Memory care under the microscope in Oregon
After tales of neglect, advocates are giving standards a closer look

Carol Dickerson placed her late husband, James, at Aspen Ridge Memory Care in March 2015 because the progression of his Lewy body dementia began to affect her own health.

The decision brought 72-year-old Dickerson relief from caregiving chores, but she remained her husband’s constant companion. She visited twice a day, every day. James needed her especially during the evening, when people with dementia tend to become anxious, a syndrome known as sundowners.

“Some are crying. Some are yelling out. Some are pushing. It’s horrid,” Dickerson recalled.

While looking through her husband James' things at her Bend home, Carol Dickerson holds up a picture from when he killed a deer on their property in Marcola. Andy Tullis / The Bulletin

Very attuned to his surroundings, James would become anxious, too. So after dinner, Carol would take him into his room and read aloud until bedtime, while other residents continued to wander about in an agitated state. “Sometimes I had to stand up against the door so the people wouldn’t barge in,” Dickerson said.

She always thought Aspen Ridge caregivers could use another set of hands to deal with the evening period. The help didn’t materialize, at least not during the seven months that her husband, who died in October, lived there.

Dickerson’s time at Aspen Ridge in northeast Bend overlapped with multiple investigations by Adult Protective Services, an agency within the Oregon Department of Human Services, of abuse or neglect and a licensing survey that resulted in a four-month ban on new admissions. Portland-based Frontier Management, which also owns Mt. Bachelor Memory Care in Bend and 50 other memory care facilities in 11 states, addressed all of the deficiencies identified in the license inspection and was allowed to admit new residents in December.

In Oregon, long-term care facilities that advertise a specialty in dementia must meet a set of minimum standards for building design including features such as locking doors that can be opened from an electronic keypad, plus staff training in different forms of dementia and accompanying behavior. For the state as well as self-paying residents, memory care costs more than standard residential care and assisted living, but the facilities are not required to provide a prescribed level of staffing, nor are the aides required to obtain licenses.

Aspen Ridge is one of several memory care facilities in Oregon that kept licensing inspectors and Adult Protective Services investigators busy last year, and the scrutiny remains. Prompted by problems at a Coos Bay memory care facility the Oregon Department of Human Services threatened with closure, an informal work group of legislators and advocates for the elderly are examining the standards for memory care.

Rep. Alissa Keny-Guyer, D-Portland, thinks standards around staffing and training are too lax, and the vulnerable residents of memory care could use more help from the Long-Term Care Ombudsman’s office. As chairwoman of the House Committee on Human Services and Housing, she heard testimony about Baycrest Memory Care in Coos Bay but thinks facilities around the state are failing to live up to the Oregon standard of “person-directed” care, which promotes each resident’s dignity, independence and comfort. “I think there’s a really big problem,” she said.

The problems at Baycrest and other facilities have come to light largely because of a husband and wife, both registered nurses, who spent hours each day with Dot Wright, a Baycrest resident who died in January at age 90. Her daughter, Kathy Wright, told legislators she witnessed people sitting for hours at a time without moving and aides who lacked fundamental understanding of dementia and how its symptoms can be heightened by physical problems such as urinary-tract infections.

Wright said she was most dismayed by the impersonal care. Aides would walk past a person asking for help, not look their way and assure them with a generic term of endearment, such as “sweetie.” Wright said people in memory care should be called by their names. “By the time they get there, they have two things left that is theirs,” she said. “That is their name and their feelings. Both of these things are often ignored in these facilities.”

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Oregon last revised its standards for the so-called memory care endorsement in 2011, but memory care is now the fastest-growing segment of long-term care in the state and nationwide, according to an annual report by Portland State University. There are 160 long-term care facilities in Oregon that have the memory care endorsement in addition to an operating license. The vast majority of memory care units are part of or encompassing a residential-care facility, where housing is like a dormitory in which people usually share rooms and dining. Medical care is overseen, though not necessarily in person, by a registered nurse and carried out by aides, most of whom are not licensed in a health care field.

Memory care also accounts for most of the substantiated abuse and neglect complaints from Oregon‘s 282 residential-care facilities, The Bulletin found by examining Department of Human Services’ online database, which is available to the public.

During 2015 and the first five months of this year, Adult Protective Services substantiated one or more complaints at 109 residential-care facilities, according to the DHS database. Of those, 75 also are authorized to specialize in dementia care.

Eight of those memory care facilities, including Aspen Ridge, saw 10 or more complaints during the 17-month period examined by The Bulletin. At Fern Gardens Memory Care in Medford, Adult Protective Services substantiated 31 reports of abuse or neglect, and at Baycrest in Coos Bay, there were 23 substantiated reports.

Long-term care facilities are required by law to report incidents of potential abuse or neglect, even when no one is seriously injured, and many of the incidents in memory care are resident-to-resident altercations. But Oregon’s memory care standards aim to prevent those situations. Facilities must provide “meaningful activity” and a supportive environment, including an accessible, secure outdoor courtyard. Staff members are to be trained in dementia-related topics, including effective interventions to challenging behavior.

The average memory care patient is 82 years old, and in community-based care, where most memory care occurs; 55 percent of residents take nine medications a day, according to Portland State’s annual survey. In addition, people with dementia have trouble communicating their basic physical and emotional needs, so they become agitated, combative or try to escape.

Their caregivers, who might or might not have experience with dementia, earn an average $12.62 in Oregon, Washington, Alaska and Hawaii, according to a Hospital and Healthcare Compensation Service report. Turnover in dementia-specialist facilities in those states was 39 percent last year.

The question is how memory care facilities should be staffed and what level of training should be required. Keny-Guyer and Rep. Caddy McKeown, D-Coos Bay, convened an informal work group on memory care after McKeown’s bill, which would have required memory care to employ certified nursing assistants, failed to gain traction in the short 2016 legislative session.

This is not the first time Oregon has looked to raise standards in care for dementia. As Jim Carlson, CEO of the Oregon Health Care Association, which represents the long-term care industry, pointed out during testimony on McKeown’s bill, the state already has an action plan for Alzheimer’s disease and related dementias. One of the stated goals is to optimize the quality and efficiency of care, and it calls for an analysis of the effectiveness of existing memory care standards.

Keny-Guyer said she wants to raise standards without driving companies away from the industry. “If they start closing down because they can’t make ends meet, then you’ve got nowhere to put people,” she says.

Facility owners say there’s plenty of incentive to get into the memory care business in Oregon. Those that receive the endorsement also get a higher rate of reimbursement for Medicaid-eligible residents, $4,100 per month. Most memory care facilities in Oregon, 83 percent, accept Medicaid, according to Portland State’s survey.

Oregon spent $248 million last year on Medicaid for residential care and assisted living, and $70 million of that was spent in memory care.

The bill for residents who are paying their own way is even higher, an average base rate of $4,781 per month, according to Portland State.

The pay, plus demand from an aging baby boomer population, makes specializing in memory care attractive. There were 160 facilities with a memory care endorsement in Oregon last year, up from 148 in 2014, according to Portland State. This year, 10 more facilities plan to apply for the state endorsement.

Residents at Country Side Living participate in morning "town hall" activities at the facility in Redmond. Activities keep residents healthy and independent, owner Erik Berkey says. Joe Kline / The Bulletin

Struggle over staffing

An old-time country-western song twangs in the background as Country Side Living residents in Redmond gather in a circle and hold colorful pieces of swimming noodle, which they use to bat at a balloon floating above their heads.

Country Side owner Erik Berkey said he interprets the state requirement to provide “meaningful activities” as generously as possible. “I’m huge on activities,” he said, adding that he employs four people in that area, so there’s something going on every day of the week.

A strong daily routine keeps residents calm, he said, and activity keeps them healthy and independent.

“The longer they’re able to do stuff themselves,” he said, “then we don’t have to do so much caregiving.”

When it comes to direct care, Berkey said he likes to have about one aide for every eight residents, but there’s no rule in the memory care endorsement standards, or in residential-care licensing, that specifies staffing levels. Oregon’s residential-care and assisted living facilities “must have qualified awake caregivers, sufficient in number, to meet the 24-hour scheduled and unscheduled needs of each resident,” the regulations state.

Those open-ended staffing requirements for residential care assume people are independent enough to speak up for themselves, Long-Term Care Ombudsman Fred Steele said. “Should that be the default way of approaching memory care?”

The Oregon Health Care Association declined to comment in the absence of a live bill related to memory care. During testimony on McKeown’s bill in February, Carlson pointed out that the Department of Human Services already has the authority to require facilities to bring in consultants or ramp up staff in response to problems.

Carlson also presented a cost analysis showing that if caregivers were required to be CNAs, costs would rise for residents. Aides would go from earning $10.90 an hour in the Coos Bay area to $13.26, and medication aides would go from earning $10.90 per hour to $16.20. That would raise facility costs by more than $217,000 a year, which would translate to private-pay rent increases of $581 a month.

California and Washington have recently revised their training standards around dementia. This year California required dementia training for all caregivers who work with the elderly, not just those who work in dementia specialty units.

Driven by the Service Employees International Union, Washington now mandates hours of training and a competency exam for anyone who works in long-term care, regardless of the setting. The training covers dementia, and the Alzheimer’s Association’s state-by-state guide to memory care regulations notes that Washington’s competency requirements are the most specific and detailed of any state.

Wendy McIlnay, director of operations for Senior Housing Managers in Wilsonville, said Washington’s long-term care training requirements drove up costs for companies and workers, who usually don’t have $600 to pay for the courses and testing. “It’s hard enough for us to attract folks who want to come in and take care of seniors,” she said. “We’re now facing a labor crisis in Washington.”

McIlnay said Senior Housing Managers doesn’t cover the cost of training in Washington because it’s already operating at a low profit margin. The company’s stated mission is to serve as many Medicaid-eligible residents as possible, though she also said the company’s Washington properties have a higher portion of private-paying residents.

Senior Housing Managers is a privately held company that operates Elderberry Square in Florence, which saw 16 substantiated abuse and neglect reports in 2015 and early 2016. That was after a license inspection found enough problems that the state banned new admissions for a period in 2014.

“It is true, they have had some issues,” McIlnay said. Her position was created in part to help turn around Elderberry Square, in which nearly every resident is Medicaid-eligible. Facility owners say Oregon’s Medicaid reimbursement for memory care, around $4,100 per month, is enough to cover the extra needs of residents, but they limit Medicaid admissions to protect their profit margins.

McIlnay said Senior Housing Managers is able to work with the Medicaid population because it’s more “creative” than most owners. For example, the company combines the role of executive director and marketing manager and may use fewer aides.

Elderberry Square, which has 48 beds with the capacity for 32 in memory care, employs one medication aide and one direct-care aide for a total of two caregivers per shift, McIlnay said. So the executive director and other ancillary staff also pitch in with residents. She added, “Our executive director there walks the dining rooms. Many times we’ll see her sit down and help a resident eat that’s struggling.”

McIlnay said Elderberry Square is a completely different place than it was in 2015. She went through two executive directors before finding the current administrator and in the meantime relied on help from nurses and managers at other properties, including East Cascade Retirement Community in Madras. “We basically stayed there until all the issues we had were taken care of,” she said.

The long-term care industry generally opposes state-mandated staffing ratios, and new software technology could provide a more precise way to cover residents’ needs.

About a year ago, Frontier Management, which owns Aspen Ridge and Mt. Bachelor in Bend, began using a software program to determine staffing levels according to residents, said Dusty Ahrens, director of clinical services. Each resident has a service plan that spells out his or her needs, such as help with bathing, and notes any high-risk behaviors, such as trying to escape. All that data is poured into the program, which translates it to staffing hours. Any changes in a resident’s condition will prompt an update in staff hours. A resident’s condition might decline so that she needs two people, instead of just one, to move from bed to wheelchair, Ahrens said. “We can see that in real time.”

The Department of Human Services is piloting a similar software program that will be available to other long-term care facilities.

It’s hard to get caregivers to come in and do the hard work when they can go down and rent out rafts for the same wage.
— Dusty Ahrens, director of clinical services for Frontier Management

High stakes, low pay

Finding and keeping qualified staff has been especially challenging in Bend, Ahrens said, and turnover may have contributed to the problems cited at Aspen Ridge last year.

“It’s hard to get caregivers to come in and do the hard work when they can go down and rent out rafts for the same wage,” Ahrens said.

She spent a lot of time at Aspen Ridge and ended up using a staffing company to cover gaps. Since last September Frontier has raised its base pay for aides to around $11 per hour and created wage differentials for night shifts, prior experience and a certified nursing assistant license.

Most of the serious problems that a Department of Human Services license inspector found at Aspen Ridge last year revolved around medication, and Ahrens blames those on a gap in nursing oversight after a key employee committed fraud.

Aspen Ridge promoted Melissa Olson, who’d been the residential-care coordinator since June of 2013, to the registered nurse post in June of 2015 after she told managers she’d graduated from nursing school and showed them a diploma and a fake license, which she created from her sister-in-law’s nursing credentials.

Ahrens said she caught on to Olson, who is on probation after a conviction on two felony counts of identity theft, and was doing her own investigation when the Oregon Board of Nursing tipped her off. Olson was fired and a replacement hired by the time of the license inspection, but there was a period when the facility didn’t have it’s own RN, Ahrens said.

“There wasn’t anything that showed the residents were harmed,” Ahrens said of the inspection report. “There was lack of documentation of what had or hadn’t been done.”

The state inspector found that Aspen Ridge made mistakes carrying out medication-related tasks, and several residents were placed at risk of harm. One woman returned to the emergency room after Aspen Ridge failed to administer her antibiotics, and another resident, who was on hospice care, might have suffered needless pain. Two residents experienced a change of condition — significant weight loss and a pressure sore, respectively — without being assessed by a nurse, according to the report.

While Aspen Ridge’s experience with an employee posing as a nurse is unique, it shows that much of what happens in a long-term care facility comes down to individuals. Conditions in any facility can quickly spin out of control if the director, residential-care coordinator and registered nurse don’t work well together, said Joe Coss, a retired marketing executive and president of the Gero Leadership Alliance of Deschutes County. “It’s high pressure, low margin of error,” said Coss, who worked in long-term care facilities. “You’ve got to synchronize.”

The inspection at Aspen Ridge also demonstrates the complexity of residents’ medical needs. One resident, admitted in May 2015 with diabetes, had orders for four blood-sugar checks per day with insulin to be administered depending on the results.

The state inspector found Aspen Ridge’s nurse never delegated tasks for the insulin-dependent resident, meaning the aides weren’t taught, supervised and evaluated, nor was the patient’s condition re-evaluated at regular intervals.

Several times, the staff either administered insulin after noting low blood sugar, or did nothing in response to high blood sugar, greater than 450 milligrams per deciliter, according to the report.

Aspen Ridge was not allowed to admit new residents from Aug. 5, 2015, to Dec. 17, 2015, after a re-inspection found everything to be in order. “I feel like they have greatly improved,” Ahrens said of Aspen Ridge. “The nurse is doing a fantastic job.”

Lynne Farrell, a music therapist, works with residents during music hour at Aspen Ridge Memory Care in Bend. The facility was one of many in Oregon that kept licensing inspectors and Adult Protective Services investigators busy last year. Joe Kline / The Bulletin

Compassion needed

Melody Horner’s first job taking care of others was at Aspen Ridge Memory Care, but the 23-year-old Bend resident said she was struck by her peers’ lack of respect for human dignity.

During the four months she worked at Aspen Ridge in the spring and summer of 2015, she said she witnessed a man by the nickname of “Doc” often left lying on the floor after he’d fallen out of his chair. Other caregivers would insist that he preferred the floor, but Horner wasn’t convinced. “Every time I would get down there and talk to Doc and give him enough time to respond, he always wanted back up,” she said.

Horner realized the man was falling out of his chair because he liked to reach down and pick at carpet fibers, so she brought him a baby book with textured pages for him to hold and touch. “Once I gave him that book, he stopped falling out of his chair,” she said.

Horner, who now works in home health, said she left Aspen Ridge because she felt the environment was unprofessional. A state license surveyor observed the same lack of concern. According to the inspection report, several residents sat for 3½ hours or more without moving. At one point the inspector tried to track down help for a resident who’d been identified as needing heavy care but sat for several hours without moving or a change of briefs. Two separate aides replied, “Not my resident,” before walking away.

Dickerson said she knew that Aspen Ridge was facing sanctions — there was a notice on the front door — but she doesn’t have any complaints about her husband’s care.

“They did the best they could with what they had,” she said. “I’m just glad I was a presence there every day.”

Dickerson said she was one of few daily visitors at Aspen Ridge. “The only thing I would advise people is not to put your loved one in there without going in every day. When you keep your eyes on them, they’re not going to make mistakes with your loved one.” •

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