Caring for people with dementia

EDITOR'S NOTE: This story is the third of a four-part series on dementia.

When Holly Edmondson was in nursing school 30 years ago, she says she was taught that the goal for people with dementia was to reorient them to the present.

Telling them what year it is, that their children are adults or that their spouse is no longer alive was then thought to be the best way to care for them.

That's not the case anymore.

Edmondson, clinical case manager at the Grand Traverse Pavilions facility, now teaches a class at Northwestern Michigan College on meeting dementia patients where they are.

"Reorientation is counterintuitive for souls with advanced Alzheimer's or dementia," Edmondson said. "Using their thought process, their reality, their time frame is OK. They don't need to be in the current 2023."

Across the country, health care facilities and memory care units aim to care for dementia patients whose families and caregivers need professional help.

Dementia refers to a group of diseases affecting memory, thinking and social abilities that interfere with a person's daily life. Alzheimer's disease is the most common form of dementia in older adults.

About 6.7 million Americans 65 and older have Alzheimer's, according to the Alzheimer's Association. Of those, 73% are 75 or older. That number is on the rise, with about 13 million people expected to have the disease by 2050, with minority populations being affected the most.

Registered nurse Jenee Asper is administrator of supportive care at Orchard Creek, a private-pay facility in Traverse City that has 20 beds. The unit is licensed through the state as an adult foster care home.

Residents in the supportive unit typically require more help with things such as bathing, eating and using the bathroom, so the staff-per-patient ratio is higher, Asper said. Care is tailored to each resident, she said.

"It depends on where they're at in their dementia," Asper said.

Memory units are facilities with specialized care, where the lighting is dimmer and residents can participate in smaller or one-on-one activities.

One of the criteria for moving a resident from assisted living to a memory care unit, where doors have alarms or are locked, is when they try to leave the building in an attempt to get back home.

For families, it can be difficult to witness the cognitive changes in their loved ones, Edmondson said.

"We often hear (families) say, 'That's not my mom, my uncle, my grandfather. That's not how they were,'" she said. "We tell families we know that's not who they were, that it's not a reflection on them. We don't judge. We understand the process."

That process should be carefully considered so that the patient's wishes are known well ahead of time, said Dr. Roman Barraza, a hospice and palliative care specialist with Munson Healthcare in Traverse City.

"The tragedy of dementia," Barraza said, "is when these patients and their families are never given that space, time and opportunity so that the patient, from the time of diagnosis, can understand what the implications for their future might be."

It's best if family can hear from the patient what they want to have happen before the dementia becomes so advanced that it's not possible to know their wishes, he said.

Family support

Casual get-togethers led loved ones of Diann Martin to raise concern about her memory and her health. A visit to the home of her in-laws, Shirley and John Martin in New Wilmington, Pennsylvania, was hardly unusual. What was unusual was her behavior.

"She's just looking around the home like she was there for the first time. She was trying to remember but couldn't. We knew then that something wrong was going on," Shirley Martin said.

As Shirley Martin recalls, Diann Martin, now 77 and widowed, increasingly became confused by familiar surroundings, even in her own home. The social butterfly grew withdrawn and apathetic.

That was roughly 16 years ago. Diann Martin has since been diagnosed with "unspecified dementia" without behavioral disturbances or mood disturbance.

She was moved six years ago into the Woodside neighborhood of Shenango on the Green in New Wilmington, a continuing care retirement community. Her neighborhood is dedicated to dementia care.

"We just knew we didn't have a choice," Shirley Martin said. "We had to do something."

She said her sister-in-law seemed to get better when she arrived at Shenango on the Green. Living in the Woodside community allowed her to socialize. She received her medication regularly. She likes the food and she likes spending time in a courtyard where flowers bloom.

Shirley Martin said one of the most important things families should remember is to find support for themselves as they're trying to get the best care for their loved one.

Support groups, often offered by care facilities, are available for families and caregivers.

The Alzheimer's Association has a 24/7 hotline (800-272-3900) and provides a variety of free support groups, education programs, tips for taking care of someone with dementia at home and more.

Costs

The costs of professional care for dementia patients vary depending on where a patient lives and what type of care they need.

But in general, according to research from insurance company Genworth, monthly median costs in 2021 were:

$5,148 for home health aides.

$1,690 for adult day health care programs.

$4,500 for an assisted living facility.

$7,908 for a semi-private room in a nursing home.

$9,034 for a private room in a nursing home.

The cost of memory care facilities also varies greatly, according to A Place for Mom, a New York-based for-profit senior care company.

The national median of all memory care facility costs in the U.S. is $5,800 per month, according to A Place for Mom data. Maine is the most expensive state, with a median cost of $8,632, and South Dakota the least expensive, with a median cost of $2,875, according to the company.

To pay these costs, the Alzheimer's Association recommends families look at all options, including:

Insurance, including Medicare, disability insurance from an employer-paid plan or personal policy, life insurance and long-term care insurance. Benefits and coverage will depend on an individual's policy; Medicare will cover some, but not all, care costs.

Government assistance, including Social Security Disability Income for workers under 65, Medicaid, veterans' benefits, or tax deductions and credits.

Community support, including respite care, support groups, or transportation and meal delivery services.

Retirement benefits.

Personal savings and assets.

The association also recommends working with financial advisers or estate planning attorneys who can help identify potential financial resources and tax deductions to put toward the costs.

Dr. Christine E. Kistler, a family medicine practitioner who recently relocated from North Carolina to Pittsburgh, Pennsylvania, said most dementia patients need in-home care, either professionally or through the support of family or friends. Kistler specializes in geriatric medicine and practices at University of Pittsburgh Physicians, Department of Geriatrics.

"The burden of dementia in a family, I would say, is on par if not exceeding the burden when a patient has cancer," Kistler said. "I do have people who literally bankrupt themselves. They have to sell their house, get reverse mortgages and go to live with (a loved one)."

Kistler recommends patients and caretakers speak with legal aid resources, seek help in shifting assets and setting up legal trusts.