Early-Onset Alzheimer’s disease now covered under Social Security

On February 11, 2010, the Social Security Administration announced it will now include early-onset Alzheimer’s disease in its Compassionate Allowances initiative to help the number of early-onset or younger-onset individuals who are no longer able to maintain gainful employment because of their cognitive impairment.

While applicants would still have to meet other SSDI criteria and/or SSI criteria, under this initiative they are considered eligible by virtue of the disease and fast-tracked for a favorable decision about their eligibility for Social Security Disability (SSDI) and Social Security Income (SSI) benefits. The inclusion of early-onset (or younger-onset) Alzheimer’s disease, streamlines the SSDI/SSI application process allowing individuals to receive faster payment of their Social Security benefits.

Since 2003, The Alzheimer’s Association has advocated on behalf of individuals with Early-Onset Alzheimer’s as they navigate the Social Security disability process. This decision is a major step forward for their families.

Please visit http://www.alz.org/living_with_alzheimers_social_security_disability.asp for more information.

Know the 10 Signs

#10 Changes in Mood and Personality

"My boyfriend would tell me I was forgetting conversations we had. I was forgetting certain things yet retaining others, so he accused me of "remembering only what I wanted to remember." He also told me I wasn't the same person. I wasn't acting like my "old self." I often became irritated and aggravated with many things which was unlike my normal personality.

With the help of Early Diagnosis and Intervention with medication and treatment, I found out I wasn't going crazy. I found medications to slow down the AD process and therapy to help me cope with my disease. I am still an active member of society, do volunteer work, help take care of my mom who, also has Alzheimer's disease, and am still able to take care of myself. I am able to live alone and function pretty well. I have been able to put all my affairs in order so that my daughter won't have to face that when I can no longer make those decisions. I am able to participate in clinical trials of new medications which may be disease modifying.

Early Diagnosis and treatment has helped me and my loved ones make the best of the situation."

-Lisa Carbo

Know the 10 Signs

#5 Trouble with Visual or Spatial Relationships

"I felt my wife was nagging me about my driving; in my view, there was nothing wrong with it. I agreed to a meeting with my doctor to discuss her complaints. He agreed with her; he told me not to drive.

To foil their view and show them how wrong they were, I took a simulated driving test at Sister Kenny Institute in Minneapolis. I failed it miserably.

After a Neuropsychometric test, I was diagnosed as having Alzheimer’s disease.

The test told them I had substantial visual peripheral perception deficiency. This meant that I would see things but they had no meaning. This explained why I was screwing up driving, why I was falling after tripping over things in plain sight. It explained why I bumped into closed windows and was clumsy as could be.

My tripping and falling shattered a 12- year-old hip replacement that required surgery that had me on my back homebound, unable to walk, for 2 months. The recovery was rough. That was price enough! I am now on my feet ready to live again.

Knowing about the source of my clumsiness has helped me and my family create a safer environment. It has also given me the opportunity to pursue creative, social and fun activities as much as I want, which is very important to me. I just let my wife drive!"

-Mike Donohue

Know the 10 Signs

#3 Difficulty Completing Familiar Tasks

"The first sign for me was forgetting and having trouble at work. I was trusting my brain to be there and denying that something was wrong. The problem with that I was forgetting too many things and I thought it was menopause. I saw my OBGYN and she said that all was well. I then went to my primary care doctor and we did blood tests. Everything came back normal.

As time went on, it was getting worse and my family, friends and co-workers were growing very impatient with me, especially when I missed dinners or events that were planned. Working as a meeting planner was a more specific problem: I was not able to multitask as I had been for years. I could not remember things without writing them down, and then I could not find the paper with the note on them. And that was that...I had Younger-Onset Alzheimer’s Disease...

It was a blow, but I am not the type of person that gives up that easily. Now, I am active in my community, educating others about this disease and getting involved."

-Karen Zimmerman

Know the 10 Signs

#2 Challenges in Planning or Solving Problems

"One of the first indications that something was awry was missing appointments that were on my schedule. Frequently, I put times down wrong, or failed to follow the time I had down correctly, arriving too early, late or not at all.

Now that I am diagnosed with Alzheimer’s, I keep two schedules to avoid missing anything. At one time I didn’t keep a schedule. A busy lawyer, I had every appointment, deadline and due date in my head.

With Alzheimer’s, I know I need to take these extra steps and it helps me be able to continue to be active and involved."

-Mike Donohue

Know the 10 Signs

#1 Memory Changes that disrupt Daily Life.

"There was one episode with my memory that scared me a great deal. When I was trying to recall something, in my mind, a large black cloud appeared, covered the answer and it was gone.

I was on a bus on my way to visit my daughter when an elderly woman sat next to me. We began to chat as strangers do. During the conversation she asked where my daughter lived. I got out “Allen…” and that black cloud enveloped the rest. And I stammered, "No it's not Allentown, that's in Pennsylvania. It's not Allenberg, I never heard of that. It's Allen something or other." I must have looked as upset as I felt, because she patted my hand and said, "That's all right dear, we all forget things as we get older."

I know now that the black cloud wasn’t just a sign of aging. Once I was diagnosed and starting getting treated for Alzheimer’s, the black cloud disappeared."

-Mimi Steffen

Early Detection Matters

This week, the Alzheimer’s Association is launching its new Early Detection campaign, “Know the 10 Signs.” We’ve asked our Early Stage Advisors to contribute some of their personal experiences recognizing the signs of Alzheimer’s. These courageous individuals have all endured the arduous process of discovering their disease and have volunteered their energy to the Alzheimer’s Association to advance the most effective step in Alzheimer’s treatment: Early Detection.

Every day this week, we’ll be posting real stories of diagnosis and the relation of each to the 10 Signs of Alzheimer’s disease. For more information on the 10 Signs, please contact the Alzheimer’s Association at 877-IS IT ALZ (877.474.8259) or visit alz.org/10signs.

The Beginning

I've started writing my next book, a nonfiction collection of conversations with people in the early stages of Alzheimer's Disease. Here's an excerpt from the Introduction--- Please feel free to comment. I'd love to hear what you think!

Alzheimer’s disease.

Now close your eyes. What do you think of? Who do you see? I see an eighty-five-year old woman with short, white hair, wrinkled skin, and polyester pants. I see her forgetting when she ate breakfast and when she was born. Forgetting where the bathroom is and where she lives. Forgetting the name of the United States President and the names of her children. I see her forgetting her own name. Forgetting me. I see my grandmother.

You might have imagined your own grandmother. Or your elderly parent. Maybe you don’t know anyone with Alzheimer’s. Maybe you imagined Gena Rowlands in The Notebook or Julie Christie in Away From Her.

Most of us know what Alzheimer’s disease looks like. Or do we?

Like most people who come to know Alzheimer’s in a loved one, I’ve read and learned a lot about this disease, from the molecular and clinical to the self-help and how-to-care-for. But for the most part, what we know about Alzheimer’s is gleaned from experience with elderly people diagnosed well into the progression of this disease. Because we as a culture expect eighty-year-olds to be normally forgetful, because retired grandparents are no longer accountable to corporate bosses, because they don’t have to produce a certain number and quality of widgets each day, because they might be widowed and living alone with no one to regularly witness the full extent of what is happening, because it is far easier to deny what is happening well after we suspect it or even trip over it, we don’t usually see Alzheimer’s in its beginning.

And unfortunately, once this disease marches past the beginning, we can no longer really know what that beginning was like. Beyond the beginning, clogged synapses, faulty neurotransmission, inflammation, and cell death take the upper hand. Beyond the beginning, those parts of the brain that mediate memory and language and that inform awareness and identity become increasingly inaccessible. People with Alzheimer’s who’ve deteriorated past the beginning stages can no longer remember the recent time period of their personal history that was ‘the beginning’. They can’t describe what it feels like to have Alzheimer’s Disease because those communications skills aren’t working. And more confounding, they may no longer be capable of understanding that they even have Alzheimer’s disease.

We know what Alzheimer’s disease is like from the point of view of the tireless, loving caregiver. We know what it is like from the point of view of the Hollywood director. But, what is having Alzheimer’s disease like from the point of view of the person with Alzheimer’s? What does the face and voice of early-onset Alzheimer’s look and sound like?

Lisa Genova, Ph.D., author of STILL ALICE, www.StillAlice.com

Life Lessons from the Dementia Care Conference

I recently attended the annual Dementia Care Conference in Chicago. I was there to promote my novel, STILL ALICE, and to meet with and interview six people with early-onset Alzheimer’s Disease for my next book. Two of the six I’d already become good friends with over the past year. I knew the others more recently and less intimately. But I knew all of them only virtually, through emails and phone calls, and I couldn’t wait to know these friends of mine in three dimensions and in real time.

Early-onset Alzheimer’s is Alzheimer’s before the age of 65. My friends here are all young, in their forties, fifties, and sixties. They are all also in the early stages of Alzheimer’s, so they are still able to articulate their stories. I sat with each person and asked questions aimed at understanding what it is like to live with Alzheimer’s Disease. We talked about the things you might expect, about the dramatic changes that this disease precipitates—the abrupt end to fast-paced, high-powered, personally-fulfilling careers, a shift in or relinquishing of certain responsibilities at home, and planning for a new kind of future, one they never had imagined having to age into. We talked about loss of status, loss of friendships, anger, and denial.

But then, each and every person told me about the significant ways in which they are truly and deeply happy and at peace in their lives. Even now, I hesitate typing these words. I don’t want to oversimplify or minimize. I don’t mean to romanticize this disease. This disease is dark and brutal and rips apart neurons and relationships and dreams for the future. Maybe this is surprising to hear, but there was very little talk in these conversations of doom and gloom, heartbreaking sadness, the grim reaper lurking in the shadows behind us. What I witnessed, without exception and over and over, was a joy and gratitude for life.

I saw a mental calmness and clarity, not despair or emptiness. These individuals are highly focused on the stuff that matters and undistracted by the stuff that doesn’t. They have a laugh-out-loud sense of humor about their disease. They have a strong sense of purpose and spirituality and connection to God. They are all extremely present in their lives, available to their families and loved ones and unafraid of expressing their love for them. They are all exercising and eating healthy diets. They are all living fully in the moment, these friends of mine with Alzheimer’s Disease. I felt relaxed, happy, and inspired talking with them.

They and I realize that this is all for now. For now, Alzheimer’s is a story without a happy ending. For now, this disease eventually laughs in the face of Aricept and kicks Namenda aside as it marches on its path of destruction. But for now, Aricept and Namenda are holding their ground enough. For now, my friends with Alzheimer’s are able to actively participate in life, to advocate for people with Alzheimer’s, to enjoy their families and friends and what is beautiful in the world around them, and to love fully. And they do.

Lisa Genova, author of STILL ALICE, www.StillAlice.com

Hope in Your MRI

Over the past couple of years in my conversations with people with dementia, I’ve come across a lot of confusion over MRI’s and the diagnosis of Alzheimer’s. Many were surprised to learn that their brain MRI’s were perfectly normal AND they had Alzheimer's Disease. One woman was told by her physician that because her MRI was normal, she couldn’t possibly have dementia.

The truth is, especially if you’re in the early stages of Alzheimer’s, there will likely be no cellular loss visible on your MRI. You can be forgetting how to drive home a mile from your house and the MRI image of your brain can look completely normal. How can this be?

It used to be the standard thought that amyloid plaques and/or neurofibrillary tangles got deposited in the brain, and these deposits “gunked” up the neurons and caused them to die. And this neuronal death caused Alzheimer’s.

Here’s the new thinking.

The cognitive deficits–the symptoms of dementia–occur BEFORE the plaques form, before the neurons die. In the brain of someone with Alzheimer’s, there is too much of a soluble protein called Amyloid Beta 42. Either too much is made or not enough is cleared away. When too much is present in the synapse, these individual little peptides stick together and form small oligomers. These oligomers of Amyloid Beta 42 lodge in the synapses and interfere with synaptic transmission—the ability of neuron #1 to give it’s electrochemical information to neuron #2. Through a complex molecular cascade, these oligomers are specifically impairing neurotransmission through NMDA receptors, a very important kind of transmission necessary for something called Long Term Potentiation.

So these oligomers of Amyloid Beta 42 lodge in synapses and prevent good neurotransmission from neuron #1 to neuron #2. And behaviorally, new information isn’t learned. Or old information can’t be accessed. Synaptic plasticity suffers. Over time, because these synapses aren’t working properly and because of inflammation and other problems, those nerve axon terminals will retract. Eventually, unable to function, the neurons will die, leaving behind empty space (the atrophy seen on an MRI) and possibly heaps of Amyloid Beta 42 in amyloid plaques.

So it all starts as an attack on the synapses. The degree of dementia correlates only with synapse dysfunction, not with neuronal loss, not with number of plaques, not with atrophy on an MRI.

The cure for dementia then, the kind of treatments that will be disease-altering, will
1. Impede production of Amyloid Beta 42, or will
2. Increase clearance of already-produced Amyloid Beta 42, or will
3. Prevent Amyloid Beta 42 from sticking to itself so it can’t form oligomers, or it will
4. Rip these already-formed oligomers apart.

The beauty and the hope in all of these treatments—people suffering from symptoms of dementia can be treated BEFORE they’ve experienced any neuron death. If the synapses are fixed, neurotransmission can work again. Function can be restored!

Lisa Genova, author of STILL ALICE, www.StillAlice.com

How Did I Get Here?

How did I get here? So many of my roads have led me here, it must be inevitable. Let me start at the beginning.

Inspired by the stories by Oliver Sacks and a curiosity for understanding how the brain works to affect behavior and reveal who we are, I entered the graduate program in neuroscience at Harvard in 1994. I quickly became interested in the mechanisms underlying addiction, how the same drug administered chronically could hijack our natural reinforcement systems and dissociate wanting from liking. My lab bench was just down the hall from Rudy Tanzi and others who were working to crack the genetic code for Alzheimer’s. I graduated with a PhD in the spring of 1998 with a keen interest in the Alzheimer’s research being conducted down the hall, but I wouldn’t say I’d been directly touched by Alzheimer’s disease yet. That came next.

Looking back, my 85 year-old, widowed grandmother had been showing signs of dementia for years. But she was a smart and active woman, and she navigated around her symptoms with great skill for some time. And her nine children, their spouses, and her grandchildren were all content to look the other way or to pass off her cognitive mistakes to normal aging.

Then we got the phone call. She’d walked to the bowling alley at four in the morning, insisting it was middle of the day and wondering why no one was there. It was quite literally the wake-up call that forced my family to look directly at her and what was going on.

Her daughter, my Aunt Mary, moved into her house (along with my Uncle Barry) and began working from there. Her other daughters, my mother, and, less often, I came over to help out. With nothing we could actually do to alter the course of her disease, like spectators we all watched Alzheimer’s systematically disassemble the woman that was my grandmother. Ironically and almost immediately, she forgot who my Aunt Mary was. When we told her that she was her daughter, Mary, I was struck by how she never believed us and that this didn’t ruffle her. Before Alzheimer’s, if you’d told my grandmother that someone was her child who she believed wasn’t, she most certainly would’ve argued with you or laughed at you or both.

She was losing herself. I watched her studying her own face in the mirror, not comprehending the old woman’s face she saw. She didn’t know her last name, the time of day, to remember to go to the bathroom when she needed to, who her children were, who I was.

But although she lost her history and couldn’t understand who we were or why we were there (she told people my Aunt Mary was a homeless woman who’d wandered in to live with her), there were parts of my grandmother that never left her. As she always had, she loved lively company. We’re a loud, Italian family. She delighted in having us there, sitting around her kitchen table, eating, laughing to tears, telling stories. And she remained good-natured and good-humored, always willing to participate. Here’s one of my favorite exchanges—

Aunt Mary: Come on, Ma, we’re going to the movies.
Nana: Okay, I don’t know who you are, but I’m coming!

The reasons why her family loved her, the reasons why we are connected, disappeared for her, but they didn’t for us. We continued to love her, and she accepted it. She understood our hugs and kisses and smiles and returned them with great enthusiasm. I know she felt included and loved to the moment she died. I know this is my Aunt Mary’s proudest achievement in life.

So I have a background in Neuroscience and a grandmother who had Alzheimer’s disease. I’m on the road to here but not quite here yet. There were a couple of additional avenues I needed to travel first.

As I visited with my grandmother, the neuroscientist in me became fascinated with her progressive dissociation from her concept of self. I wondered what it must feel like, when those parts of the brain that inform awareness and identity become increasingly inaccessible, and I wished I’d thought to ask her more when she had the communication skills to describe it to me. A lover of learning and knowledge, she would’ve readily considered my questions. What is having Alzheimer’s disease like from the point of view of the person with Alzheimer’s? This question was the seed of the novel I would write.

I needed to meet people with Alzheimer’s in the early stages, people who could still describe what it’s like to have dementia. I found them at www.dasninternational.org, an online community of intelligent, articulate, and passionate people in their forties, fifties, and sixties with dementia who support each other and advocate for better care and a cure. They bravely shared their most vulnerable experiences, helping me to create a fictional story about a young woman with Alzheimer’s that is in every way possible faithful and respectful to what having Alzheimer’s is actually like. To these amazing friends of mine, I owe my deepest gratitude and admiration.

When I began the book, I thought I was writing a story as a neuroscientist in honor of my grandmother and family. And I thought that when I finished, I’d quickly move on to other endeavors. But in the course of writing the book, my eyes were opened to more than I’d expected. I see what people with Alzheimer’s and their loved ones struggle through, emotionally, physically, and financially. I see how difficult getting a proper diagnosis can be. I see how ignored and outcast people with Alzheimer’s become. I see how close we could be to a treatment that can stop this disease in its tracks. Seeing what I see, I knew I’d be sticking around.

I’m a neuroscientist, granddaughter, friend, and author. And I’m here. How did you get here?

Lisa Genova, author of STILL ALICE, www.StillAlice.com