Independence Day invites reflection on another form of freedom. How do we respect the autonomy of California’s elders who experience progressive forms of dementia while protecting them from potential abuse and other harm? Elders want to develop new relationships, remain in their homes, and drive their cars. Loved ones may question those choices.
We’ve blogged about how “parent custody” disputes – conflicts between children over the care and finances of an ailing parent – can leave everyone bruised. An excellent piece in The New York Times Magazine describes a woman with dementia and the controversy that swirled around her.
In “The Dementia Paradox,” published in the Magazine on May 14, 2023, author Katie Engelhart introduces us to Diane Norelius, age 81, her daughters Juli and Kris Norelius, and her paramour, Denzil Nelson.
Diane lost her longtime husband and then her son. She lived alone in a small town in Iowa, her daughters having moved away. She started a relationship with Denzil, who was the father of Juli’s ex-husband and who had helped with upkeep on Diane’s property. Diane had assets of several million while Denzil was a retiree of modest means.
After Diane was diagnosed with dementia, it became difficult for Juli and Kris to reach Diane by phone. They traveled out to visit Diane. Sheriff’s deputies arrived soon thereafter to serve a temporary protective order that barred Denzil from Diane’s home.
The Iowa court appointed Julie and Kris as temporary guardians and conservators of Diane’s person and estate, but allowed Denzil to visit Diane between the hours of 7 a.m. and 7 p.m. daily.
A few months later, the court conducted a trial on whether the guardianship of Diane’s person, and the conservatorship of her estate, should continue indefinitely and who should be put in charge of Diane’s affairs. The court did not appoint Juli or Kris as Diane’s guardians, nor did the court choose Denzil for that role – instead, it was assigned to Diane’s friend, Marcia Losh.
As for finances, the court appointed both the nominee of Juli/Kris (a lawyer) and the nominee of Denzil (a retired judge) as co-conservators, each of whom would be paid $200 per hour.
Guardian Losh indicated that Diane did not want contact with Juli/Kris, but did allow Denzil to move back into Diane’s house and visit her. Eventually, as Diane’s health worsened, a judge granted Juli/Kris the right to visit Diane for the first time in two years.
While relating Diane’s story, author Engelhart explores the perplexing issue: “when cognitive decline changes people, should we respect their new desires?”
The question is especially timely. The Alzheimer’s Association projects that by 2025 approximately 840,000 Californians will have dementia caused by Alzheimer’s disease, up from 690,000 in 2020, and Alzheimer’s disease is not the only cause of dementia.
Hence, with increasing frequency, situations like Diane’s will play out in California courts. A family member or friend becomes concerned that an elder with dementia is being exploited by another person. The concerned party may seek an elder abuse restraining order or the imposition of a conservatorship to protect the elder from the alleged abuser.
Yet the elder may see the purported abuser as a loyal companion and regard those who seek to intervene as meddlesome.
A judge then has to grapple with a murky situation. Does the elder need protection? If so, what protections are needed and who should serve as the protector?
California law provides a solid foundation for analysis. Under Probate Code section 810, all adults are presumed to have sufficient mental capacity to make decisions. A person contesting an elder’s capacity must prove the elder has substantial mental function deficits. Yet busy judges have limited information about the elder’s circumstances and tough decisions to make. Medical experts may offer diametrically opposed views of an elder’s capacity.
Family members concerned about their elders, and the judges who make decisions about them, should be sensitive to the risks of implicit bias. As Engelhart observes, ageism alone can cause the overprotection of older adults such that they’re not afforded the right to “choose poorly.” A diagnosis of dementia, even in its mildest form, may lead to an assumption that an elder’s choice is the product of mental incapacity and should be undone.
So on this Independence Day, let’s reflect on the freedom of the Dianes amongst us. Let’s strive to protect without overprotecting – it’s a difficult endeavor but a vital one.