What Can Families Do When Dementia Patients Are Kicked Out of Care Facilities?

The phone call came as a shock. Your aunt can’t transfer into memory care; we have to discharge her from this facility, a nurse told Jeff Regan. You have 30 days to move her out.

The next day, a legal notice was delivered. Marilou Jones, 94, who has dementia, was being evicted from Atria at Foster Square, an assisted living facility in Foster City, Calif. The reason: “You are non-weight bearing and require the assistance of two staff members for all transfers,” the notice said.

Regan was taken aback: After consulting with Atria staff about his aunt’s deteriorating health, he and Jones’ husband, William, 88, had arranged for her to be transferred to a dementia care unit at the facility. A room had been chosen, and furniture bought. But now, Atria was claiming it couldn’t meet her needs after all.

This action isn’t unusual. Across the country, assisted living facilities are evicting residents who have grown older and frail, essentially saying that “we can’t take care of you any longer.”

Across the country, assisted living facilities are evicting residents who have grown older and frail, essentially saying that “we can’t take care of you any longer.”

Evictions top the list of grievances about assisted living received by long-term care ombudsmen across the U.S. In 2016, the most recent year for which data are available, 2,867 complaints of this kind were recorded—a number that experts believe is almost surely an undercount.

Often, there’s little that residents or their families can do about evictions. Assisted living is governed by states, and regulations tend to be loosely drafted, allowing facilities considerable flexibility in determining whom they admit as residents, the care they’re prepared to give and when an eviction is warranted, said Eric Carlson, directing attorney at Justice in Aging, a legal advocacy organization.

While state regulations vary, evictions are usually allowed when a resident fails to pay facility charges, doesn’t follow a facility’s rules or becomes a danger to self or others; when a facility converts to another use or closes; and when management decides a resident’s needs exceed its ability to provide care—a catchall category that allows for considerable discretion.

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Unlike nursing homes, assisted living facilities generally don’t have to document their efforts to provide care or demonstrate why they can’t provide an adequate level of assistance. In most states, there isn’t a clear path to appeal facilities’ decisions or a requirement that a safe discharge to another setting be arranged—rights that nursing home residents have under federal legislation.

It’s very frustrating “because state regulations don’t provide sufficient protections,” said Robyn Grant, director of public policy and advocacy for the National Consumer Voice for Quality Long-Term Care.

Sometimes, evictions are prompted by a change in ownership or management that prompts a re-evaluation of an assisted living center’s policies. In other cases, evictions target residents and family members who complain about not getting adequate assistance.

We see this regularly: An assisted living [facility] will say your mom isn’t looking well, we’re sending her to the hospital to be re-evaluated, and then, before she can return, they’ll say we’ve determined her care level exceeds what we can provide and we’re terminating her agreement.

Amy Delaney, a Chicago elder law attorney, tells of a client in her late 80s with dementia admitted to an upscale assisted living community. When her two daughters noted deficiencies in their mother’s care, managers required them to hire a full-time private caregiver for $10,000 a month, on top of the facility’s fee of $8,000 a month.

One day, a daughter went to visit, saw staff napping and took pictures on her cellphone, which she sent to the facility administrator with a note expressing concern. “A few days later, she got a call telling her that her mom had become combative and needed to be taken to the hospital for psychiatric treatment,” Delaney said.

The daughters went to the facility and took their mother to one of their homes. “They found another assisted living facility for her a few weeks later,” Delaney said, noting that she found no record of behavioral issues in the woman’s record when the daughters contemplated suing.

“We see this regularly: An assisted living [facility] will say your mom isn’t looking well, we’re sending her to the hospital to be re-evaluated, and then, before she can return, they’ll say we’ve determined her care level exceeds what we can provide and we’re terminating her agreement,” said Crystal West Edwards, an elder law attorney in New Jersey.

Assisted living operators argue that transfers are often necessary when residents’ health deteriorates and that good communication about changing needs is essential.

“We believe providers should be upfront with consumers about their care abilities [and limitations] and encourage a robust, ongoing conversation with residents and loved ones about their needs — especially as they evolve,” wrote Rachel Reeves, a spokeswoman for the National Center for Assisted Living, in an email.

Atria Senior Living, which operates assisted living communities in more than 225 locations in 27 states and seven Canadian provinces, declined to comment on the circumstances of Jones’ eviction in keeping with its policy to protect residents’ privacy. In an email, a spokesman explained that “we conduct regular assessments, in accordance with state law, to ensure residents are receiving the appropriate level of care and to determine whether we can continue to meet their needs.”

In Jones’ case, Regan said his uncle William was told by a marketing manager that his wife could “age in place” at Atria at Foster Square since a wide range of services — assisted living, memory care and hospice care — were available there.

The couple was willing to pay a considerable amount for their move to the upscale community in July 2017: an $8,000 one-time entrance fee, $10,000 monthly for a two-bedroom apartment, $500 a month to have medications administered, and extra charges for help with transfers, being escorted to meals and more frequent bathing, among other kinds of assistance, that sometimes totaled $2,300 a month.

But Jones was becoming weaker. “My biggest mistake was not getting her into memory care sooner, where she would have received more attention,” Regan said.

In the weeks before Atria’s eviction decision, Jones had fallen several times, been hospitalized for an irregular heartbeat, and started on a new blood thinner medication.

After Atria’s action, “I lost all confidence in them,” Regan said. Within two weeks, he found another community, Sunrise of Belmont, for his aunt, who moved into memory care, and his uncle, who moved into his own apartment — at a combined cost of nearly $20,000 a month.

While his aunt is now receiving good care, his uncle was shaken by the move and is depressed and having difficulty adjusting, Regan said.

Elder law attorneys and long-term care ombudsmen recommend several strategies. Before moving into an assisted living community, “ask careful questions about what the facility will and won’t do,” said Carlson of Justice in Aging. What will happen if Mom falls or her dementia continues to get worse? What if her incontinence worsens or she needs someone to help her take medication?

• Review the facility’s admissions agreement carefully, ideally with the help of an elder law attorney or experienced geriatric care manager. Carefully check the section on involuntary transfers and ask about staffing levels. Have facility managers put any promises they’ve made to you in writing.
• If a resident receives an eviction notice — typically 30 days in advance — don’t move out right away. If the facility says it can no longer manage someone’s care needs, bring in a physician to evaluate whether assisted living is still a viable option, said Anthony Chicotel, staff attorney at California Advocates for Nursing Home Reform. Try negotiating with the facility if you can suggest a solution to the concern managers are raising.
• File a complaint with your local long-term care ombudsman’s office, which will trigger an investigation and usually slow down the process, said Joseph Rodrigues, the state long-term care ombudsman in California. Ombudsmen represent residents’ interests in disputes and can help advocate on your behalf, he noted.
• Consider bringing the matter to landlord-tenant court or civil court in your area — a legal option available when other avenues for appeal are not available. Or ask for a “reasonable accommodation of the resident’s needs under the federal Fair Housing Act.”
• Staying in place and waiting for the facility to initiate legal action will buy you time, which should be your goal. Don’t rush to move into another facility without checking and making sure it will be a better fit, now and in the future, Chicotel said.
• Also consider whether you want to stay at the current facility. “Do you really want to be someplace that doesn’t want you?” said Jason Frank, a Maryland elder law attorney. For most clients, he said, the answer is no.
• Finally, consider adjusting your expectations. “Success for some families is ‘I bought three years of good care for Mom in assisted living’ and now she’s moved along in her illness and it’s time for skilled nursing care,” said Judith Grimaldi, an elder law attorney in New York City.

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.