Silver Linings: Alzheimer's training urged for health care workersBy ROBERTA BAKER
New Hampshire Union Leader
August 18. 2018 9:23PM
Denise Sleeper, 53, of Gilford considers herself fortunate, even though her husband, Scott, 52, is in hospice with end-stage Alzheimer's disease.
Her familiarity with brain injury enabled her to question early symptoms commonly mistaken for normal aging, such as forgetting where he put car keys and his favorite jacket, and becoming very angry about a missing wallet. Critical was Sleeper's written record of his paranoid, aggressive or unusual behaviors - such as dismantling a hissing pressure cooker instead of just turning down the stove.
In the end, she says, the diagnosis and treatment of Scott's early-onset Alzheimer's at age 47 - instead of the 65-and-older benchmark doctors look for - occurred because of the extensive testing, twice-monthly checkups, and accelerated hospital consultations ordered by Laconia Clinic neurologist Philip Savia, as well as offers of help and emotional support from a geriatric psychiatrist at Lakes Region General Hospital, Dr. Raymond Suarez.
"By the grace of God, we've been watched over," Sleeper says. "Even though we're in a terrible situation, it still could have been worse."
Early diagnosis and treatment gave the couple extra time together, she says. "For some people, it takes years to get a diagnosis."
In the wake of a sweeping Massachusetts bill signed into law last week requiring dementia training for primary care providers and all doctors - as well as dementia-sensitive protocols for treating patients who enter hospitals - Alzheimer's sufferers, their families and senior health advocates in the Granite State are pressing for dementia training for all health care workers and emergency responders who come in contact with dementia patients.
"They don't look like someone who's ill," says Sleeper, adding that police and EMTs who responded to her 911 call when her husband became threatening were skeptical and reluctant to take him to the emergency room. Early-stage Alzheimer's patients exhibit normal social behavior as long as interactions are brief or superficial; sometimes short-term memory lapses and trouble retrieving simple words are the only clues, experts say.
Stepped-up efforts to expand training in diagnosing and treating Alzheimer's disease, which affects roughly 24,000 statewide, are already underway in New Hampshire, where cases of the illness are expected to increase by 33 percent in the next seven years.
Although initiatives are expected to be rolled out over time, advocates at the New Hampshire branch of the Alzheimer's Association say this is the wisest approach in a state where hospitals are resistant to government mandates, physicians already feel swamped by continuing education requirements they say are often irrelevant, and the state is striving to attract and retain doctors by lowering the hurdles to licensing. The immediate solution, they say, is to make dementia training easy and accessible to the widest range of practitioners.
In Massachusetts, the new law requires that physicians, nurses and physician's assistants be schooled in the diagnosis and treatment of all forms of dementia before they obtain or renew their licenses.
The law also requires them to inform a family member or legal representative of an Alzheimer's diagnosis.
By October 2021, all Bay State hospitals must develop a plan for recognizing and managing dementia patients, who can become confused, agitated and uncommunicative in unfamiliar and chaotic surroundings such as emergency rooms.
"Someone with memory impairment can't respond to questions about medical history and why they're there," says Marjorie Burke of Weare, a retired pharmacist and author of books that chronicle her family's experience with her husband's Alzheimer's disease.
"It needs to be part of a course health care workers have to take, Dementia 101, so they understand why the patient is so disoriented and agitated," Burke said. "It's very unsettling for people with dementia to be taken out of their comfort zone. Dementia needs to be written in big letters on all their intake papers."
Current efforts in New Hampshire, sponsored by the Alzheimer's Association's state chapter and New Hampshire Legal Aid, include a legislative bill in 2019 requiring all home care workers and licensed nurse assistants to receive dementia training, and a re-tooled version of legislation narrowly defeated in 2017 requiring dementia patients to receive the same personal and financial protection given to domestic violence victims.
The New Hampshire Medical Society, in consultation with the Alzheimer's Association, is developing in-class training, online modules and resources that can be accessed through an online learning management system starting in 2019. Dementia education will also be on the agenda at physician meetings and conferences and part of residency programs being developed at New Hampshire hospitals, according to James Potter, the society's executive vice president.
Starting this fall, Project Echo, an initiative begun in New Mexico that's been successful in other states and endorsed by University of New Hampshire researchers, will enable increasing numbers of primary care physicians to share cases and consult with dementia specialists in online group meetings once a month.
"We need to promote early detection and intervention and move to prevention as more science comes to the forefront," says Potter. "Doctors are trained that education is ongoing. If there's information they can have, they're going to want it. If there's resistance, I don't think you're going to have that reaction across the board."
"This is a public health issue that we can put a dent in," says Heather Carroll, manager of public policy at the Alzheimer Association's Massachusetts and New Hampshire chapter.
With timely diagnosis and proper treatment "you can put a pause button on the disease process and use that time to live life to the fullest," says Melissa Grenier, the Alzheimer Association's regional manager for New Hampshire.
Silver Linings is a continuing Union Leader/Sunday News report focusing on the issues of New Hampshire's aging population and seeking out solutions. Union Leader reporter Roberta Baker would like to hear from readers about issues related to aging. She can be reached at firstname.lastname@example.org or (603) 206-1514. See more at www.unionleader.com/aging. This series is funded through a grant from the Endowment for Health.