Learning to Thrive with Alzheimer’s on the East End

There’s a lot of quiet work being done right now in the fight against Alzheimer’s disease and other forms of dementia, which many doctors believe could become the greatest health care challenge of the 21st Century, as the global population ages and as people live longer lives.

Much of that work centers around providing support for caregivers, often unpaid family members, who do the vital and constant work of helping people who have dementia live full lives.

The Alzheimer’s Association’s Long Island Chapter held a two-day online conference for caregivers called “Thriving at Home on the East End” in mid-May, to provide information about the growing number of resources for people living with Alzheimer’s disease here.

Alzheimer’s disease causes a long-term decline in cognitive abilities and motor function and is ultimately fatal. There is currently no cure, though early detection and management of risk factors can stave off or prevent this disease. 

Nearly 6 million people in the U.S. and 54,000 people on Long Island are currently living with an Alzheimer’s diagnosis. And as people live longer, these numbers are expected to rise — by 2050 the number of U.S. cases is expected to ballon to 13 million. According to the Alzheimer’s Association, one in nine people over the age of 65 has Alzheimer’s disease, and one in three seniors who die have Alzheimer’s disease at the time of their death, though it may not be the cause of their death.

The Alzheimer’s Association is a nationwide nonprofit organization providing free programs and services for individuals with Alzheimer’s or other dementia, caregivers, families and professionals, and is the world’s leading non-profit funder of Alzheimer’s research.

Amyloid PET Scan imaging, which detects the plaques that cause Alzheimer’s Disease in the brain, is a crucial diagnostic tool that remains uncovered by insurance companies.
Amyloid PET Scan imaging, which detects the plaques that are believed to cause Alzheimer’s Disease in the brain, is a crucial diagnostic tool that remains uncovered by insurance companies.

The presenters at the East End conference discussed the latest research about the lifestyle changes most likely to positively impact patients, as well as communication strategies and helpful activities for caregivers and planning tools and support resources available here.

One of the biggest challenges caregivers find in learning to adapt to a loved one with dementia is the changes it causes in their loved one’s ability to communicate as they had in the past.

The Alzheimer’s Association’s Long Island Chapter Community Education Manager Elizabeth Robles stressed that, even as communication becomes more difficult, people with Alzheimer’s Disease still have a strong sense of self, and many communication difficulties arise when caregivers lose sight of “all the elements that make up the characteristics that make our loved ones unique.”

“How to remain connected with a person’s sense of self is key to effective communication,” she said. “Language abilities are going to change and communication needs are going to change.”

Ms. Robles said clear communication is essential in the early stages, when a person facing Alzheimer’s disease can still discuss their wishes for the future.

“It really is about person-centered planning,” she said. “I want to make sure that this journey is what they wish it to be.”

That communication can be as detailed as asking your loved one to what degree they’d like help when they forget a word — whether they would prefer to be given the opportunity to search for a word or would appreciate help finishing sentences.

She urged family members to not rush conversations with their loved one, and stressed the importance of face to face communication, to give the person facing the illness the opportunity to read non-verbal cues, which will become more and more important as Alzheimer’s progresses.

“Leave plenty of time for conversations,” she said. “Include the person in conversations that affect him or her, including planning for the future. Avoid making assumptions about what they want.”

In the middle stages, she said, people with Alzheimer’s disease often invent new words to describe familiar things, easily lose their train of thought, use familiar words repeatedly and have difficulty finding words. They often begin communicating through behavior rather than words.

She shared a video interview with a woman named Beverly, who is caring for her husband.

“You’re supposed to be one that’s reasonable. There’s only one thing you can control and that’s you. You can’t control them and their process,” said Beverly. “I would advise couples that you take your time and always count to three before you respond. This allows you to think about your answers.”

“Live in moment with them. Make sure you’re mindful of your tone of voice while having a conversation,” said Ms. Robles. “Our loved ones are really picking up on our tone of voice and body language. They need time to process what we’re trying to communicate with them.”

Repetitive questions are often one of the most frustrating things caregivers deal with at this stage.

“When seen from their perspective, their behavior can sometimes become understandable to you,” she said. “We want them to know we are there, listening to their concerns, and we want to provide a brief answer and respond to the emotion behind their statement.”

In the later stages, when verbal communication becomes much more difficult, Ms. Robles recommended finding ways to communicate using all five senses. She said many caregivers and their loved ones find it therapeutic to spend time on personal care — brushing hair, enjoying the feeling of the fabric of clothing, or protecting their skin with lotion. Listening to music and looking at photographs are also great activities, as well as going for walks or getting out of the house, which has been a struggle for many families in the Covid era.

“Even though they may have limited speech, the person in front of me that I’m caring for is an adult and still has their sense of self,” she said. “I want to connect with those aspects of who they are as a person.”

Vincent Ortolani, who runs the Caregivers Center at Peconic Bay Medical Center in Riverhead, discussed all the ways caregivers can help their loved ones thrive, including available community resources, giving patients a chance to prepare their health care wishes, and creating a care team. 

Mr. Ortolani urged caregivers to make a list of family members, neighbors, support groups and doctors who are able to help their loved one live a full life. He said most members of a caregiver’s support team fall into three categories — doers, who help with housekeeping, chores and projects; listeners, who give caregivers an opportunity to vent about their frustrations and troubleshoot issues; and people who provide respite, by engaging the caregiver in activities outside of their role as a caregiver — taking them for walks or out to dinner or focusing on self-care.

He also urged caregivers to know the role they will be playing in their loved one’s medical care.

“Never postpone medical care,” he said. “If you have any sort of acute situation — a fall or more onset of confusion or a big change in mental status or you’re simply not able to care for loved one, make sure you go to a hospital. It’s the only way you will be able to receive care in a timely manner.”

Mr. Ortolani said he often meets families at the hospital who decided to wait out issues too long at home.

He urged caregivers and their loved ones facing Alzheimer’s disease to make decisions early in the progression of the disease about who should be the patient’s health care proxy, and how to prepare advance directives — instructions from the patient regarding their end-of-life care.

“You’re not a visitor when you’re here for a loved one who’s confused,” he said. “You’re part of the care team. New York’s CARE Act requires hospital staff to ask a patient if they would like to be assigned a caregiver. You are part of the team.”

“Returning home, post-discharge, you have the same role,” he added. “Know the players and the clinical people you need to go to in case of an emergency. Our supports are available to anybody, whether or not they are a patient, or regardless of their involvement with the hospital.”

The PBMC Caregiver Center can be reached at 631.548.6259.

The Burner Law Group, lead by Britt Burner, has been at the forefront of providing legal services for people facing Alzheimer’s disease and their families. The practice is growing, with an office in Westhampton Beach and a new office opening in East Hampton.

Ms. Burner shared the latest information on New York’s rules regarding protecting assets while accessing Medicaid for long-term care, often a thorny subject as people who own property they’d like to pass on to their children begin to realize they need to make a financial plan for moving into a nursing home, which isn’t covered under Medicare.

Her office often works with older adults on putting their property into irrevocable trusts, which must be done, according to state law, at least five years before they need nursing home care.

There is currently no time requirement on when people need to place their assets into a trust if they want to access Medicaid to provide for care in their own homes, but New York has passed a law that is awaiting federal approval that would require those assets be placed in a trust at least 2.5 years before the care is needed.

Ms. Burner said the current guidance she is receiving is that the new law “does not come into play until January 1, 2022 or later.”

“There’s a very good opportunity for planning right now,” she said, adding that people who put their homes in trusts are still able to access the STAR property tax deductions, and are still eligible for a $250,000 income tax exemption if they sell their home.

“You just can’t access the principal,” she said. “If you could access it, Medicaid would want to use it to pay for the cost of care.”

The Burner Law Group can be reached at 631.954.2323.

Stony Brook University’s Center for Excellence in Alzheimer’s Care (CEAD) is involved with the diagnosis and treatment of Alzheimer’s disease, and it is also involved in clinical research.

No new Alzheimer’s medications have been approved in the last ten years, and those that have been approved merely temporarily slow the progression of the disease. 

While there has been much public attention to the current clinical trials of Lilly’s donanemab, which seems to have some effect on breaking up the  beta-amyloid protein plaques in the brain that are believed to cause Alzheimer’s disease, this drug is not yet approved by the FDA.

Abigail Kaske and Stephanie Roncone of CEAD said much of the clinical research they’ve been involved in regards lifestyle changes that help improve symptoms of dementia.

These changes include regular exercise and the Mind diet — which pairs a Mediterranean diet with the DASH diet (designed to reduce blood pressure), along with getting enough sleep and preventing hearing loss, which is often a precursor to Alzheimer’s disease.

“Three days a week of moderate exercise, 45 minutes a session, like brisk walking, shows an improvement of overall cognitive health,” said Ms. Kaske. With diet, “focus on fruits and vegetables, replace unhealthy fats like butter with healthy fats like olive oil and have fish and poultry at least twice a week.”

She added that these lifestyle changes can reduce the risk of Alzheimer’s disease by 35 percent, if started early.

“You do have some control over keeping your brain healthy,” she said. “What tends to be good for your body tends to be good for your brain. The more accurate and earlier your diagnostic process, the more you can treat this disease at its earliest stage, before there’s too much brain damage.”

Ms. Roncone pointed out the importance of getting as many people as possible to participate in clinical trials. 

“Hopefully, we will ultimately find a cure,” she said.

CEAD can be reached at 631.954.2323.

The Alzheimer’s Association’s Long Island Chapter runs support groups and workshops on a regular basis, often in conjunction with local libraries. Get involved by visiting alz.org/longisland

The national Alzheimer’s Association also has a 24/7 national helpline, available in many languages, at 1.800.272.3900.

June 20, the summer solstice, is “The Longest Day,” the Alzheimer’s Association’s annual fundraising activity date, and anyone is welcome to start their own fundraising activity in conjunction with this date.

“The day with the most light is the day we fight,” they say. Learn more at alz.org.

Beth Young

Beth Young has been covering the East End since the 1990s. In her spare time, she runs around the block, tinkers with bicycles, tries not to drown in the Peconic Bay and hopes to grow the perfect tomato. You can send her a message at editor@eastendbeacon.com

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