Alzheimer's is a disease that creates migrants. At first, it can mean resettling from an upstairs bedroom to a downstairs one, or hiring home health care aides. Then, as physical and mental functions pitch and roll, it can mean moving out to a facility. Judgment, speech, personality, self-care and memory all shift in the process.
Nearly half a million — 414,000 — New York state residents have Alzheimer's disease, the most common form of dementia, according to the Alzheimer's Disease Assistance Center of Long Island.
Overall, an estimated 5.3 million Americans, and 26.6 million worldwide, suffer from the disease.
NYSUT members and staff are bringing help and hope for patients and caregivers in two distinct ways — research and medical care undertaken at SUNY medical institutions, and in the wellspring of assistance offered by NYSUT Social Services.
New York's Department of Health has nine Alzheimer's Disease Assistance Centers across the state, and five of them are located within SUNY institutions: SUNY Downstate Medical University (Brooklyn), SUNY Upstate Medical University (Syracuse), SUNY Plattsburgh, SUNY Buffalo and SUNY Stony Brook University Medical Center. Each provides education, community outreach, clinical evaluation, support groups and treatment.
Dr. Mark Sedler, chairman of the Department of Psychiatry at Stony Brook University, directs the Long Island assistance center, working with clinicians at the university and in the community. He and his staff offer clinical and educational services and conduct research. Selder is a member of United University Professions, the NYSUT affiliate representing academic and professional faculty at SUNY.
Drs. Dimitry Goldgaber and Wolfgang Quitschke, also UUP members, seek to unearth the neurobiological causes of Alzheimer's and similar diseases, with the help of federal, state and private grants.
Goldgaber is investigating how the disease begins, including what Sedler referred to as the "radical theory" that Alzheimer's might be transmitted by infectious agents.
Quitschke is investigating the role naturally occurring substances might have in preventing the buildup of amyloid plaques, which are believed to be a cause of Alzheimer's.
Sedler emphasized the importance of state support for research and professional education.
"We depend on state funding to hire clinical and research faculty." His department educates future psychiatrists and other physicians in geriatric psychiatry, a field that will become even more prominent as the baby boomers reach the age when Alzheimer's typically begins.
"After age 50, incidence increases with each decade. There's going to be an increase in the absolute number of people affected with this disorder," Sedler said. "Your biggest risk factor is age."
Currently, doctors have only a "limited set of medications" to deal with cognitive impairment. They can offer some help with the depression, aggression and sleep disturbances, and suggest programs to help moderate memory loss, speech and language problems and physical impairments.
But they cannot offer a cure. As patients decline and cannot find words, memories waft and disappear. Understanding language and producing speech become harder. Gait can stiffen.
The disease is perplexing and demanding. Families often do not know what they face.
Shortly after she retired, Schalmont teacher Kathleen Nooney had to deal with upticks in the required care and doctor visits for her parents. Soon, her father was diagnosed with Alzheimer's and her mother with dementia.
In just three years, Nooney has had to move them three times as their needs grew — from their home to an independent living facility and then to assisted living. This fall, Nooney moved them to a nursing home.
Her dad, Nooney said, "thinks he has been on vacation and wants to go home."
Fortunately, a colleague of Nooney's suggested she get some assistance from NYSUT Social Services. She called Ani Shahinian, one of three licensed social workers who help members and their families in need.
"We get a lot of calls from family members who have loved ones with Alzheimer's," said Shahinian, who works with colleagues Scott Hicks and Laurie Kupperstein under the auspices of NYSUT Program Services, led by Vice President Kathleen Donahue.
"We have a database of resources throughout New York. We are not like a Yellow Pages, because we know what agencies have a good track record, what they provide and the quality of their care because we've worked with them in the past," Shahinian said.
"She was with me from the beginning. I've called her whenever I've had questions," said Nooney. "I've often felt like a ship sinking in a storm. I had a place to call."