Almost 7 million Americans are living with dementia. Often caregivers seek placement for their loved ones. Adult care homes (assisted living and memory care) should provide the safety net caregivers expect.
The rules for discharge in adult care homes across states are vague. Evictions are a common complaint. In 2020 out of 41,511 complaints to the ombudsman, 3,265 were eviction complaints. Evictions are not always reported to the regional ombudsman, so the rate of evictions is higher, as evidenced by online dementia support groups.
Evicting dementia patients is not new. In 2022 the Superior Court in California ruled in favor of Gloria Single and her son. She was a patient dumped at a hospital. She suffered irreparable harm and passed away before a settlement was reached.
A resident can be discharged under a North Carolina licensing rule: “The discharge is necessary for the resident’s welfare, and the resident’s needs cannot be met in the facility as documented by the physician, physician assistant, or nurse practitioner. Needs that cannot be met are the keywords often used for eviction. It leaves a lot of wiggle room for a facility to terminate.
After a resident is accepted, facilities can care range, evict if cognition declines, or demand the caregiver provide outside resources. The rules protect the facility, not the dementia resident.
In 2022, my husband was accepted into a for-profit memory care facility with a $6200 monthly price tag. He was assigned a team of specialists who prescribed medication for his aggression and monitored his progress. I visited the facility every other day, and it was reported that he was improving every day. One staff member told me he was their best resident and blew kisses at everyone.
I was surprised when the irate owner phoned within two months of admission. He issued a 30-day eviction notice for aggression. I explained what the team told me. The owner replied, “If he shows no aggression in the next 30 days, I will rescind the eviction notice.”
Within two weeks, he had an unexplained fall which landed him in the emergency room. He was discharged back to the facility with a self-healing neck and hand fracture. I received a call at 7:30 am the next morning. I was told he fell out of bed and required an eyelid stitched. He was sent back to the emergency room. “We cannot meet his needs; he cannot come back.” was a voice message left by a med technician on my phone. The owner did not return calls, and the ombudsman offered no resolution. The safety net I thought I had was pulled out from under me.
I found my husband in the emergency room wearing a dirty T-shirt that was not his and a pull-up. No clothes or medication followed him. He arrived in the ER alone, and no one at the facility checked on him. He had later-stage dementia and could not articulate his needs. He was dumped like a piece of trash. A state-regulated facility should never tolerate this type of treatment.
I refused to move him from the ER as he had nowhere to go. He deteriorated, laying in the ER for ten days. He was not allowed out of bed and needed a family member to assist with feeding. Miraculously I found another memory care who accepted him. The new memory care offered no additional services and was $2,000 less monthly. Cost is not indicative of the care provided.
Transfer trauma, especially among dementia patients, should be avoided. It creates a variety of new symptoms and is very distressing to a dementia patient. My husband would have three transfer traumas within two months. He never returned to baseline and died eight months later.
The Adult Care Home Licensure Section meets with license providers and advocacy associations to develop the rules that govern these facilities. The Administration Protection Act governs the rulemaking process. It dictates that a petition for a rule change along with the proposed text be submitted for approval to the Medical Care Commission in that State. If approved, the Division of Health Service Regulation will start rulemaking procedures. It might take a year or longer for one rule change to be implemented. That rule will change only in the state it is petitioned in.
There is no time to waste. Caregivers, family members, or concerned citizens must petition poorly written rules that govern both Assisted Living and Memory Care facilities. I will begin with the Discharge Rule in NC that encourages evictions.
Rose Jordan served in the USAF, Department of State, and later as a computer training and support specialist. She was a two-time newspaper columnist and dabbled in other writings. After adopting her son at age 40, her passion for helping foster youth earned her an MSW degree. She spent many years teaching and supporting high-risk youth and adults.
After four years of searching for answers, in 2018, her husband Gary was formally diagnosed with vascular dementia. He passed away in December 2022. In her retirement years, she is committed to educating others on the plight of dementia caregivers. She hopes that they will receive the attention and resources they deserve. She is currently writing her first book, A Journey of Love. It documents eight years being her husband’s compass in a world he could no longer navigate.