the end of alzheimer’s · 2017. 12. 14. · eventually, the zooks approached dick’s doc-tor...

THE END OF

ALZHEIMER’SSTARTS WITH YOU

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LNP | LANCASTER, PA2 DECEMBER 17, 2017

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To our Lancaster County friends and family: 2017 has been a year full of tremendous progress and

achievement here in Lancaster County for the Alzheimer’s Association Greater Pennsylvania Chapter. With your help, we have been able to provide assistance, care and comfort to the 14,000 county residents diagnosed with Alzheimer’s as well as their families and caregivers. Our Chapter knows the burden that Alzheimer’s disease and related dementia can place on a family, and we are proud to be right here in Lan-caster County to support those who need our help in their time of need.

Right now there are over 5 million people in the United States living with Alzheimer’s, including over 400,000 right here in Pennsylvania. Their struggles are daily, and they are real. The 673,000 caregivers in Pennsylvania will provide un-paid care to their loved ones at an estimated cost of nearly $9 billion. It is statistics like these that have helped fuel the Al-zheimer’s Association mission to increase our efforts in sci-ence, treatment and advocacy. We have made great progress over the past year but we still know there is a long way to go. That is why we need your help.

I encourage each and every one of you to stop by our Lan-caster County office, located at 706 Rothsville Road in Lititz. Our staff will be happy to speak with you about the programs

and services we offer to all Lancaster County residents. The Greater Pennsylvania Chapter would also love to have you join us for our signature events, such as The Longest Day on June 21, 2018, and Walk to End Alzheimer’s. It is events like these that help fund our mission to fight Alzheimer’s each and every day. There are also numerous opportunities to join us and volunteer on an event committee, in office, advocacy and so much more.

You can learn more about our work in Lancaster County, our programs and services, signature events, volunteer op-portunities and 2017 end of year donations at our Chapter website, www.alz.org/pa or by calling our 24/7 Helpline at 800-272-3900.

Alzheimer’s disease is a public health emergency and the Greater Pennsylvania Chapter is here for you and your loved ones whenever you may need us. We know that we cannot win this fight alone and we are proud to stand with all of Lancaster County and win this battle together. I wish you and your fami-lies the absolute best during this 2017 holiday season and look forward to seeing you at many of our upcoming events in 2018.

In friendship,

Gail Roddie-HamlinPresident and CEOAlzheimer’s Association, Greater Pennsylvania Chapter

FROM OUR PRESIDENT AND CEO

Gail Roddie-Hamlin

ALZHEIMER’S ASSOCIATIONLANCASTER, PA | LNP 3DECEMBER 17, 2017

Dementia crept slowly into their lives

A CAREGIVER’S STORY

On most days, Harriet Zook never stops moving.

She’s in constant motion as a caregiver for her husband, Dick, who was diagnosed with dementia, Alzheimer’s type, in July 2012.

“My job is to protect him and make sure he’s comfortable,” Harriet says. “I take care of him and make sure he has everything he needs.”

Dick, 85, says he’s grateful for the care Harriet provides.

“My wife is a wonderful caregiver,” he says.Then, he shows the touch of humor that has

helped him through his diagnosis, adding, “My wife is very busy, though. Sometimes, I have to make an appointment just to spend time with her.”

Harriet, 77, says this isn’t exactly the life she imagined for herself and Dick when they met on a blind date more than 50 years ago.

Harriet grew up in Bucks County and came to Lancaster in 1962 to teach school. She met Dick when a mutual friend needed a girl to accompa-ny him and his girlfriend on a double date.

“I thought, ‘OK, it’s a favor to my friend and that’s it,’ “ Harriet recalls, laughing. “And look where we are now.”

The couple has been married 53 years and has two daughters, along with three grandsons.

Dick was also an educator, teaching sixth grade in Eastern York School District.

The Zooks say dementia crept slowly into their lives.

“They say dementia begins before you realize it, and I know that’s true,” Harriet says. “Things will happen and then you’ll look back and say, ‘Oh yeah, I guess that’s why that happened.’ ”

For Harriet, she began to notice that Dick kept forgetting things.

“I would tell him three things and he would do one of them and he’d forget to do the other two, and I’d get really angry with him,” she says. “I kept thinking, ‘He should know better.’ At the time, I didn’t see myself as a caregiver. I saw my-self as a wife who was provoked by a husband who didn’t follow through.”

Eventually, the Zooks approached Dick’s doc-tor about his symptoms and received his official diagnosis.

For Dick, it brought anger, depression and the devastating realization that there’s no cure for

“One of the first words you need to learn when your family member gets this diagnosis is the word ‘patience.’ You need to learn patience and kindness.”

– Harriet Zook, caregiver

his disease.For Harriet, it brought a call to action.“The words ‘dementia’ and ‘Alzheimer’s’

weren’t even in our vocabulary,” she says, not-ing that she knew no one who had been touched by the disease. “I began reading and researching and finding out all I could about it.”

Along with getting Dick on medication for de-pression and anger issues, Harriet learned she had to change her outlook.

“One of the first words you need to learn when your family member gets this diagnosis is the word ‘patience,’ ” she says. “You need to learn patience and kindness.”

She also learned how to best respond when Dick gets confused.

“I started deciding when I would correct him if he said something wrong, and I decided that if it doesn’t hurt him, and it doesn’t hurt anyone else, the details of the story are not important,”

see page 4

LNP | LANCASTER, PA4 DECEMBER 17, 2017 ALZHEIMER’S ASSOCIATION

she says. “Memories are his to tell the way he chooses to tell them.”In group settings and when they’re around family and friends, Harriet prac-

tices patience while also encouraging Dick to participate.“I try to be as tolerant as I can with him, so he doesn’t feel belittled or inad-

equate, because I don’t want him to shut down,” she says.On a day-to-day basis, Harriet supervises Dick’s needs — from preparing his

meals to doling out his medication.At this point, he is still capable of taking care of his morning routine, including

getting dressed and bathing, but Harriet knows each day brings something new.“This is a disease of progression,” she says. “He used to be able to do things he

can’t do anymore.”Dick voluntarily surrendered his driver’s license, so he relies on Harriet to take

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him places, and she also frets about leaving him home alone.“I go out with friends to lunch sometimes, but my mind is not necessarily with

the person I’m having lunch with,” she says. “There’s always that worry in the pit of my stomach.”

For now, Harriet is content to be Dick’s caregiver — and Dick’s happy to have Harriet by his side. The couple acknowledges, however, that the day may come when Dick needs more specialized care, and Harriet has begun to explore op-tions beyond their home.

“I don’t want to use those services until we get to a point where he sees the need for them,” she says.

For now, she’s happy to fulfill the vow she took a half century ago.“I married him for better or for worse,” she says. “The vow means something

to me.”She finds contentment in the little things, including the moments when the

day winds down and Dick asks her to just sit with him while he reads or watches TV.

“Our townhouse is large enough that we can both have our own space, but he’ll say to me, ‘Harriet, why don’t you come in this room and sit with me?’ ” she says. “Is there a lot of interaction? No. Is he happy? Yes. Am I happy? Yes. We don’t have to talk or interact much, but it’s that togetherness that he likes. And you know what? It’s not bad for me, either.”


Why funding is more important than ever

ALZHEIMER’S ADVOCACY

Alzheimer’s, says Clay Jacobs, is something everyone should care about.

“It is the public health issue of this century,” says the vice president of programs and ser-vices for the Alzheimer’s Association Greater Pennsylvania Chapter.

There are currently close to 400,000 people in Pennsylvania diagnosed with the disease and even more unpaid caregivers — typically family members — who are affected by Al-zheimer’s.

“In the country, there are 5 million with the disease and even more people providing care,” he says. “The scariest piece of that number is that it’s predicted to triple by 2050.”

Jacobs says the numbers tell the story — it’s more important than ever to advocate for Al-zheimer’s funding for care for patients and re-search into a cure for the disease.

On a federal level, the organization is work-

ing toward helping the National Institutes of Health (NIH) secure an increase of $414 mil-lion in research funding dedicated to demen-tia.

“That would almost double the research funding,” he says. “It’s something we’ve really been driving for over the past three years, and we’ve seen great results. We want to continue that momentum.”

He says the organization is also pushing for increased support for palliative and hospice care at the federal funding level.

“Unfortunately, this is a fatal disease,” he says. “Everyone who has dementia would benefit from palliative care, but there are is-sues getting that for everyone.”

At the state level, the organization is also concerned with strengthening laws and regu-lations around elder abuse.

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“With the decreasing capacity of Alzheimer’s patients, there is a disproportion-ate number of victims of both financial and physical abuse,” he says.

The organization is also working closely with the Department of Aging to in-crease awareness of the disease and strive toward early diagnosis.

“Patients aren’t told early enough what their diagnosis is,” he says. “They’re told it’s senility or old age, or just a natural part of getting older. That makes it really hard to plan, get a jump on treatment, a whole slew of things.”

Jacobs says anyone interested in advocating for Alzheimer’s funding can do something as simple as sign up to sign online petitions at alz.org/advocate.

“Those who want to get a little more hands-on can join our advocacy program,” he says. “We have volunteers assigned to every congressional district, to write letters and to teach people how to be advocates and work with their local district office to make a change.”

Jacob points out that advocating for Alzheimer’s funding is not a political is-sue.

“In a time of conflicting politics, this is not a red or blue issue,” he says. “It’s a purple issue. It affects both sides of the aisle and it’s something we all should be able to agree on.”

He says in Pennsylvania, in particular, government support is strong for the organization’s mission.

“We have strong legislative support in Pennsylvania and it’s really growing,” he

says. “Our elected officials, no matter where you live in Pennsylvania, are part of this conversation.”

U.S. Rep. Lloyd Smucker, who represents most of Lancaster County in the House, recently joined the Congressional Task Force on Alzheimer’s Disease.

“I’ve spoken to quite a few constituents who have been impacted by this dis-ease,” Smucker says. “I’ve heard their stories, which are quite moving. Not only does it rob people who are afflicted with the disease, but it also takes a significant toll on the families and caregivers, and a financial toll as well.”

He says he’s working hard to increase NIH funds for finding a cure for the dis-ease.

“This disease affects a lot of people I know,” he says. “I have friends who have relatives who have been afflicted by dementia and Alzheimer’s. I’ve seen the im-pact the disease has on people’s lives. One of the ways we can improve people’s lives is to help find cures or at least treatment for diseases like this.”

Additional NIH funding for Alzheimer’s research will have a major impact on many people, he says, noting, “More funding will hopefully move us toward the place where we can make Alzheimer’s more manageable and find a cure.”

Jacobs sees a bright future for Alzheimer’s research and funding.“For our organization and our volunteers, we’ve seen things happen in the past

two or three years that five years ago would have seemed impossible,” he says, noting that volunteers have traveled to Washington when legislation was being introduced, only to see it passed within less than a year.

“It’s incredibly encouraging to see that consistent support,” he says. “There’s nothing like it when they’ve dedicated their time, energy and passion and shared their story, to see their efforts paying off. That alone is inspiring.”

He says his organization will continue to fight for additional funding for Al-zheimer’s research because there are always more people to help.

“We can do amazing things,” he says. “We’re helping 265,000 people a year, but that’s still a drop in the bucket. If we are able to accomplish our advocacy goals, millions of those impacted by this disease will potentially benefit.”

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The end starts hereWALK TO END ALZHEIMER’S

Like so many who participate in Lan-caster’s Walk to End Alzheimer’s, Reed Gooding had a very personal reason for

organizing his first team of walkers in 2014.His mother, Mary, was nearing the end of

her 13-year battle with Alzheimer’s disease — a battle that slowly robbed her of her job, her independence, her social life and the activi-ties she enjoyed, and robbed her family of the wife, mother and grandmother they loved.

Determined to fight back, Gooding, presi-dent of GSM Roofing, organized the GSM Memory Marchers and raised $33,000 in 2014. The following year, the team raised $56,000. They are at the top of the local lead-erboard again this year.

It’s a bittersweet victory for Gooding, whose mother died in 2015.

“Alzheimer’s is such a wicked disease,” he says. “It steals the most precious gifts, so I am determined to do more.”

In addition to his participation in the Walk to End Alzheimer’s, Gooding is also on the board of directors of the Alzheimer’s Associ-ation, Greater Pennsylvania Chapter, where he serves as sponsorship chairman for the walk committee.

“He just made it his mission,” says Frances Gibbons, constituent events manager for the Alzheimer’s Association.

The Walk to End Alzheimer’s, held locally at Clipper Magazine Stadium, is the orga-nization’s largest fundraiser. And thanks to participants like Gooding, it has grown expo-nentially over the years.

Since the local walk was first held in Long’s Park more than 15 years ago, participation has gone from a few hundred to more than 1,400 this year, Gibbons says.

Fundraising totals from this year’s walk in September stand at $265,163.32, which doesn’t include the additional $24,846 raised through the Extraordinary Give in November, Gibbons says. That represents a

Annual event raises awareness and much-needed funds for research, programs and services

“I think what makes the walk special is seeing a large group of people all with a committed vision of ending Alzheimer’s.”

– Reed Gooding, sponsorship chairman

In 2017, Alzheimer’s and otherdementias will cost the nation$259 billion

By 2050, these costs couldrise as high as

$1.1 TRILLION

20 percent increase over 2016.Of that amount, as much as 75 to 80 per-

cent will remain in Lancaster County to fund programs and services that the Alzheimer’s Association offers free to the public. Funds also go to support cutting edge research and a variety of online services and supports.

In all, the Greater Pennsylvania Chapter holds 25 walks in 59 counties each year. This year’s walks are expected to raise more than $2.3 million, Gibbons says.

Locally, the walk is a family-friendly and pet-friendly event, with vendor tables, games, and prizes for the top individual and team fundraisers. Participants can choose to walk a one- or two-mile route through the streets of Lancaster, beginning and ending at Clipper Magazine Stadium.

“I think what makes the walk special is see-ing a large group of people all with a commit-ted vision of ending Alzheimer’s,” Gooding says.

What also makes the walk special is its opening ceremony, which highlights stories of those affected by Alzheimer’s. Each par-ticipant receives a Promise Garden flower in a color that symbolizes their connection to the disease: blue for those living with Al-zheimer’s or dementia; yellow for caregivers, purple for those who have lost someone to the disease, and orange for those who sup-port the cause and the vision of a world with-out Alzheimer’s.

“A lot more people are affected besides the individual,” says Gibbons, whose father suf-fers from Parkinson’s-related dementia. “I want to make sure my daughter doesn’t go through what I’m going through.”

More than 5 million Americans are living with Alzheimer’s, a figure that is expected to jump to 16 million by the year 2050. More than 15 million people are providing unpaid care for them, Gibbons says, noting that 35

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percent of caregivers experience declining health and 60 percent will die before the person living with Alzheimer’s.

The disease and other dementias will cost the nation $259 billion this year and an estimated $1.1 trillion by 2050. The Walk to End Al-zheimer’s funds care and support for those living with the disease, as well as research.

Perhaps equally important, it fosters awareness.“I’m more about awareness first and fundraising after,” Gibbons

says. “We need to let them know that we’re here to help on that dif-ficult road. Money follows.”

Awareness means not only showing those affected by the disease that programs and services are available, but also showing those who want to help that the walk is a great way to make a difference.

“Everybody is touched by Alzheimer’s,” Gooding says. “Everybody wants to help, they just don’t know how ... Businesses should be-come involved because it affects every one of their employees.”

Recognizing the continued growth of the walk, the Greater Penn-sylvania Chapter is currently exploring other venues that could ac-commodate a large group of walkers more easily than downtown streets.

Gooding hopes that one day Lancaster’s Walk to End Alzheimer’s will be the largest fundraising walk in the county and possibly the largest Alzheimer’s walk in the state.

A lofty goal? Maybe. But the walk has already grown beyond what organizers ever thought possible, perhaps because so many of those involved, like Gooding, are personally invested in the fight and the ultimate goal — a cure.

As Gooding says, “Goals are meant to be big.”The Walk to End Alzheimer’s will be held in Lancaster on Sept. 29, 2018. For more information, visit alz.org/pa.

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Touched by Alzheimer’s? There’s a place to turn

LANCASTER COUNTY OUTREACH

The first sign that Lydia DelAssan-dro might have Alzheimer’s came on the day when she could not remember how to get to her hair stylist.

That might not seem too alarming, except that the Lancaster woman had been going to the same hair salon ev-ery six weeks, for 15 years. As she sat in her car, feeling alone and frightened, she wondered what was happening to her.

There were other symptoms that worried her and her family. At times, she would try to say something, but couldn’t find the words. She forgot to pay bills she had been paying every month for years. Once she let her be-loved dog out and forgot all about her, until the dog was frantically barking and pawing at the door.

“I just didn’t feel like myself. I kept

“A positive attitude can make a big difference. People can live for two to more than 20 years with Alzheimer’s. Will they deal with it as a glass half empty or a glass half full?”

– Candy Yingling, constituent events manager and education and outreach

coordinator

losing things and forgetting things,” DelAssandro says. “I still do.”

Losing things every once in a while or forgetting an appointment hap-pens to everyone. The difference with Alzheimer’s is that the person loses items more frequently. They may lose their car keys, but also forget what they are for. They may put things in the wrong place, like putting keys in the refrigerator. Like DelAssandro, they may suddenly get lost on their way to the hair salon, grocery store or in their own neighborhood.

DelAssandro was diagnosed with early stage Alzheimer’s and is under-going care to help her and her family deal with the disease that strikes one out of every eight people over 65. She admits that it is scary to know she has a progressive disease.

“Dealing with Alzheimer’s has a lot to do with attitude,” says Candy Yin-gling, constituent events manager and education and outreach coordinator at the Lancaster County office of the Al-zheimer’s Association. “A positive atti-tude can make a big difference. People can live for two to more than 20 years with Alzheimer’s. Will they deal with it as a glass half empty or a glass half full?”

The association opened its Lancaster County office, at 706 Rothsville Road, just east of Lititz, earlier this year.

“We are working to reach out to the community, with programs at retire-ment homes, community centers, churches and hospitals,” Yingling says. “One out of every three people will be touched by Alzheimer’s, whether as a

see page 11

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person diagnosed or a family member.”One of the most critical outreach

services is the Alzheimer’s Association Helpline. It is available 24 hours a day, seven days a week for anyone who is facing Alzheimer’s. Sometimes the call comes in the middle of the night.

There may be a family crisis, when the person with Alzheimer’s feels con-fused and agitated. The person may be packing his belongings and prepar-ing to leave the home, while his wife frantically calls for help. The trained Helpline responder can offer solu-tions or approaches to help calm the situation. If it is volatile or dangerous, it may be necessary to call 911.

Other calls might be less urgent, such as seeking a second opinion or finding resources for support groups, day care or respite care. As the disease progresses, those diagnosed with Al-zheimer’s may need 24-hour supervi-sion, and caregivers often need help. They may also need help choosing a living situation at a memory care cen-ter, when home care or visiting care no longer works.

“The Helpline offers a life line and lets people know they are not alone,” Yingling says.

They are not alone. In Pennsylvania, there are an estimated 400,000 people living with Alzheimer’s. Some 673,000 are affected by Alzheimer’s as a family member. The disease is frightening for the one diagnosed and for the family.

“We have six offices in Pennsylva-nia,” says Clay Jacobs, vice president for programs for the Alzheimer’s Asso-ciation. They include offices in Pitts-burgh, Harrisburg, Erie, State College, Wilkes-Barre and Lancaster.

It is estimated that at least 30,000 people in Lancaster County and York County are suffering from Alzheim-er’s or related dementia, he says. Al-zheimer’s appears to be on the rise, mostly because of better diagnosis and because people are living longer. Baby boomers are one of the largest popu-lations, and they are now in their 60s and 70s.

Those who are affected by Alzheim-er’s understand why the disease is called “The Long Goodbye.” It begins with memory problems, as once-healthy brain connections gradually stop functioning.

“Alzheimer’s disease is painful for the person and painful for the family

and friends,” Yingling says.The Lancaster County office is an

outreach to the community, offering information, research, programs, sup-port and help for those with Alzheim-er’s disease and their families. When the new office serving Lancaster and York counties opened in Lititz, it was a cooperative effort with Luther Acres, and its residents in memory care will benefit from the new office being close to the retirement community.

Other senior living communities in Lancaster and York counties have ac-cess to services, along with anyone liv-ing in either county who is affected by Alzheimer’s disease.

“Our goal ultimately is to find a cure for Alzheimer’s disease,” says Jacobs, noting that there are advancements in treatment that help lessen symptoms.

The Alzheimer’s Association offers information on the 10 signs of Al-zheimer’s, which include memory loss that disrupts everyday life, difficulty in completing familiar tasks, changes in mood and confusion with time or place. While medications cannot cure Alzheimer’s or stop it from progress-ing, they may help treat memory loss and confusion for a limited time. Liv-ing a healthy lifestyle with exercise, good nutrition, a positive attitude and even brain exercises can help, too.

Since the newest office opened in Lititz, people have been stopping by to get information, find out about pro-grams and learn about services and support groups. As Yingling points out, support groups can be helpful, both for the individuals diagnosed with Alzheimer’s disease and their families.

“There is no cure for Alzheimer’s yet, but awareness is critical,” she says. “This is a public health crisis that af-fects nearly everyone in the commu-nity in some way. That’s why we are here.”

The Alzheimer’s Association Helpline is 1-800-272-3900.

For more information about Al-zheimer’s services and programs, visit www.alz.org.

LNP | LANCASTER, PA12 DECEMBER 17, 2017

10 Warning Signs of Alzheimer’s disease

Memory loss that disrupts daily life

Challenges in planning or solving problems

Difficulty completing familiar tasks

Confusion with time or place

Trouble understanding visual images and spatial relationships

New problems with words in speaking or writing

Misplacing things and losing the ability to retrace steps

Decreased or poor judgment

Withdrawal from work or social activities

Changes in mood and personality

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the end of alzheimer’s · 2017. 12. 14. · eventually, the zooks approached dick’s doc-tor...

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