Raising awareness of dementia
It began with forgetting appointments and the slow erosion of remembering names, before losing the keys only to find them in the freezer.
Eventually, like many Alzheimer’s patients, Anita Dahan began to walk out of her home in Rockville, Md., wandering the neighborhood lost and afraid to ask for help.
Married 52 years to her husband Fernand, “she made my life heaven on earth,” he recalled. “Unfortunately, the last 10 years [of her life] were very painful [for me].” She died in late 2016.
Initially bewildered, Fernand Dahan would comb the streets trying to find his wife, afraid she would freeze in winter’s cold, or fall and be badly hurt. He was embarrassed to admit what was going on, but eventually connected with the Montgomery County Police — and was surprised to find a wealth of resources thanks to its recently established “dementia friendly initiative.”
The police department program is part of a concerted county-wide effort to help the escalating number of people with Alzheimer’s and other dementias navigate, and be supported by, their communities as long as possible. And the county’s effort, in turn, is part of a national effort, called Dementia Friendly America, that is spreading throughout the country.
A main thrust of the effort is to educate those in businesses, religious institutions and nonprofits to understand the signs of dementia and learn the best ways to work with, and assist, those suffering from it.
In addition to Montgomery County, a similar program is well established in Prince George’s County, Md., one of the first communities to adopt the program, and one is getting underway in Herndon, Va., which hopes to be a model for the rest of Virginia.
“Many people think most of those with dementia are living in nursing homes. That is not true,” said Meredith Hanley, director of community capacity building at the National Association of Area Agencies on Aging, which is administering the Dementia Friendly America project in communities in 36 states. “People live for years, and live well, in the community.”
Ana Nelson, vice president of programs and services with the National Capital Area Chapter of the Alzheimer’s Association, agrees.
“An Alzheimer’s diagnosis can make a person feel totally lost. They don’t know where to turn, where to ask for help. A number of people living with early stage Alzheimer’s have stated they just can’t [sit and] wait for others to help them. They have to go out and help themselves.
“We have seen many people living with early stage dementia living very successfully in their communities. Maybe they have to make some adjustments, take some safety precautions.
“Most important, they need to lean on others from the community to facilitate their independence. That’s where Dementia Friendly America comes in — to help older adults live with dementia, to live in the community, to be independent, to continue to contribute to the community where they live.”
Preparing for the future
The Dementia Friendly initiative is designed to help address the concerns raised by the rapidly increasing number of those with Alzheimer’s and related dementias.
Currently one in 10 people age 65 and over in the U.S. has Alzheimer’s disease, according to the Alzheimer’s Association. By 2050, the number of people age 65 and older with Alzheimer’s is expected to nearly triple, from 5.3 million today to a projected 13.8 million, barring the development of medical breakthroughs to prevent or cure the disease.
Virginia had 140,000 people living with Alzheimer’s disease in 2017. That number is expected to rise by almost 36 percent to 190,000 by 2025. Maryland’s 2017 population of 100,000 Alzheimer’s patients is expected to grow to 130,000 by 2025.
In contrast, the number of Alzheimer’s patients in the District of Columbia is expected to remain fairly stable at 9,000, largely because of the influx of young people moving to the city.
Training police, businesses
Dahan credits the Montgomery County Police Department’s dementia friendly training with helping him keep his wife at home rather than moving her to an institution.
Police told Dahan to call 911 as soon as his wife went missing, so they would have the best chance of finding her unharmed.
“It’s terrible for both the person who is lost and the person who can’t find them, [but when you hear], ‘We found your wife,’ there’s a sigh of relief. Ahhhhh,” Dahan exhaled during a dementia friendly event to demonstrate his joy at being reunited with her.
“We teach officers how to recognize someone with dementia even in a call where someone isn’t missing,” said Officer Laurie Reyes. “Maybe someone who can’t find their car [appears to have dementia, so an officer] may call a family member, while maintaining the dignity of the [confused] person, having compassion,” she said.
Reyes knows how important this skill is for police officers and others. She began Project Lifesaver, an outreach program dedicated to educating law enforcement and community members on the dynamics of interacting not only with those who have dementia, but also with people who have autism and intellectual disabilities.
“Our message is: When your loved one is missing, your first call [should be] to us, not neighbors,” Reyes added. “Do not be embarrassed. It allows us to have more effective response and resolve much faster. We’re trying to prevent tragedies,” she said.
A four-hour Dementia Friendly training course goes into depth with specific ways to respond to those with dementia.
Montgomery County is also starting to offer one-hour training to area businesses, as well as a speakers bureau whose members can educate the public on the topic at places of worship, local clubs and nonprofit organizations.
A customer service mindset
The initiative trains and certifies businesses and their staffs to be alert to signs of dementia in customers, and to know how to handle such situations.
It could be as simple as offering a quiet corner of a doctor’s office to patients there with caregivers — to reduce the noise and distractions that could increase agitation in a dementia patient.
Or at a restaurant, it might mean a waiter recommends a couple of items from a menu when someone appears overwhelmed by the number of choices presented.
“The training helps people be on the lookout for someone entering their business, who is either confused or doesn’t seem right,” said Lylie Fisher, who coordinates the caregiver support program for Montgomery County government.
For example, “A confused older adult might come into a store and ask for a cup of coffee, but has no money. Normally, we would say ‘we’re not going to give you the coffee. Go away.’ But if someone has training to identify and assist dementia patients, the waitress might engage the person on why they don’t have their wallet, or if there’s a family member she could call to help out.
“We’re talking about good old-fashioned customer service. In some ways, we’re putting this in the lens of Dementia Friendly, but in reality this is what every customer would like to have,” Fisher said.
Noah Dubin is vice president of District Mobile Dental, a business that largely serves an older clientele, some of whom he said remind him of his own grandfathers, both of whom had dementia.
Dentists from the company, the first in Montgomery County to be certified Dementia Friendly, travel to patients’ homes. “What we realized was that [some patients] coming into our practice were probably experiencing what my grandfathers did: A lack of daily care because they didn’t remember how to do it; a lack of motivation to care for themselves; cavities.”
As they treated more patients, they discovered that they needed to tailor their care to each person. Some didn’t know why they needed dental care. Others became agitated when a stranger touched them.
But his patients with and without dementia have one thing in common, he found. “We’re providing a service no one likes,” Dubin quipped.
Other area programs
In Prince George’s and Fairfax counties, similar efforts are underway.
Last year, the Prince George’s County Dementia Friendly program conducted more than 350 memory screenings for residents, held training for law enforcement, convened more than 40 churches for an interfaith dialogue on dementia, and held many other activities.
The county also offers monthly memory cafés in five locations, where caregivers and people with dementia can gather safely for socializing and stimulating activities. Participants can ask for help or advice from the facilitator, or for a referral to resources.
And the county will be offering memory training classes this spring at the Camp Springs Senior Activity Center.
The state of Virginia is exploring how to become a Dementia Friendly state, and a pilot program in Herndon is now getting off the ground.
“Virginia one of the last remaining states without Dementia Friendly programs,” said Toni Reinhart, owner of the Comfort Keepers home care service based in Herndon. “I’m not sure why. We’re a little behind the pace.”
Based partly on the experience of caring for her father, who has dementia, Reinhart is advocating for communities in Virginia to become affiliated with Dementia Friendly.
Herndon has about 2,500 people with dementia, a number that could skyrocket by 40 percent in the next eight years, she said.
“My brain can’t even process the numbers. It’s time we do something. With Alzheimer’s and other dementias, the quicker they become isolated, the quicker disease progresses,” Reinhart noted.
So she has started making presentations at local congregations about how they can better support their members and others in the community who have dementia.
Another component is reaching out to local businesses, especially doctor’s offices, which Reinhart said are especially difficult for her father. Sometimes the receptionist doesn’t acknowledge him, or the crowded rooms intimidate him. He can’t understand the directions to find the bathroom.
“It doesn’t necessarily take a huge amount of change. It’s teaching staff to help people [more]. It’s better signage to find the restroom. Some of it is not just for dementia. We’re all looking for a good experience when we go out into the community.”
For more information about the dementia friendly movement, or to find out how you can help or be trained, contact:
- Dementia Friends, which trains individuals how to support people who live with dementia: https://dementiafriendsusa.org. Contact in Maryland: mailto:firstname.lastname@example.org; contact in Virginia: mailto:email@example.com
- Dementia Friendly Montgomery County (contact for speakers bureau and general information: Lylie Fisher, (240) 777-3037, http://www.montgomerycountymd.gov/HHS-Program/ADS/dementia-friendly.html
- Dementia Friendly Herndon: (703) 435-2500, http://www.dfaherndon.org
- Dementia Friendly Prince George’s County: Memory Cafes, (240) 467-3833; memory training classes, (301) 449-0490
- Dementia Friendly America: http://www.dfamerica.org, firstname.lastname@example.org