Stephen and Linda Lisicki know each other so well that they can finish each other's sentences. It happens when you've been married for more than a half century. But health scares in recent years have changed the dynamics in their relationship.
When Stephen needed two stents and a pacemaker last year, he and his wife were amazed that a couple of short procedures did the trick.
Linda wasn't quite so fortunate. She underwent a battery of tests four years ago after her memory began to slip, and was diagnosed with mild cognitive impairment, usually a precursor to Alzheimer's disease.
"It's a lot like cancer was years ago," Stephen Lisicki said. "People didn't talk about it and some of your friends didn't want to face you. Alzheimer's has replaced that."
The Lisickis, who live in Williamsville, have joined a growing legion of those who have had to confront a condition with no known cure, limited treatment options, and challenges that worsen over time – a combination that can torment even the strongest of families.
Cancer, stroke and heart disease deaths in the U.S. have all declined by 10 percent or more during the past decade, while dementia-related causes have climbed more than 40 percent, according the Alzheimer's Association. Those diseases are the sixth-leading cause of death in the nation, and someone develops one of them every 66 seconds.
The numbers help explain why Congress will plow an extra $400 million into dementia-related care, research and resources next year, for a total of $1.4 billion. It also explains why New York State has created 10 Centers of Excellence for Alzheimer's Disease, including a Western New York center based at the University at Buffalo Jacobs School of Medicine and Biomedical Sciences.
"We know this disease is underdiagnosed, underdetected and undertreated. The health care system is not prepared for the tsunami that's coming" as the baby boomers continue to age, said Leilani Joven Pelletier, who earlier this year left her job as executive director of the Alzheimer's Association of Western New York to become program director for the new center.
The regional Center of Excellence looks to address the thorniest issues that come with dementia. It is co-directed by two physicians and includes Pelletier, a nurse practitioner, a pair of social workers, and several strategic health-related partners.
Team members will help doctors and other health professionals across seven counties identify dementia risks earlier in patients, better test for and diagnose these diseases, and more effectively break the news to patients after a diagnosis.
They will help create more robust treatment protocols while conducting research aimed at better treatments and, ultimately, a cure.
And they will connect patients and caregivers with resources that can help extend, and prepare for, the progression of disease.
"It's about helping people to be healthier for as long as possible, not just living as long as possible," said Dr. Bruce Troen, a geriatrician and center co-director.
TESTING – AND BREAKING THE NEWS
Ten Centers of Excellence for Alzheimer's Disease were established last year as part of a five-year, $26.5 million effort statewide. The regional center will be fueled by $470,000 each year through 2020.
A key part is training doctors to better detect and treat all types of dementia. This is more complicated than handling patients with diabetes, high blood pressure, or even some cancers, where diagnosis and treatment is more straightforward, Pelletier said.
Training has started in several primary care settings, including UBMD Internal Medicine @ Hertel-Elmwood Center.
The clinic, led by Dr. Roberto O. Diaz Del Carpio, has four attending physicians, one nurse practitioner, 30 medical residents, two public health graduate students and a social worker. The staff sees 500 to 600 patients a month, most who have more than one chronic illness.
"As primary care physicians, we take care of so many complex patients that sometimes dementia goes unnoticed," Diaz Del Carpio said.
Further complicating matters: Blood tests don't yet exist to help with a diagnosis, and imaging remains more a research than diagnostic tool, said Troen, who also is director of the UB Center for Successful Aging, and chief of the medical school's Division of Geriatrics and Palliative Medicine. That leaves a comprehensive geriatric assessment and neurological testing "to predict with a good degree of accuracy the type of dementia people have," he said.
It takes time to discover not only memory problems but issues that can include behavioral outbursts, decision-making lapses, loss of insight and changes in social interactions.
An important new development in the diagnosis of dementia is that Medicare – mindful of the time it takes to accurately screen for cognitive conditions – will now provide extra reimbursement to primary care practices.
Breaking the news that someone has dementia comes with its own set of challenges.
"There are a lot more facets to patient care besides the medicine," said Dr. Edward Wilson Jr., who is in his third year of residency and at the Hertel-Elmwood Center.
When screening leads to a diagnosis, patients and families have to process the information and plug into resources. That's when the clinic staff turns to social worker Terry Schiavoni – who has begun work with Center of Excellence social worker Mark Ramos.
"This is a weighty diagnosis," Schiavoni said. "The center is a bridge, an additional support."
Schiavoni has a conversation about what comes next as patients and families begin to digest the shock, then she and Ramos begin to put a holistic treatment plan into place.
"Our goal is to get more comprehensive care first, get the patients and their family more comfortable," Ramos said.
They talk about medications that are available. They offer support. They then engage in close follow-up to try to ensure that the patient is going through the treatment regimen.
Patients and families need to understand that Alzheimer's and related disorders are progressive diseases, and that physical activity, diet and other healthier choices might slow, but won't stop them, Diaz Del Carpio said.
"You have to be cautious with that. You cannot give a patient false hope...," he said. "It's a very difficult conversation."
Testing, diagnosis and conversation are all worth having, Pelletier said, especially in families where denial or disagreement delays a potential diagnosis. A dementia diagnosis isn’t an immediate death sentence, she said. Treatment slows the progression but only after someone is diagnosed – not before.
Linda and Stephen Lisicki understand that.
The couple have two sons and five grandchildren. They moved to Williamsville three months after the Blizzard of '77. Their loved ones in Amsterdam, outside Albany, gave them gloves, shovels and long underwear as parting gifts.
Stephen, 73, an accountant, worked as a controller in several industrial plants before he retired after Linda’s diagnosis in 2013.
Linda, 71, worked for decades as a medical billing specialist, including in her own business. She was always healthy but began to slow down a bit, and become forgetful, by the time she retired five years ago. She weathered several PET scans, MRIs and blood tests – mostly to rule out tumors and other causes – before her diagnosis.
Doctors encouraged the Lisickis to keep a regular schedule and enjoy daily life in meaningful ways. Things could change in a year, they were told, or maybe a lot longer.
The couple dines out at least two or three times a week, often with a tight circle of friends. They exercise up to four times a week at Catalyst Fitness in Cheektowaga, near their home. They volunteer at their church, serve Meals on Wheels once a week and frequently walk their 10-year-old King Charles Cavalier spaniel, Charlie, in their neighborhood.
Changes have come slowly, subtly.
"The biggest thing that's bothered me from my end of it is, you know when you got a job or did something great in sports, and ran home to tell your wife? You got the initial thrill and also the thrill to tell somebody that's close," Stephen Lisicki said. "That's kind of gone. A lot of time she won't remember what I told her yesterday."
Stephen has taken an accountant's approach to helping his wife. He reads up on dementia and asks lots of questions during medical appointments.
"When I've called doctors, they were always sympathetic and encouraging," he said. "Sometimes, they were realistic. I think I'd rather deal with realism."
Linda takes a more relax approach.
"I just roll with it," she said.
The Lisickis aren't much for support groups, though they're glad they are available if they one day might need one. Their treatment plan also involves visits to the UB Alzheimer’s Disease and Memory Disorders Center, part of UBMD Neurology, which has clinical offices on the Buffalo Niagara Medical Campus and in Williamsville.
Dr. Kinga Szigeti, a neurologist, is director of the center and its related research lab, as well as co-director of the regional Center of Excellence for Alzheimer's Disease. She has prescribed Linda Lisicki donepezil, an oral enzyme blocker, as well as led her through a clinical trial for a new intravenous medication.
The research is arduous. More than 95 percent of drug trials internationally have failed.
"Alzheimer's disease is one of the most difficult diseases to study," Szigeti said. "It's a human disease. You don't see it in animals," so animal studies have been of limited use. "The other big challenge is by the time there's disease, there's a 60 percent cell loss in the brain, so we are trying to study something that's not even there anymore, something that died, the empty shells of cells."
More challenging still, she said, is that genetic studies have shown dementia is not just one disease but a group of disorders that progress slowly, requiring those with the condition to be studied over a period of many years.
Szigeti and other researchers believe genetic breakthroughs, preventative care and early diagnosis will continue to help those with cognitive diseases. Today's medications slow progression, she said, "so you can spend more time in good shape. The way I phrase it to patients is, 'We are trying to keep you as good as you are for as long as we can.'"
The walk through Alzheimer's or other dementias will be somewhat different for every person, every family, Szigeti said.
"Try to get ahead of this early," she said. "This is really key, and starts with diagnosis as early as possible. The mean age for Alzheimer's is 73. If you come in at the onset, when you maybe just have memory problems, we can give you another three to seven good years until you go to a higher stage dementia. By then, you are 80."
She also recommended patients try to get their finances in order, and consider long-term health and end-of-life matters near the start of their disease, “when you are fully capable of making your own decisions.”
The new Center of Excellence can be part of that process.
"Our goal is very much educating and informing our colleagues and giving them the tools so they can recognize these diseases," Troen said. "And early recognition doesn't mean you start throwing medications at people. What you really have to do is recognize the impacts of dementia – which are very far reaching – and come up with a broad-based approach to help the person, and his or her family, deal with the disease."
The Lisickis have chosen such a thoughtful approach. Stephen is thankful he's retired. He isn't sure how he and his wife could manage as effectively otherwise.
"You try to live life but you try to be proactive," he said. "You try to prepare. The one good part is we spend more time together."
The most challenging part?
"Being together all the time," both said, with a laugh.
Stephen Lisicki said it's hard to understand how someone can take care of a parent or someone in a similar circumstance if not with them most or all of the time. "I wonder sometimes why they don't pay caregivers. The government will pay all kinds of money for nursing homes but they won't pay a child or spouse."
Troen said he is optimistic about a cure, someday. Big projects, big changes, tend to take time.
"I think while I'm an optimist, the realism creeps in and I ask, 'What do we do to create the best possible environment so that even in a setting where somebody has significant dementia, they still get the best quality of life possible? That requires us," he said, "to have a very broad-based, interdisciplinary approach."
SPECIAL EVENT – FAMILY CAREGIVING ESSENTIALS
When: 8:30 a.m. to 2 p.m. Saturday, Nov. 11
Where: University at Buffalo Center for Tomorrow, North Campus, Maple and Flint roads, Amherst
Includes: Workshops and information from more than 40 experts on caregiving, geriatrics, functional medicine, dementia, Parkinson’s, veteran care, finances, legal matters and end-of-life care. Many are volunteers with the Erie County Caregiver Coalition; some are with Erie County Senior Services.
Cost: Free but you must register at healingcaregivers.com or by calling 775-5748.
Why go: As many as 70 percent of family caregivers admit to feelings of depression, according to the National Alliance for Caregiving. Nearly three quarters of family caregivers report not going to the doctor as often as they should and more than half say they skip doctor appointments for themselves. Thirty percent of single female caregivers consider bankruptcy.
Hosts: Healing Caregivers, WNY Refresh
DEMENTIA FACTS AND FIGURES
Alzheimer’s and related diseases
– Sixth-leading cause of death in the U.S.; every 66 seconds, someone in the nation develops one of these.
– One in three older adults dies with one of those diseases, which kill more than breast and prostate cancer combined.
– Roughly half of those 85 and older experience some type of cognitive decline.
– Those 65 and older make up 13 to 14 percent of the overall U.S. population; that figure stands at about 16 percent in Erie County – one of every six people – and is expected to hit 20 percent by 2025.
– More than 15 million caregivers provided an estimated $18.1 billion of free care in 2015.
Family caregivers spend more than $5,000 a year for someone with Alzheimer’s. For some families, that means skipping a vacation; for others, it may mean going hungry.
10 WARNING SIGNS OF ALZHEIMER’S
Memory loss that disrupts daily life
Challenges in planning or solving problems
Difficulty completing familiar tasks at home, work or play
Confusion with time or place
Trouble understanding visual images and spacial relationships
New problems with words in speaking or writing
Misplacing things and finding it hard to retrace steps
Decreased or poor judgment
Withdrawal from work or social activities
Changes in mood and personality
“Dementia is not just about Alzheimer’s,” said Dr. Bruce Troen, co-director of the Center of Excellence for Alzheimer’s Disease in Western New York. “It can be about any progressive, cognitive impairment.” Among the types:
Alzheimer’s: The most common type of dementia accounts for 60 to 80 percent of dementia cases. Difficulty remembering recent conversations, names or events are often early symptoms. Later symptoms include impaired communication, poor judgment, disorientation, confusion, behavior changes and difficulty speaking, swallowing and walking.
Vascular dementia: Commonly associated with those who have a history of cardiovascular disease, this accounts for about 10 percent of dementia cases. Symptoms include impaired judgment or ability to make decisions.
Front of temporal based dementia: Nerve cells in the front and side regions of the brain are especially affected. Symptoms include changes in personality and behavior, and difficulty with language.
Lewy-Body dementia: This diagnosis requires an ongoing decline in thinking skills, along with two of the following: visual hallucinations, Parkinsonism or fluctuating alertness. Sleep disturbances and instability in blood pressure and heart rate also are possible.
Sources: The Center of Excellence for Alzheimer’s Disease of WNY, Mayo Clinic, Alzheimer’s Association
CENTER OF EXCELLENCE FOR ALZHEIMER'S DISEASE IN WNY – A CLOSER LOOK
Contact: (ubcead.org; 829-5432)
Focused on helping doctors better detect, screen, diagnose, and care for Alzheimer’s and other forms of dementia, while also helping health professionals, patients and families connect to related services. The center estimates there are 24,000 people with Alzheimer’s and other dementias in the seven counties it serves: Erie, Niagara, Allegany, Cattaraugus, Chautauqua, Genesee and Wyoming.
Goals: Creating a better diagnosis protocol, including earlier diagnosis and treatment; holistic-based treatment with the goal of better life and fewer related ER visits; helping with clinical trials that include treatment advances while seeking a cure.
Team: Co-directors Dr. Kinga Szigeti, a neurologist, and head of the UB Alzheimer’s Disease and Memory Disorders Center, and Dr. Bruce Troen, a geriatrician, director of the UB Center for Successful Aging, and chief of the medical school's Division of Geriatrics and Palliative Medicine; Executive Director Leilani Joven Pelletier, who worked nearly 16 years at the Alzheimer's Association of WNY, half of that time as executive director; nurse practitioner Linda Steeg, a clinical associate professor in the UB School of Nursing; registered nurse Alison Case; and social workers Mary Karpinski and Mark Ramos.
Strategic partners: University at Buffalo staff, students and affiliated physicians; Alzheimer’s Association of Western New York; Alzheimer’s Caregiver Partnership; Dent Neurologic Institute; Geriatric Center of WNY (and Dr. Kenneth Garbarino); the Geriatric Evaluation and Management Clinic at the VA Medical Center.
WHERE TO GO FOR MORE INFORMATION AND SUPPORT
NY Connects (aging.ny.gov; 800-342-9871): Another starting point for those looking for caregiving services through local agencies, including the Erie County Department of Senior Services or outlying county Offices for the Aging, as well as a variety of supports for families dealing with loved ones of any age who have a range physical and mental health conditions.
Alzheimer’s Association of WNY (alz.org/wny; 800-272-3900): Provides information on health care, services and more than 30 support groups across the region for those with Alzheimer’s, other dementias and any kind of memory loss, as well as their loved ones.
Erie County Caregiver Coalition (eriecountycaregiver.com; 858-8526): Provides links on its website to help caregivers in a variety of ways, including with health care questions, home safety assessments, advanced care planning, transportation and proper nutrition.
CASE Niagara (caseniagara.com; 285-8224, Ext. 215): Provides information and links to agencies and programs that help those who care for the frail, chronically ill and disabled of all ages in Niagara and nearby counties.
State Department of Health (health.ny.gov/facilities/nursing): The department website shares information about home care, as well as assisted and skilled living facilities, including how to select one, profiles of each one, their deficiencies and a list of patient rights.
Long Term Care Ombudsman Program (bit.ly/2hxHk9h; 817-9222): People Inc.-administered program places family advocates at many regional assisted living and skilled nursing facilities to serve as a go-between to bring concerns of loved ones to staff and administrators.
Health insurance companies: “I always encourage people to contact their health insurance company to see if they have any programs that may help,” said Sarah Harlock, program director for the Integrative Center for Memory at Dent Neurologic Institute in Amherst. “It may be a care coordination program, a disease management program, or a palliative care program.”
Center for Elder Law and Justice: (elderjusticeny.org; 853-3087): Lawyers, University at Buffalo law students, social workers and others volunteer their time to provide free legal advice on civil matters related to caregiving.
Visiting Nurses Association of WNY (vnawny.org; 630-8000): The largest of several home health care agencies in the region, it provides various levels of care designed to keep those with medical needs in their homes for as long as possible.
Respite care: The Erie County Department of Senior Services and the Alzheimer’s Association of WNY work to help local faith based communities as well as other community sites to provide a free,monthly 4 hour volunteer run respite program for those living with dementia. Currently, these programs are provided at 10 sites and growing, including the C. Dee Wright Community Ministry Center in Akron, the Trinity Old Lutheran Church in Amherst, the Clarence Senior Center, the Baker Memorial United Methodist Church in East Aurora, the Eden United Methodist Church, the Golden Age Center in Grand Island, the Hamburg United Methodist Church, the Springville First United Methodist Church, St. Gregory the Great Church in Williamsville, and St. David's Episcopal Church in West Seneca. For more information for programs across the region, contact the association at 800-272-3900 or email firstname.lastname@example.org
Power Tools for Caregivers: County senior agencies, in cooperation with health departments, coordinate these classes across the country, including in the region. The six-week sessions run once a week and teach caregivers how to reduce stress, improve self-confidence, better communicate feelings and locate helpful resources. Caregivers also learn how to make tough decisions and balance their life needs. The $25 cost includes a handbook. Click on the Caregiving Tab, then Powerful Tools for Caregivers tab at www2.erie.gov/seniorservices to find classes in Erie County or call Erie County Senior Services at 858-2177. The next class starts Nov. 15.
Early signs of dementia Normal aging
Forgetting names of those close to you Forgetting names of those you rarely see
Forgetting things more often Briefly forgetting part of an experience
Repeating phrases or stories in same conversation Not putting things away properly
Unpredictable mood changes Mood changes with an appropriate cause
Decreased interest in activity, Changes in interests
difficulty making choices
Twitter: @BNrefresh, @ScottBScanlon