Correction appended: A previous version of this story misstated the effect of the new legislation as a requirement of local law enforcement. The training remains optional, but the law does mandate the state to develop the training program.
Early one morning, the Alzheimer’s Association 24/7 helpline received a call about a woman holding a pillow, saying she wanted to smother her husband.
The woman was struggling with desperation and frustration due to caring for her husband, who was a former travel salesman diagnosed with Alzheimer’s disease. Every morning, her husband woke up and searched the bedroom for his suitcase and plane ticket, and when he couldn’t find them, he often became verbally abusive or threw things.
Donna Lee, a program manager for the Alzheimer’s Association, called the woman back, shipped her a set of about 15 fake plane tickets and advised her to pack her husband’s suitcase and place it by the door.
A week later, the woman told Lee she had the most peaceful morning in about five years. Her husband would wake up, see his suitcase, pick up the plane ticket and calmly ask for breakfast.
“Something just that simple just changed her day-to-day life,” Lee said.
As a program manager for the Alzheimer’s Association, Lee offers guidance to caregivers and provides in-person training, community education and awareness sessions for Alachua County law enforcement officers and first responders on how to de-escalate interactions with individuals who have Alzheimer’s.
Department-wide Alzheimer’s training remains optional in Florida, though a new requirement of House Bill 801 that took effect Oct. 1 requires the Florida Department of Law Enforcement to work with the Department of Elder Affairs to create online training for law enforcement and correctional officers relating to dementia or Alzheimer’s.
According to the FDLE analysis, the continued employment training is estimated to cost FDLE about $11,000 to implement and develop, with no fiscal impact on state or local government and no effect on taxes. It includes effective communication, identifying signs of abuse and neglect, alternatives to physical restraints and instructions on recognizing the symptoms and characteristics of the disease.
State Rep. Gallop Franklin, D-Tallahassee, supported the bill and said the training was motivated by Florida having a large retirement community and the second-highest prevalence of Alzheimer’s in the country.
A specific level of experience is needed for law enforcement to remain safe and serve the community, he said.
“Being a police officer is one of the most honorable and riskiest jobs here in the country,” Franklin said. “With officers having this training, they're going to be able to identify and recognize characteristics of Alzheimer's, being able to communicate with the person and being able to de-escalate conflict.”
De-escalation training can allow law enforcement to prevent further aggression or maintain the safety of themselves, the individuals with dementia and their families.
Lee has provided de-escalation awareness and educational sessions at the Jacksonville Sherriff Office’s academy and the Alachua County Crisis Center. She also offered a series of eight in-person sessions at the Santa Fe Institute of Public Safety from Aug. 26 to Sept. 12.
Deputies and officers from the Alachua County Sheriff’s Office, Gainesville Police Department, University of Florida Police Department and Sante Fe Police Department have attended the sessions, said Sarah Slimak, the clinical community specialist for the Alachua County Crisis Center.
Lee said her main goal in educating officers and spreading awareness is to use simple terms to teach them how to communicate with individuals with the disease and prevent taking them into custody.
“It is for the officer to be able to recognize, ‘OK, this is a family that's dealing with somebody with cognitive decline. I need to approach them a little bit differently,’” she said.
As the most commonly diagnosed form of dementia, Alzheimer’s disease affects about 580,000 people in Florida, 7 million Americans and 4,800 individuals over the age of 65 in Alachua County.
The neurodegenerative disease causes cognitive and physical decline, making it difficult for individuals to speak and perform simple tasks. This can lead to physical aggression or violence.
De-escalating an interaction with an individual with dementia is based on the understanding that they cannot enter someone else’s reality, Lee said.
After death, the average adult human brain weighs about three pounds, but the brain of someone with middle-to late-stage Alzheimer’s weighs about half a pound, Lee said during a Sept. 12 training session.
“If their brain is physically eroding away, they can't come to your reality,” she said. “How do we get a better outcome?”
Lee’s educational and awareness sessions advise law enforcement to engage or “play along” with the individual.
“When you leave that scene as a public safety officer, you want to leave the family and those people in a better position than when you got there,” Lee said.
De-escalation tactics can include making the individual breakfast at 3 p.m. if they are wearing pajamas, taking them for a short drive if they insist on going to work or telling them a loved one “isn't here right now” if they are deceased.
Franklin recalled when his great-grandmother, who had Alzheimer’s, wandered from his family home and was found walking the streets around 3 a.m.
When Franklin was around 8 or 9 years old, his great-grandmother also began taking things from the family, including his hacky sack toy. At times, she became aggressive and hit him in the head with it, leading him to leave the toy out for her and consider it “grandma’s hacky sack.”
“Imagine her being out at 2:30 a.m. and then running into a police officer,” he said. “If that police officer doesn't even understand that she has Alzheimer's [or is] not able to build a rapport with her and be able to navigate her aggression, potentially, that could end up in the bad situation or circumstance.”
Through de-escalation, law enforcement officers can also resort to less forceful and physical options.
Sgt. Frank Kinsey, a 46-year-old commander for the Alachua County Sheriff’s Public Information Office, attended one of Lee’s sessions as a part of his yearly training.
With 20 years of law enforcement experience, Kinsey has worked with dementia patients who have wandered from home or gone missing. By working to enter their reality, officers can calm the individual down or learn important identifying information, he said.
“It's very frustrating for us because we are a very type-A profession where we just want the answers,” he said. “It's all about just observing what the interaction actually is, what you're actually dealing with and trying to identify what it is.”
Though every situation can be different, the use of force can include putting the individual in handcuffs to prevent further escalation, asking them to sit in the back seat of the car without handcuffs or placing them in an area where the situation can be contained and controlled.
“It can be a reassuring touch,” Kinsey said. “It can be a guiding movement. It can be a hand on the chest, like, ‘Hey, stay back over here.’ The faster we can recognize that it's not a crime, the easier it is going to be for us to de-escalate it.”
Because protocols are still being created for Florida’s training, Kinsey said he believes training will continue to change as it develops.
This could include inviting a role player to exhibit the signs of Alzheimer’s to allow deputies to recognize the disease and respond correctly, he said.
In addition to de-escalation tips, Lee’s training session provided Kinsey and all other law enforcement officers in attendance with the Alzheimer’s Association’s24/7 helpline. The number can be accessed by anyone and provides live assistance regarding information, problem-solving, resources and crisis management to caregivers, family members, law enforcement and first responders.
The Alachua County Sherriff’s Office also uses a system that flags any residence with information that is beneficial to the sheriff or citizen, including if someone in that address has dementia.
The office recommends civilians and caregivers input their information into the disability registry, where they can include important identifiers like vehicle and contact information.
The Alzheimer’s Association also encourages the use of its free online first responder training videos. Though tailored for law enforcement and first responders, the videos are open to the public and can be beneficial for caregivers, Lee said.
Following the new bill, Lee believes de-escalation and awareness training will become a vital resource for families and law enforcement across the country.
“When you have these educational tools,” Franklin said, “you're able to get a little bit closer to perfection and not feel like your life might be threatened.”