Expanding Evidence-Based Care for Dementia

CINDY SANDERS


Expanding Evidence-Based Care for Dementia | Alzheimer's Association, Dementia, Alzheimer's Disease, Person-Centered Dementia Care Training Program with essentiALZ Exam®, Caregiver Credentialing, Monica Moreno

The Alzheimer's Association recently launched a new training program with certification exam to advance the deployment of evidence-based dementia care.

Targeted to care professionals in both long-term and community-based settings, Person-Centered Dementia Care Training Program with essentiALZ Exam®, is based on the nationally recognized Dementia Care Practice Recommendations, which were updated in 2018.

Scope of Alzheimer's

"Today in the United States, there are more than six million age 65 and older living with Alzheimer's dementia," said Monica Moreno, senior director of Care and Support for the Alzheimer's Association. "So many of the general population believe developing Alzheimer's is a normal part of aging, but we know that is not the case."

While age is the greatest risk factor, most seniors do not develop Alzheimer's while approximately 200,000 Americans under age 65 do. Gender and ethnicity also play a role in developing the progressive disease (see Facts & Figures box).

Moreno added it's important for people know and understand the warning signs and to eliminate other health concerns. "You want to make sure your symptoms are getting addressed appropriately," she said. "Studies have found that urinary tract infections and thyroid disease are two potential issues that could cause symptoms that mimic some dementia behaviors."

Person-Centered Care

"Alzheimer's disease affects every person differently. That's what makes it challenging for caregivers," Moreno said.

The Alzheimer's Association's new program is designed to educate caregivers on evidence-based best practices around assessment, detection and care planning including medical management, dementia-related behaviors, activities of daily living, supportive environments, transition and coordination of services and other recommendations.

"All of that information can empower caregivers to be better prepared for the future," Moreno said. "They're actually being proactive instead of reactive."

While many individuals with Alzheimer's still live in the community, care needs do increase as the disease progresses. "About 48 percent of nursing home residents have some form of dementia, and about 42 percent of people in assisted living have Alzheimer's or another form of dementia," Moreno said.

It's particularly important in long-term care settings, where care providers aren't intimately familiar with someone's history, to make an effort to learn about the person as an individual. "The practice recommendations are grounded in person-centered care," Moreno stated. "The diagnosis is only part of who they are; it's not who they are."

Personal preferences and life experiences should shape approaches. Moreno cited an example of a resident who unlaced her shoes and tied the closet door shut each day. If caregivers touched her closet, she became extremely agitated. As it turns out, the woman had been forced to flee with the clothes on her back earlier in life. That experience impacted how she felt about her possessions.

"She didn't even want them to take clothes to the laundry, but it would not be serving her to allow her to wear soiled clothes," Moreno said. "So, they devised a strategy to get her clothes while she was in an activity and get the clean clothes back before she even knew they were gone."

It was a simple accommodation, but it made a big difference in the woman's quality of life.

Creating the Program

"The training is reflective of the practice recommendations," Moreno said. "While these recommendations were peer reviewed and evidence-based, which is critically important, it wouldn't move the needle if they just sat on a shelf, which is why we need to get the information out. There's really a larger footprint we're trying to create."

The goal was to access professionals across the full array of care settings - nursing homes, assisted living, home care, home health, adult daycare and hospice. At the end of 2020, the Alzheimer's Association debuted the new online training, which has six modules and is self-paced.

Once completed, the essentiALZ Exam® tests the individual's knowledge with a 45-question exam. Moreno said a score of 90 percent or higher results in a two-year certification.

Individuals who wish to become certified can access the program and exam for less than $60. There are also packages for providers committed to training staff. And the association has a curriculum review program that compares an organization's training program to the practice recommendations with feedback on how to address gaps in care.

"It's another channel to make sure direct care works have access to content that is reflective of these evidence-based practices," Moreno said.

The Latest Facts & Figures

Alzheimer's Disease Facts and Figures, an annual report released by the Alzheimer's Association, reveals the burden of Alzheimer's and dementia on individuals, caregivers, government and the nation's healthcare system. The 2021 publication reports:

  • Prevalence: An estimated 6.2 million Americans age 65 and older (11.3 percent) are living with Alzheimer's today. That number is projected to hit 12.7 million by 2050.
  • Risk: Women and people of color are disproportionately affected. Almost two-thirds of Americans with Alzheimer's are women. Older Black Americans are about twice as likely and older Hispanic Americans about 1.5 times as likely to have Alzheimer's or other dementias as older White Americans.
  • Disparities: Despite increased risk for Alzheimer's and other dementias, Black and Hispanic Americans are less likely to be diagnosed than White Americans. Half or more dementia caregivers - 63 percent of Native Americans, 61 percent of Black Americans, 56 percent of Hispanic Americans and 47 percent of Asian Americans - said they have faced discrimination while trying to navigate healthcare settings for their care recipient. People of color want healthcare providers who understand their unique experiences and backgrounds but fewer than three in five believe they have access to culturally competent providers.
  • Mortality: One in three seniors dies with Alzheimer's or another dementia. Between 2000 and 2019, deaths from heart disease decreased 7.3 percent. Deaths from Alzheimer's have increased 145 percent. On top of that, just during the COVID-19 pandemic, Alzheimer's and dementia deaths have increased 16 percent in the U.S.
  • Cost: In 2021, Alzheimer's and other dementias are projected to cost the nation $355 billion, including a combined $239 billion in Medicare and Medicaid payments. Without a treatment to slow, stop or prevent the disease, the figure is projected to rise to more than $1.1 trillion by 2050.
  • Caregivers: More than 11 million Americans provide unpaid care for people with Alzheimer's and other dementias. In fact, 83 percent of the help provided to older adults in the U.S. comes from family members, friends or other unpaid caregivers with nearly half of that group providing help to someone to someone living with Alzheimer's or another dementia. Last year, those caregivers provided an estimated 15.3 billion hours of uncompensated care valued at nearly $257 billion.

And in Other Alzheimer's News

AFA Unveils Full-Scale Apartment Model as Teaching Tool

In late May, the Alzheimer's Foundation of America (AFA) unveiled The Apartment, a full-scale model of a dementia-friendly home, as a teaching tool for families and caregivers.

Located at the organization's New York headquarters and accessible for online virtual tours, the residence showcases more than 30 practical design and technology enhancements to make a home safer and improve quality of life for people living with dementia and their care partners.

The model includes an entryway, kitchen, bedroom, bath, living room and dining area. "The Apartment was created as a teaching tool for the growing population of families who have loved ones living with dementia," said Charles J. Fuschillo, Jr., president & CEO of AFA.

"Because Alzheimer's disease and other dementia-related illnesses impact the mind, they can make many facets of daily living very difficult," he said. "Safety and quality of life are two of the most important concerns for families, which is why we want them to know about steps they can take to make their homes more dementia-friendly, from appliances to paint colors, whether they live in a house, apartment, condominium or townhouse."

AFA's Apartment showcases a host of dementia-friendly adaptations, from simple measures like putting a red wreath on the front door as a visual cue to more high-tech safety solutions. A few of the featured modifications include using:

  • Optimum glare-free lighting that operates with circadian rhythms, natural night-day patterns of high and low blue light, plus floor-level night lights in the bedroom and bath that turn on automatically in the dark.
  • A motion paging system to be placed by an individual's bedside or bedroom door to detect motion, sending a wireless signal to the care partner pager; an alert system/video doorbell, and smart smoke and carbon monoxide alarms.
  • A smart refrigerator that enables caregivers to see inside remotely, an electric tea kettle that automatically turns off, and clear-front cabinets to aid with memory recall and help those whose vision is challenged.
  • An ergonomic motion chair, large number/photograph telephone, adjustable style bed, and round end tables to prevent injury from sharp corners.
  • Color contrast dishware and place settings, elevated plates to bring food closer, weighted silverware, coated spoon, and ergonomic mugs.

To take a virtual tour, go online to alzfdn.org/TheApartment. In addition to the practical video suggestions, a free companion piece, The Apartment: A Guide to Creating a Dementia-Friendly Home, is available to caregivers. The 20-page booklet showcases each of the rooms with detailed, step-by-step summaries of dementia-friendly modification, as well as a sample product listing appendix.