College student learns about Alzheimer’s through work and personal experience

As a college student, Evan Holler didn’t think about Alzheimer’s, but after talking with someone who worked for the Alzheimer’s Association, he decided to pursue an internship with the organization. When he called his family to share the news, he was shocked to learn his grandfather was diagnosed with the disease. Holler now works with a passion to fight Alzheimer’s so that others won’t have the same experience.

Like most college students, Alzheimer’s wasn’t something I thought about. In fact, I knew little about the disease – other than it robbed people of their memories. Then I happened to talk to a friend of mine who worked for the Alzheimer’s Association and I thought that interning with the organization could be a chance to offer my help while gaining some work experience. It felt invigorating and empowering to think of beginning a career this way. At that time, I didn’t know Alzheimer’s intimately.

Soon after, I called my family to share the news of the internship. That is when they informed me of my grandfather’s recent diagnosis with the disease. BAM! Alzheimer’s sucker-punched me. Now I had a personal reason to fight. The day I began the internship, I simultaneously gained a clear sense of purpose for my career while coming face-to-face with Alzheimer’s. This was the day I began to lose someone I love to this insidious disease. I discovered a new form of heartbreak that millions have experienced before me – millions of people I would hope to serve.

My grandfather, a person who has helped shape my world, can no longer remember his favorite life moments – like that he was the first person to hold me as a baby. Soon, he will not recognize my face.  And I’ve learned that Alzheimer’s affects more than just the individual living with the disease. It is a devastating force that multiplies; it affects everyone caring for, or about, the person with the disease.

And everyone will try and hold on, as the person with Alzheimer’s begins to slip away into a dark and viscous abyss of amyloid plaques and tangles. The loving moments we share as humans are the moments I fight for every day. What are we if not the love and life we have together as people?

I work harder and with newfound passion so that others won’t experience the despair I now do when my beloved grandfather forgets my name. I fight to protect families like mine who watch their loved ones’ minds fade and memories disappear. I fight for those who endure a debilitating weight of stress as they watch the person they love disappear without actually dying. I fight for the precious memories we have that take a lifetime to collect that then painfully and nightmarishly vanish. I must fight, because the day I joined the Alzheimer’s Association was also the day my grandfather didn’t know he was talking to me.

My grandfather will forget, but I will fight for a generation of young people who always remember. Our generation must make Alzheimer’s disease a priority or we are doomed to inherit this disease in exponential proportions. This disease may try and knock us out – but we must all fight back.

This blog originally appeared here.

About the Author: Evan Holler is a student at the University of North Florida in Jacksonville.

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The reality of Alzheimer’s

“Imagine being in your adult body, trying to talk to your family and unable to find the words to explain. Imagine walking into a room and being unable to identify your surroundings. Imagine people smiling warmly at you as they greet you by name and you have no idea who they are. This is the sad reality of Alzheimer’s disease.”

The Reality of Alzheimer’s

We asked people on the Alzheimer’s Association, Greater Illinois Chapter Facebook page to share their personal experience with Alzheimer’s disease. Story submitted by Andrea L. Pye.

When I was younger I didn’t realize how lucky I was to have both my grandparents and great-grandparents in my life. When I was in elementary school and we celebrated Grandparents Day, I realized my friends didn’t have great-grandparents to love and spend time with them. Although Nannie and Papa were my great-grandparents, they never seemed old to me. Papa would laugh and tease my brother and me. He was always laughing and being silly. Nannie would sit on the floor and play games with us, bake cookies and tell us stories of when she was young.

For as long as I can remember, I loved visiting my Papa and Nannie. We always had fun when they came. They visited our house regularly when we lived in Chicago, Atlanta and closer to them in Missouri. We often visited their house too. They lived in the country and it was fun to drive out to their house. There were always a lot of people at their home; my grandparents, aunt, uncle, cousins and lots of family friends. My Papa and Nannie loved family gatherings and always wanted everyone there for every holiday, summer barbecues and vacation trips. One of my favorite memories was a trip to Silver Dollar City for my birthday. Papa bought me a huge stuffed panda bear and carried it around all day for me. I still have it today and it’s very special to me.

One day, when we were visiting, something happened that made me realize that Papa wasn’t well. He kept telling my grandmother he wanted to go home. He was very insistent and his voice grew louder and louder. This was the only place he had lived since I was a baby; I didn’t understand what he meant. My grandmother talked to him in a quiet voice, asking him to describe where he wanted to go. Could he give her directions so she could take him? My mother talked about events she shared with him in his house and how much she loved his home. She recalled her getting off the school bus with her girlfriends here. Then she laughed as she remembered his teaching her how to change the oil in her car, check the tire pressure and change a flat tire. She talked about the first time she brought me to his house. He simply didn’t remember.

As these episodes increased, my family had to monitor his activities more closely. He always enjoyed being outdoors, going for walks in the woods, driving over country roads. He didn’t understand he couldn’t do these things any longer on his own or without help. He thought our family wasn’t treating him fairly and would get very angry. Then after he would get upset, a little later he would become calmer, more in control. He wasn’t the same fun-loving man we all knew. He didn’t talk as much with us. He was quieter and withdrawn. In his lucid moments, I think he realized he had problems. I don’t know if he ever understood the cause.

Finally, my mom told us that my Papa was sick. The doctors had diagnosed him with Alzheimer’s disease. She said the disease might affect his actions. He may say things we don’t understand and seem angry. He may not always recognize us or remember things. We would need to be understanding and patient and remember he doesn’t have control over what is happening to him. It was most important that we remember how much he loves us and we need to show him how much we love him too.

As the Alzheimer’s disease progressed it not only changed my Papa, but also had a big impact on my family. As his health declined, all our events and activities had to be scheduled at his home since he wasn’t able to travel. He needed to stay where he felt safe. He became too agitated in strange environments. If he did go anywhere, the time was limited and needed constant supervision. We visited him more often, my mom called at least once a day to check on him and my Nannie. It was important that we constantly tell him how much he is loved. We took every opportunity to talk to him and hug him.

As time went on Papa became more distant and quiet. He would sit in his chair or lay in bed, staring at the ceiling. He had long conversations with people he saw on the ceiling and he wanted us to talk to them too. Many times he told us he was talking with family members or friends who had died. He was adamant they were in the room with us. He especially liked to talk to this beautiful red-haired girl. This brought a huge smile to his face and he loved that girl. One day as my Nannie sat by his bed he asked her to get his wife for him. My Nannie was so hurt that after sixty years of marriage he didn’t remember her. She knew he couldn’t help it, so she continued talking with him about the red-haired girl. She realized the beautiful red-haired girl he talked with regularly, was my Nannie as he remembered her when they were young. He may not always recognize her now, but he always remembered how much in love they were.

My Papa’s decline started slowly and took several years. It was emotionally and physically difficult on everyone. My family sought information from many resources; one contact leading the way to another. This was a learning process. It’s why I think it important that our medical doctors and nurses help families with support associations. It doesn’t matter how much service is available if it can’t be readily available. We must continue research help find the cause for Alzheimer’s disease, develop new drugs and treatments.

Imagine being in your adult body, trying to talk to your family and unable to find the words to explain. Imagine walking into a room and being unable to identify your surroundings. Imagine people smiling warmly at you as they greet you by name and you have no idea who they are. This is the sad reality of Alzheimer’s disease.

As I begin my college career majoring in nursing at University of Alabama, I will always keep the memory of my Papa in my mind.  I learned that Alzheimer’s disease, and other illnesses, can be so difficult on the family members. I made a promise to myself to always help the families as well as my patients. They need love, caring and support too. My family was lucky to have such support within our family and friends, but that’s not always the case. I hope I am able to fill that spot for a family if it’s needed.

My Papa was one of the greatest people I will ever know. He was always there to help family and friends in need. He led by example and I know he will be proud of me for pursuing a career in nursing and helping others just like he did.

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New Alzheimer’s Association report shows growing cost and impact of Alzheimer’s

For the first time, total payments exceeded a quarter of a trillion dollars ($259 billion) for caring for people living with Alzheimer’s or other dementias, according to data in 2017 Alzheimer’s Disease Facts and Figures, released this week by the Alzheimer’s Association. In addition, the Facts and Figures special report, Alzheimer’s Disease: The Next Frontier, highlights advances in research and the growing importance of biomarkers in improving how we identify and diagnose Alzheimer’s. Share the facts and join the fight against the disease.

PREVALENCE

The number of Americans living with Alzheimer’s disease is growing — and growing fast. An estimated 5.5 million Americans of all ages have Alzheimer’s disease.

Of the estimated 5.5 million Americans living with Alzheimer’s dementia in 2017, an estimated 5.3 million are age 65 and older and approximately 200,000 individuals are under age 65 and have younger-onset Alzheimer’s.

• One in 10 people age 65 and older (10 percent) has Alzheimer’s dementia.
• Almost two-thirds of Americans with Alzheimer’s are women.
• African-Americans are about twice as likely to have Alzheimer’s or other dementias as older whites.
• Hispanics are about one and one-half times as likely to have Alzheimer’s or other dementias as older whites.

Because of the increasing number of people age 65 and older in the United States, particularly the oldest-old, the number of new cases of Alzheimer’s and other dementias is projected to soar. Today, someone in the United States develops Alzheimer’s dementia every 66 seconds. By mid-century, someone in the United States will develop the disease every 33 seconds.

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JOIN THE CAUSE

MORTALITY

Alzheimer’s disease is the sixth-leading cause of death in the United States. It is the fifth-leading cause of death among those age 65 and older and a leading cause of disability and poor health.

As the population of the United States ages, Alzheimer’s is becoming a more common cause of death. It is the only top 10 cause of death that cannot be prevented, cured or even slowed.

Although deaths from other major causes have decreased significantly, official records indicate that deaths from Alzheimer’s disease have increased significantly. Between 2000 and 2014, deaths from Alzheimer’s disease as recorded on death certificates increased 89 percent, while deaths from the number one cause of death (heart disease) decreased 14 percent.

Among people age 70, 61 percent of those with Alzheimer’s are expected to die before the age of 80 compared with 30 percent of people without Alzheimer’s — a rate twice as high.

INVEST IN A WORLD WITHOUT ALZHEIMER’S.

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CAREGIVERS

In 2016, 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer’s and other dementias, a contribution to the nation valued at $230.1 billion.

• Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older.
• 41 percent of caregivers have a household income of $50,000 or less.
• Approximately one quarter of dementia caregivers are “sandwich generation” caregivers — meaning that they care not only for an aging parent, but also for children under age 18.

Alzheimer’s takes a devastating toll on caregivers. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional, financial and physical difficulties.

CARING FOR SOMEONE WITH ALZHEIMER’S?

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COST TO NATION

The costs of health care and long-term care for individuals with Alzheimer’s or other dementias are substantial. Dementia is one of the costliest conditions to society.

Total payments in 2017 for all individuals with Alzheimer’s or other dementias are estimated at $259 billion. Medicare and Medicaid are expected to cover $175 billion, or 67 percent, of the total health care and long-term care payments for people with Alzheimer’s or other dementias. Out-of-pocket spending is expected to be $56 billion.

Health care costs increase with the presence of dementia.

• People with Alzheimer’s or other dementias have twice as many hospital stays per year as other older people.
• Medicare beneficiaries with Alzheimer’s or other dementias are more likely than those without dementia to have other chronic conditions.
• People with Alzheimer’s or other dementias make up a large proportion of all elderly people who receive adult day services and nursing home care.

Total per-person health care and long-term care payments in 2016 for Medicare beneficiaries with Alzheimer’s or other dementias were over three times as great as payments for other Medicare beneficiaries. Average per-person out-of-pocket costs for Alzheimer’s and other dementias are almost five times higher than average per-person payments for seniors without these conditions.

Total annual payments for health care, long-term care and hospice care for people with Alzheimer’s or other dementias are projected to increase from $259 billion in 2017 to more than $1.1 trillion in 2050. This dramatic rise includes more than four-fold increases both in government spending under Medicare and Medicaid and in out-of-pocket spending.

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SPECIAL REPORT — ALZHEIMER’S DISEASE: THE NEXT FRONTIER

In the history of medicine, one means to progress is when we make the decision that our assumptions and definitions of disease are no longer consistent with the scientific evidence, and no longer serve our health care needs. The arc of scientific progress is now requiring a change in how we diagnose Alzheimer’s disease. Both the National Institute on Aging – Alzheimer’s Association (NIA-AA) 2011 workgroup and the International Work Group (IWG) have proposed guidelines that use detectable measures of biological changes in the brain, commonly known as biological markers, or biomarkers, as part of the diagnosis.

The development and validation of Alzheimer’s disease biomarkers — including those detectable in the blood or cerebral spinal fluid, or through neuroimaging — is a top research priority. It has the potential to markedly change how we diagnose Alzheimer’s disease and, as a result, how we count the number of people with this disease.

As research advances a biomarker-based method for diagnosis and treatment at the earliest stages of Alzheimer’s disease, we envision a future in which Alzheimer’s disease is placed in the same category as other chronic diseases, such as cardiovascular disease or diabetes, which can be readily identified with biomarkers and treated before irrevocable disability occurs.

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ALZHEIMER’S DISEASE FACTS IN EACH STATE

The 2017 Alzheimer’s Disease Facts and Figures report contains data on the impact of this disease in every state across the nation. Click below to see the effect that Alzheimer’s is having in your state.

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Deadline approaching – Alzheimer’s

The deadline for our matching gift challenge will be here soon — don’t miss this opportunity to make TWICE the impact in our fight against Alzheimer’s disease.
The Pine Family Foundation of Austin, Texas, has generously pledged $100,000 to the Alzheimer’s Association if we can raise that same amount by March 15. By directing support to individuals and institutions studying Alzheimer’s and other dementias, the foundation hopes to play a role in the development of more effective treatments, prevention and, ultimately, a cure.
According to the just-released Alzheimer’s Association 2017 Alzheimer’s Disease Facts and Figures report, 5.5 million Americans are now living with Alzheimer’s. The new information in this report is a call to action for all of us who support our vision of a world without Alzheimer’s.
Today, your tax-deductible gift of $35 can become $70, $60 can become $120, or an especially generous gift of $120 can become $240.
We need your help to take advantage of this special opportunity while there’s still time. Please show your support for the more than 5 million Americans living with Alzheimer’s and their over 15 million caregivers by making a donation today that can go twice as far to fund care and support services and accelerate critical research.

P.S. Help us reach our $100,000 goal by March 15. Please support our matching gift challenge today.

Your donation will strengthen our efforts to advance Alzheimer’s care, support and research. From face-to-face support to online education programs and promising global research initiatives, your gift makes a difference in the lives of all those affected by Alzheimer’s and other dementias in your community and across the world. Thank you for your continued support.

Alzheimer’s Association National Office, 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601

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Learn from the comfort of your home in March – Dementia

NEW TOPICS:
Legal and Financial Considerations in Dementia:
Three Things You Can Do Today
Paying for Alzheimer’s Care: What Resources are Available
Managing Agitated Behavior in Dementia

1 Educational Program by Phone

Legal and Financial Considerations in Dementia: Three Things You Can Do Today

Tuesday, March 14
noon to 1 p.m.
Megan Wood, JD
Prairie State Legal Services
A few simple legal and financial preparations will protect you and your family when Alzheimer’s or another dementia has been diagnosed – if you act in time. Join us as we hear from an eldercare attorney about the specific steps you can take on your own, or with a lawyer, to give you some peace of mind about the future.

2 Webinars: Live Interactive Programs Conducted Through The Internet

Paying for Alzheimer’s Care: What Resources are Available
Wednesday, March 8
10:00 – 11:00 a.m.
OR
2:00 – 3:00 p.m.

Caring for someone with Alzheimer’s disease is a huge financial burden. This webinar will introduce you to resources for which you may be eligible. You will also have the opportunity to ask questions of an expert in the field of dementia care.

Managing Agitated Behavior in Dementia
Tuesday, March 28
11:00 a.m. – 12:00 p.m.
OR
2:00 – 3:00 p.m.

When a person with dementia experiences agitation, the resultant behaviors can be very difficult to manage. Geriatric psychiatrist Dr. Stephanie van Ulft will discuss pharmacological and non-pharmacological approaches, and how to determine the best option depending upon the situation.

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