AMHERST, N.Y. — Sara Goldhawk is visiting her 88-year-old dad John at lunchtime, who, with late-stage Alzheimer's, has been living in a memory care facility since mid-June.
"He's adjusting, apparently very, very well. He's healthy. He's eating. He's talking [and] making friends. He's doing exactly what he should be doing," said Sara.
Spectrum News 1 last spoke to Sara in April about the stresses of caregiving at home, where she lived with her dad for more than a decade. After a number of falls, the family decided he was safer in a group setting, especially on bad days.
"And then when there were good days, I'd say, 'oh, I'm going to miss him. I'm going to miss him.' But I kept telling myself he's not far away," said Sara.
During her visits, Sara gives John a cannabidiol (CBD) gummy, as the facility is not permitted to.
"It's been a godsend ever since then. I'm very grateful for it," said Sara.
Sara says it calms him and combats sundown syndrome, a condition that triggers irritability late in the day.
John usually takes one in the afternoon, with consent from his doctor and pharmacist.
"The worst that could happen is that it wouldn't work. It's not going to change his behavior for the worse. It won't interact with his other medications," said Sara.
John's doctor is from DENT Neurologic Institute, where its Cannabis Center has been treating patients since 2016.
Leaders say CBD has made an impact on sundowning, citing a study with patients over 75.
"Who have reacted to CBD in such a positive way. I think it was close to 80% of patients showed improvement in their overall quality of life," said Maria Caserta, director of marketing, DENT Neurologic Institute.
Caserta says more education is needed, as current federal cannabis law doesn't allow the proper clinical research to achieve those positive outcomes.
Leaders with the Alzheimer's Association are also calling for clinical trials before taking a position.
"There would need to be more empirical evidence pointing to its effectiveness, however, starting with your doctor and having a conversation is a great place to start," said Amanda Nobrega, vice president of programs, Alzheimer's Association UNY Chapters.
But through it all, Sara says she has seen an immediate change.
"Very relieved," she said. "That's all I want is for him to be happy. I want his quality of life at least at that level, to make him happy."
In addition to the CBD gummies, one of the neurologists at DENT has developed his own line called Percise, a powder you mix with a beverage to be used for migraines, sleep, calm and pain. It will be made available in July.
On July 2, the U.S. Food and Drug Administration (FDA) granted traditional approval to donanemab (Eli Lilly), sold under the brand name Kisunla, for the treatment of people living with early symptomatic Alzheimer’s disease, which includes mild cognitive impairment and the mild dementia stage of Alzheimer’s disease, with confirmed amyloid plaques. This is the third FDA approval granted for an Alzheimer’s treatment that changes the underlying course of the disease.
The Alzheimer’s Foundation of America released a statement, saying:
“We are encouraged by the FDA’s approval of donanemab and are optimistic that it will make a positive difference in the lives of individuals living with Alzheimer’s disease and their family caregivers. As with any medication, patient access and affordability to all those in need is vitally important, and we hope the FDA’s actions will facilitate both.
“This is another positive sign of further progress, but we must keep moving forward until we reach the finish line—a cure for Alzheimer’s disease. Federal policymakers must continue increasing investments in Alzheimer’s disease research and support services for caregivers to provide help and hope to the millions of Americans living with Alzheimer’s.”