George Watters said.

He looked at his wife with a gentle smile as he said, “Sometimes she takes care of me a little more than I should be taken care of. There is a closing in thing that happens. Things are going away, and they’re going away fairly quickly, but it doesn’t mean you can’t take care of yourself, or do what you want to do.”