Living with Early-Onset Dementia

Kate Swaffer, author of: “What the Hell Happened to My Brain?” was diagnosed with early-onset dementia at the age of 49. She speaks with Alzheimers.net about her diagnosis today and shares an excerpt from her book with us.Living with Early-Onset Dementia

Learn more about the author and her experience living with dementia.

Kate Swaffer: Living with Early-Onset Dementia

Kate Swaffer was 49 years old when she was diagnosed with a rare form of early-onset dementia. In “What the Hell Happened to My Brain? she explores issues relating to that experience, including:

  • Giving up employment and driving
  • Breaking the news to family
  • Having a reduced social circle
  • Confronting the stigma surrounding dementia
  • Inadequacies in care and support.

Swaffer also shares her experiences in dementia activism and advocacy, highlighting the important role of social media in combatting isolation post-diagnosis.

Kate’s empowering words challenge preconceptions of dementia, highlight the issues that impact individuals living with a dementia diagnosis, and act as a source of comfort for them and their loved ones.

Behind Early-Onset Dementia

The reason for writing this book was that for most of the time since being diagnosed with dementia, it has been people without dementia telling me how I feel, what is best for me, and how I should respond to having dementia.

It is also people without dementia who have decided on the language of dementia; what they believe is and isn’t respectful and empowering. They have been wrong as, for example, it is no longer acceptable or respectful to publicly label people with dementia as sufferers or victims. Yes, we suffer some of the time, from things including dementia, but many of us are not living as ‘sufferers’ and find this and other terms like it offensive.

The time is now that the global community of people living with dementia has spoken up, in the same way the disability community did over 40 years ago.

This book is about giving my voice and the voice of others with dementia a valid platform, beyond my blog that has been written almost daily since my diagnosis. I felt it was imperative ‘our’ story was told, and although there are a few people like Richard Taylor living with dementia who have written before me, the personal voice of dementia is predominantly that of the family supporter/carer. It is not our authentic voice. After all, whose story is it? If is a carers story, then it should be about their experience of caring for someone with dementia not ours; no one has the real authority to speak on our behalf. The only people ‘living with dementia’ are those of us diagnosed with it, and as such, it is imperative we tell our stories, no doubt part of the reason Richard Taylor called his book “Alzheimer’s from the Inside Out.”

I can live well with dementia, but so far, very few people are teaching us how and I am hoping this book will teach more people not only that it is possible, but how, and that it will give hope instead of the fear and hopelessness most people experience after a diagnosis of dementia.

We live until we die, and for the most part, I try to live as well as possible, to enjoy the days I am alive and seek to view my world as one with a glass half full.

I am living with dementia, in the best way possible, and I am definitely not ‘suffering from dementia.’ I feel blessed that it has not stolen as much of my soul as I had first anticipated and written about in the following excerpt from my book, and that my experience of living with it is more positive than we were told it would be. Dementia has brought me many gifts, not least, that of deep introspection and the ability to live life as if every day is my last, just in case it is.

Excerpt from: “What… Happened to My Brain?”

Soon after diagnosed, the first formal writing I did about the experience was done for a subject at the University of South Australia. It was meant to be a travel piece, as if I was a travel writer, about visiting a new place. The only ‘place’ I had inside my head was dementia, and with permission I wrote about that instead. It was subsequently published in the LINK Disability Magazine:

“Dementia is an uninvited visitor to my world, an unwelcome early 50th birthday present, one where the old me seems to be rapidly moving away from a new me. I am being dragged along on this journey with no way to get back home as it races along like an express train without brakes. I read then I forget; I read, I take notes, and then I forget; I read, I highlight and take notes, and I still forget. That photographic memory I once had is gone, dead and fully buried. My high functioning mind has slipped away, sometimes showing itself like a ghost, teasing me into believing it will be okay, but just outside of my reach. Words now have no meaning and whole patches of my memory are disappearing.

The mountain I am climbing is finite, but even if I get to the top there will be no grand planting of my flag nor will I have remembered the climb, and when I come down, I won’t remember having been there. Some of my friends inform me I am not aphasic, that I am not remembering any less well than they do, that their world is the same as mine. They say I am getting old and this is what it is like, so get used to it. I ask myself, “What would they know?”

They are wrong. It is different. I regularly do not understand or remember what I read, or what people say to me… Reading has become a pointless exercise, due to the fact that as I read one paragraph, I have already forgotten the last. So taking notes of every single thing I read that I will need to recall has not become an option. Even writing a simple email or card to a friend has become a major task, because if I don’t go slowly, or take the time to edit it over and over, the words come out wrong. Writing is also difficult, as I can forget what I’ve written, and what the words mean.

It is insidiously depriving me of a normal existence, and is very humiliating and awkward to live with, stealing my soul, and threatening my very existence. It makes me nervous to go out. Every day now feels like a brand new one, except that my body feels very old and tired. I realise that writing about my dementia is not an option and that no matter how long it takes to make it legible and worthwhile to read, it is important to the management of this disease. It is possibly the only form of therapy that will ease my stress and tears…

Most days are now an effort not to just sit in a corner and cry, not to just give up or to give in to it. It requires a great amount of emotional effort to live a ‘normal’ existence and is the most demeaning and frightening experience I have had, with a feeling of wretchedness I have not felt before.

This new place is full of hidden and impending madness, full of people already whispering behind closed doors away from my ears, trying to plan for my demise and how I and they will cope. They provide words of comfort and gentle pats on my back, meaning well but never realising it usually makes me feel as like a leper, as if I am to be pitied. They are the ones who will eventually have the challenges of coping, as I will be lost in a world of inhibition and supposed joyfulness, locked out of the reality of the world and its occupants. And so, I keep asking myself am I to be the lucky one in this strange place called dementia. Perhaps so!”

About the AuthorKate Swaffer

Kate Swaffer is the author of: “What the Hell Happened to My Brain?” written about the impact of being diagnosed with early-onset dementia.

Have you read Kate Swaffer’s book about living with dementia? How did it impact you? Share your thoughts with us in the comments below.

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Mikey Hoag: Calling on a Community to Raise Funds

Hoags_Adriana Klas Photography-8891Nothing made Michaela (Mikey) Hoag of Atherton, California, feel more powerless than when her father, living more than 2,000 miles away on the East Coast, was diagnosed with Alzheimer’s disease. Unable to help with her dad’s daily care and unwilling to sit idle, she turned to her husband, Jay, and asked “What can we do?”

Mikey reached out to the Alzheimer’s Association with questions about the disease — and walked away with information, resources and much more. In the Association, she found a partner to help her develop and pursue her philanthropic vision to help solve the problem of Alzheimer’s.

In 2004, Mikey and Jay pledged their first $1 million gift to the Association’s research program, placing them as lifetime members of the Zenith Society, the Association’s highest and most involved level of philanthropy. But despite her increased support, which included attendance at Association fundraising events across the country, Mikey remained reluctant to speak out about her connection to the disease. It was after her father passed away in 2007 that she realized the power her story could have in bringing people together and rallying them around the Alzheimer’s cause.

“I didn’t know if people would respond if I spoke out,” Mikey said. “But I had two choices: I could ignore the problem or I could do something about it. And when my mother started to show the signs of the disease, I knew I had to kick it in gear. This couldn’t wait.”

Mikey decided that she could use her experience with Alzheimer’s to start an event in Silicon Valley, a hub for innovation and problem solving. Aided by a steering committee of dedicated women affected by the disease, her idea — an inspirational gala calling on community leaders, powerful business executives and celebrities to raise awareness and funds to fight the disease — began to take shape.

On May 5, 2012, the first Part the Cloud gala was held in Menlo Park, California. The event featured a live performance by American icon Tony Bennett and appearances by Bill Walton, Joan Baez, Mickey Hart, Terry Moran, Virginia Madsen and other well-known celebrities. It was an evening of music, dancing and storytelling that raised nearly $2 million to advance the research efforts of the Alzheimer’s Association. From there, the event continued to grow: In 2014, Part the Cloud raised over $4 million, making it the largest one-day fundraiser in the Association’s history.

The biennial gala alternates yearly with a luncheon of the same name, and together the two events have raised over $6 million to date, allowing the Association to support the work of some of the nation’s most prestigious scientists and universities. Awards from Part the Cloud focus on accelerating the transition of critical findings from the laboratory through trials and into possible therapies — filling the gap in Alzheimer’s drug development by providing essential support for early-phase clinical studies.

“Research is the only way to end this disease,” Mikey said. “I know that I can raise money, and I’m confident in the Association’s ability to invest the funds in the most meaningful ways.”

To accelerate research at an even faster pace, Mikey is encouraging corporations to match Part the Cloud’s grant funding. In 2014, Part the Cloud received 35 grant applications from promising researchers in North America but was only able to fund five. Mikey is confident that with the support of corporations, the number of projects they could fund would significantly increase.

Ref lecting on the past few years, Mikey is optimistic about the power of community and what can be achieved, especially with a strong network. She recently joined My Brain™, a movement that calls on 1 million women to use their amazing brains to wipe out Alzheimer’s disease.

“This wonderful philanthropic family has developed across the country,” Mikey said. “There are times when you’re exhausted and feel like you’re not making any headway, and then you meet strong women like Dagmar Dolby and Maria Shriver and you know others are fighting just as hard for the same cause. It keeps me going.”

Learn more about Part the Cloud at alz.org/galas.

Signs of Alzheimer’s Seen 18 Years Before Symptoms

The results of a study from Rush University Medical Center in Chicago show that signs of cognitive impairment can be detected as early as 18 years before the disease is diagnosed.Signs of Alzheimer's Seen 18 Years Before Symptoms

Learn more about this study and what it means for early detection of dementia.

Signs of Alzheimer’s Seen Years Before Diagnosis

A research team led by associate professor of internal medicine at Rush University, Kumar Rajan, has found that early signs of cognitive impairment leading to Alzheimer’s may present themselves 18 years before symptoms occur.

Rajan and his colleagues observed over 2,000 seniors who did not have dementia over the span of 18 years. Every three years, the participants took a mental skills test and then analyzed the results over time. They found that those seniors who eventually developed Alzheimer’s has lower test scores throughout the 18 year period. In addition, their scores actually declined with each test.

Researchers concluded that for each unit their score dropped, the risk of developing Alzheimer’s increased by 85%.

Testing to Predict Alzheimer’s Risk

Researchers caution that their study only demonstrates a link between testing scores and a group-level risk and that as of now, the tests can not be used to predict an individual’s risk of developing Alzheimer’s. More research will be needed to determine how testing can be used to determine an individual’s risk.

For now, researchers believe their findings suggest that a cognitive test should be part of a regular assessment for people beginning in middle age. Catching Alzheimer’s early will give doctors more time to intervene and slow the progression of the disease.

Next, Rajan plans to study the effects of brain-stimulating activities on Alzheimer’s once it is diagnosed.

Do you think regular cognitive testing should be a part of standard medical care? Why or why not? Share your thoughts with us in the comments below.

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Caregiver 101

Caregiving 101
By Michael Plontz

A family member has just been diagnosed with an illness that will eventually require round-the-clock care. Of course you want to be the one giving that care. This decision is usually made without hesitation; of course we want to be our loved one’s caregiver. Who else could take better care of them? However, when the reality of your decision sinks in, your head will be swimming with uncertainty, anxiety, and maybe even fear. Certainly you will have many questions. Welcome to Caregiving 101, a primer for first-time caregivers.

First of all, arm yourself with knowledge. An old maxim states that “Knowledge is power,” and it’s true. Knowledge will empower you to take the best care of your loved one and yourself. Learn all that you can about your loved one’s condition, illness or disease. There are local branches of national organizations like the Alzheimer’s Association and the Cancer Society all over the country. Use them as a tool to find out all about your loved one’s present condition and what the future may hold for both of you.

Another reason to learn is to take better care of your loved one. You may educate yourself through health care manuals, books and videos. The Internet is also a good source of information, but navigate carefully through that material because not all of it is valid. Also, ask lots of questions of your health care professionals. They are the best people to show you proper techniques like transferring, lifting and bathing. When you learn all that you can, you will be more confident in your caregiving abilities.

Caregiving can be an isolating experience, so it’s helpful to talk to others who are, or have been, in your shoes. You will feel that you are a part of a growing community of caregivers. You may also learn about options and community resources that you were not aware of from other caregivers. These people can also help with difficult decisions concerning your loved one. Determining your responsibilities will probably be one of the first things you struggle with, so talk to others who’ve been there before.

You must remember to take regular breaks from your caregiving responsibilities. You can’t be good to someone else if you’re not good to yourself. Use your relatives. They can help in several ways—financially, socially, and as respite support. If relatives are unavailable or do not exist, try community services like a volunteer group at your local church. Try and follow these guidelines for caregiving breaks: take half-an-hour a day to practice yoga, meditation, needlepoint, reading, etc.; spend a couple of hours a week away from the house at the mall, coffeehouse, library, etc.; monthly you should have an evening out with friends, go to a play or concert, etc.; on a yearly basis you should go on a well-planned (and well-deserved) vacation. These guidelines will help in avoiding “caregiver burnout.”

Your community most likely has organizations about which you never gave a second thought until now. These may include, but are not limited to, Meals on Wheels, day care centers, and home care agencies. If applicable, contact your local Area Agency on Aging for a list of services and organizations. Your local medical supply store may have gadgets and devices to enhance your loved one’s abilities, at the same time making your life a little easier. You might also inquire about local, state or federal programs that might provide financial aid for you and your loved one. As needs increase, so do costs. Understanding which programs can help and what you can afford, will allow you to plan for the future.

One way to deal with the emotional roller coaster you may experience is to get your feelings down on paper. Some journal entries might address the following subjects: How do you feel now? What are your fears and/or concerns? What outcomes would you like? What losses have you noticed so far? What changes in your relationship with your loved one have cause you to feel sad? What changes have given you comfort? Journaling is a healthy way to put your feelings “out there” and to possibly alleviate some of the anger, frustration and helplessness you may be feeling.

Caregiving need not be a lonely and emotionally debilitating experience. According to the latest statistics on caregiving for the National Family Caregivers Association, nearly half of the U. S. population has a chronic condition. From that number 41 million are limited in their daily activities while 12 million are unable to live independently or even leave the house. One can deduce from these numbers that there are millions of family caregivers out there. So keep in mind that you are not alone, and best of luck to you and your loved one.

Walk to End Alzheimer’s

What’s With All of the “Walk” Talk?Walk to End Alzheimer's

Ahh, summer, the season that lays claim to some of our nation’s favorite collective activities.  The heady scents of Hawaiian Tropic Suntan Lotion and chicken smothered in barbecue sauce cooking on the grill are in the air.  The rip and sputter of neighborhood lawnmowers starting accompany morning bird songs as the heat of the day signals a soundtrack change to the latest summer anthem heard via mobile concerto courtesy of the young people driving past the house with their car windows down and music turned up.  The time of year where the undulating click and hiss of a sprinkler head watering the lawn and cooling our warm skin with its’ intermittent spray, and an individually wrapped Popsicle of our very own can make just about any day a little bit better.  Nights under cool cotton sheets with a warm breeze blowing cricket chirps and frog conversations so close by through an open window that their sounds seem almost decipherable.  We tend to spend more hours outdoors in the summer than any other time of year.  We take more vacations and travel more frequently this time of year.  We seem to have fewer commitments and more possibilities.

 

Tennis ShoesSummer provides a season perfectly suited for making memories.  Graduations, weddings, family trips, and first kisses.   For most of us, our favorite sun-drenched summer shenanigans, mundane moments and meaningful milestones are still accessible memories we can choose to call up whenever we want to revisit them.  Unfortunately for those coping with Alzheimer’s, those poignant pieces of personal history can be hard to retrieve.

That’s why, for Alzheimer’s advocates across the country, summer is also the start of the “Walk Season.”

The Alzheimer’s Association Walk to End Alzheimer’s® or “The Walk” as it’s affectionately known, is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research.  Held annually year-round in more than 600 communities over all 50 states, the walk unites more than 450,000 participants in a walk designed in equal parts to raise as much awareness as increase needed dollars to support the fight against Alzheimer’s.

If you’ve been following the news, you’ll note that just last week the Senate Appropriations Committee approved a historic 60% increase in research funding as an enhancement to the Alzheimer’s Accountability Act.  If passed into law, this would be the largest increase in Alzheimer’s funding to date, according to the Alzheimer’s Association.

There is still a tremendous need for more funding to provide and enhance programs focusing on education and support, advance critical research studies into methods of treatment, prevention and ultimately, and most importantly, a cure.

 

2012 Walk To End Alzheimer'sI can almost feel your eye roll as you read this… I know what you’re thinking, and I can relate.   It’s easy to feel the effects of “fund-raising fatigue” when it seems like everywhere you turn a worthy cause or organization is asking for financial support.

You might be thinking, that if The Walk is the largest fundraising event for Alzheimer’s it sounds like they’ve already pretty much got it covered without us having to lace up our sneakers and cajole family and friends into donning matching purple shirts, for a stroll around a nearby landmark, right?

Well, not so fast.   As it turns out, Alzheimer’s could use a lot more help in the awareness and financial resources area.   For starters, the proposed increase in government spending hasn’t passed yet and meanwhile deaths from Alzheimer’s disease rose a staggering 68% in the last decade to become the #6 cause of all deaths in the United States and the only cause of death in the in the list of top 10 without any cure or treatment and every 68 seconds someone new gets it.

Also, not to be bitter, but according to a recent ranking of the Top 100 Non-Profit Fundraising Organizations, the Alzheimer’s Association (the only Alzheimer’s-related non-profit that even made the list) comes in at a disheartening 35th behind other notable causes such as the preservation of public radio, art museums, and libraries, and after maintaining our mountains, and behind ensuring the future of whales, panda bears and the boy scouts.   Every one of these top 100 non-profits are all wonderful organizations doing great work. In fact, we contribute what we can to several of the top 100 non-profits here in our house.

In the weeks and months ahead as Walk Season takes hold there will likely be a steady parade of progressive pledge requests and tee-shirt sales circulars making their way into your social media feeds, inboxes and water cooler conversations. Before you feign a  particularly destructive computer virus or cite a selectively inoperative cell phone rendering you unable to respond to such appeals, please take a moment to think about where the funds everyone is trying so hard to raise actually go.

 

Alzheimer's Association InfographicThe Alzheimer’s Association is the world’s largest non-profit funder of Alzheimer’s research, awarding over $335 million to more than 2,250 scientists since 1982, and through their partnerships and funded projects, has been part of EVERY major research advancement in the fight against Alzheimer’s over the past 30 years.  Their 24-hour helpline (1-800-272-3900) offers free information and advice by professionally trained staff to over 250,000 callers every year, they run over 4,500 support groups nationwide (an average of 90 in each state), curate the nation’s largest library and resource center devoted to Alzheimer’s disease and related dementias, deliver 20,000 education programs annually, and their comprehensive and interactive website connects people across the globe impacted by Alzheimer’s.

The Alzheimer’s Association is also the world’s leading voluntary health organization in Alzheimer’s care, support and research.

But they are just that – largely voluntary – and over one third of their annual revenue comes from the walks.  It might not seem like such a big organization needs a little help from people like us, but it’s the people like us that make it possible for them to offer a lot of the programs we count on them to deliver.

Me in my walking gear!

Sometimes starting or donating to a walk team or buying a tee-shirt or can make the difference between whether a local chapter can offer a support group on the weekends, provide an educational program to a group of future caregivers, get needed information in the hands of those newly diagnosed, or if the national office can allocate critical dollars to a lab of international experts studying the effectiveness of current medications.

If we’re going to be outside slathered in our coconut scented suntan lotion humming this year’s anthem of summer looking for a Popsicle between barbecues anyhow, then we might as well do some good.  It doesn’t cost anything to register, and who knows, maybe I’ll run into you at a Walk in your area. You’ll know it’s me because I’ll be the one in the purple tee-shirt! :)

Nedra Brown – Why I Walk

Jack and NedraI walk… because like so many other caregivers, I have been through the agony of watching a loved one face Alzheimer’s and lose the battle. We, who have been through this, have seen the changes that take place and feel disheartened because there is nothing we can do except take care of their needs. We feel there is nothing else we can do to help.

But there is something else we can do. We can support the Alzheimer’s Association in many ways, and Walk to End Alzheimer’s is one of them. I was so busy taking care of Jack while he was going through this disease, that I didn’t have time to consider what I could do to help. Now that he is gone from me, I do have the time – and I intend to be active in the Alzheimer’s Association. This is a new phase of my life, and I have a lot to learn about the Association and where I can be of help.

A little about Jack. He was a man to be proud of. He retired from Mid Valley Title and Escrow in Chico, where he was the President for approximately forty years. His charge included three offices: one in Chico, one in Paradise and the third in Oroville. He was also on the Board of Directors at other Title Companies in Northern California. He was well thought of in his business and personal life. He piloted small planes and was a former president of the Hillsliders Snowmobile Club in Butte Meadows, California. He was a very active man.

As we became concerned about his mental health, we took many trips to see doctors. We, hoped to determine that this was something we could heal. I worked hard to find something to heal him and, of course, it was to no avail. This was difficult to face – that this is not a disease that is curable, at least not at this point. The Alzheimer’s Association is working hard towards a cure, and this is why I walk. To do anything I can to help end Alzheimer’s.

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I Am More than My Diagnosis

Tim, diagnosed with Frontotemporal dementia in 2012, living with HIV

Working in information technology and then for many years as a part of a management team, my career was very important to me. At the end of 2009, however, I realized that I was having trouble focusing on my job, and one day after a lunchtime walk, I felt like I had lost sight in one of my eyes. Thinking it was due to stress, I didn’t tell my partner Ron. I explained it away.

In early 2010, I took a work trip to Denver. During that week I had issues typing and communicating. When I met with my boss to discuss the trip, I had trouble speaking. That’s when I decided to see a doctor. “After talking to you, I think you need to go to ER right now,” he said.  I found out that I had had a stroke, and doctors suspected that several mini- strokes had also occurred, which accounted for my vision loss.timblog

Despite having some answers, I didn’t have them all. After returning to work a couple of months later, I was still struggling to do my job, which resulted in my being demoted. In January 2012, I was laid off. Due to all of the anxiety I was experiencing, I started seeing a therapist, who suggested that I make lists of coping strategies, but I never made the connection in my head to actually complete the tasks.

While in therapy, I was also undergoing testing and not sharing the results with Ron. I would come home and say “everything is fine” very nonchalantly. Ron knew everything wasn’t. “Either you are not communicating properly or you are just not telling me something,” he said. From then on Ron accompanied me to my appointments. We learned that the results of the testing indicated that there was a problem, but no conclusive diagnosis. Ron crusaded to find out what was really going on.  Eventually, in 2012, after many tests and much anxiety, I was diagnosed with Frontotemporal dementia (FTD), which is caused by progressive cell degeneration that affects the frontal and temporal lobes of the brain.  

Ron is my everything. He is my advocate, my only support, and my protector. If it wasn’t for him, I probably would not have received a diagnosis. I don’t even realize how many times a day he helps me make decisions. He’s good at subtly guiding me, as I can get very easily lost in a task. He is always looking out for my best interest. Because of FTD, I don’t have a perception of what repercussions exist due to my actions. I can’t even imagine what my life would be if I did not have him here.

Having been HIV positive for 25+ years, I treat the diagnosis of dementia like HIV; it doesn’t define who I am or what I can do. I don’t let the dual diagnosis control my life. I present myself first – work experience, life experience – and eventually my story unfolds. When I introduced myself to Congressman Cory Booker, I said, “Something you might not know about me is that I was diagnosed with dementia in 2012.” It was amazing how his constitution changed. “I wouldn’t have known,” he replied. It changed his whole perspective.

I tell people who I speak with on Peer-to-Peer Outreach Program calls that they have to look at their diagnosis as a new adventure. (Peer-to-Peer Outreach is a program of the Alzheimer’s Association that connects newly-diagnosed individuals with others living with Alzheimer’s and other dementias via telephone in order to share their experiences.) It’s a new challenge in your life. You will find different ways to accomplish tasks and you will find talents that you never had before. I never used to be able to speak in front of people. Because of my diagnosis, I can now give a speech. I still have challenges, I still have anxiety, but I have been able to do things I couldn’t do before as well.

As a care partner, Ron has a thankless job. I don’t always acknowledge what he does for me. Some doctors have suggested that the word dementia not be used in front of me and I appreciate that Ron is so honest with me about the diagnosis. Individuals living with dementia deserve to have advocates. You need someone who will go to battle for you. Ron does that for me.

I was losing direction and I needed to find a new outlet, so Ron encouraged me to get involved with the Alzheimer’s Association. Being an Early-Stage Advisory Group (ESAG) member has allowed me to let people know that their life is not over – that life is what you make of it. If I had a tagline like the women do on the Real Housewives reality shows, mine would be: “Get to know me first. I am more than my diagnosis.”

Ron, Tim’s care partner

I knew something was wrong long before Tim received a diagnosis. As his advocate, I helped coordinate his medical team and began making plans for the future. We went to an elder care lawyer (who was very helpful) and sold our home that we spent 10 years renovating .A lot of people wait too long to plan. The sooner you do that the better.

Dementia happened to Tim much earlier than it does for most. He was hoping to work up to 15 more years, build funds for retirement and travel. We moved from the suburbs to a 55+ community, and we live a very different life here. Tim and I have attended support groups through the Alzheimer’s Association, but I have also found support in our community by connecting with other caregivers. While other community members are older and their experiences more varied, their support is still valuable. Almost all of the people that are involved in support groups and services in the community are much older than us and it’s hard to relate to one another. Prepare yourself, because as a care partner, you have to realize it will only become even more intense.

You have to seek out advice. You have to be realistic. It won’t get any better. You have to take advantage of every moment together and celebrate what you have. Your relationship will change greatly. There are times when it’s difficult, and it’s usually little things that push you over the edge. You get by, but it’s very difficult. It is very hard to see your loved one diminish in front of you. I love Tim, but he isn’t who he used to be. As a care partner, you sometimes feel like you have the weight of the world on your shoulders.

It is a heavy journey and it is a process, but you do what you can do. It’s not all gloom and doom, but it has been difficult reflecting on the past three years. Neither of us have a career anymore. We had to sell our home and settle into a new place. Amongst all that, we were working on getting Tim’s diagnosis. I lost both of my parents and Tim’s brother and father passed away – we’ve had so much happen. But we don’t give up. You have to make the best of your situation. I want other care partners and caregivers to know that they shouldn’t give up their whole identity. You have to do things for yourself. Our situation is what it is. You have to try and take in every moment you have and hold on to what you can.

As a member of the Alzheimer’s Association 2014 National Early-Stage Advisory Group (ESAG), Tim Kaufman raises awareness of the financial impact of the disease and the value of an accurate and early diagnosis. He also addresses the needs of lesbian, gay, bisexual and transgender (LGBT) individuals living with dementia. Tim and his partner Ron live in Southampton, New Jersey.

Diet that mimics fasting may promote longevity and improve healthspan

A new study published in Cell Metabolism suggests following a calorie-restricted diet that mimics fasting for just 5 days a month for 3 months may promote longevity and reduce a number of risk factors for cancer, diabetes and cardiovascular disease.
A woman eating healthy food
Researchers found participants who followed a fasting-mimicking diet experienced a reduction in risk factors linked to aging, cardiovascular disease, diabetes and cancer.

Study co-author Valter D. Longo, of the FIRC Institute of Molecular Oncology in Italy and the University of Southern California, and colleagues say the research demonstrates the first anti-aging, healthspan-promoting intervention that doctors could feasibly recommend for patients.

Previous research from Longo in June last year suggested prolonged fasting – defined as consuming only water for 2-4 days – can “reboot” the human immune system. That is, fasting can help clear out damaged cells and regenerate new ones.

Another study published later that month also found periodic fasting may protect against diabetes among individuals at high risk for the condition.

However, Longo and colleagues note that humans find it psychologically challenging to engage in such extreme dieting, and it can also have adverse health effects – particularly for older individuals.

“These concerns point to the need for dietary interventions that induce prolonged fasting-like effects while minimizing the risk of adverse effects and the burden of complete food restriction,” they note.

Fasting diet promoted cell regeneration, extending lifespan in mice

To address this need, the researchers developed a fasting-mimicking diet (FMD) – a low-protein, low-fat diet high in healthy fats. By activating markers associated with prolonged fasting, such as low glucose levels and high levels of ketone bodies, the diet was able to simulate the effects of fasting.

Firstly, the team tested the diet in middle-aged mice, feeding them the diet for 4 days, twice a month. Mice fed the FMD intervention were compared with mice fed a control diet.

The team found mice fed the FMD intervention had much higher numbers of stem cells, and they experienced regeneration of an array of other cell types, including bone, muscle, liver, brain and immune cells, compared with mice fed the control diet.

In addition, the FMD intervention appeared to extend the lifespan of mice and promote better overall health. They experienced better learning and memory, lower incidence of cancer and inflammatory diseases and fat loss without a reduction in lean body mass, compared with control mice.

Reduction in risk factors for aging, CVD, diabetes and cancer in humans

Next, the team tested a similar FMD intervention in a group of 19 generally healthy people aged 18-70. These participants were required to follow the diet for 5 days a month for 3 months. The diet provided them with between 34-54% of their normal caloric intake, as well as 11-14% proteins, 42-43% carbohydrates and 44-46% fat.

The 19 participants following the FMD intervention were compared with a group of 18 generally healthy aged-matched individuals who continued to follow their normal diet.

Compared with the participants who consumed their standard diet, those who followed the FMD intervention experienced a reduction in risk factors linked to aging, cardiovascular disease (CVD), diabetes and cancer, including lowered blood glucose, reduced markers of inflammation and weight loss.

The team notes that only 5% of FMD participants were disqualified from the study for failing to comply with the dietary regime.

Longo and colleagues say their findings indicate that following an FMD intervention periodically may promote longevity in humans and protect against risk factors for certain diseases. They add:

“Although the clinical results will require confirmation by a larger randomized trial, the effects of FMD cycles on biomarkers/risk factors for aging, cancer, diabetes, and CVD, coupled with the very high compliance to the diet and its safety, indicate that this periodic dietary strategy has high potential to be effective in promoting human healthspan.”

The team says they are now putting the FMD intervention through a rigorous testing process in order to gain approval from the US Food and Drug Administration (FDA) for clinical use. This involves testing the efficacy of the diet in 60-70 participants, before moving to a clinical trial with 500-1,000 participants.

“This is arguably the first non-chronic preclinically and clinically tested anti-aging and healthspan-promoting intervention shown to work and to be very feasible as a doctor or dietitian-supervised intervention,” says Longo.

The researchers stress that because the effects of the FMD intervention are potent, individuals should only follow such a diet under medical supervision.

Written by Honor Whiteman

Stories My Grandfather Told Me

I am sitting at a dinner party in Deauville, France, listening to my grandfather recount stories I’ve heard him tell a thousand times before; times spent with Peter O’Toole in the desert, his love affair with Barbra Streisand and with other leading ladies, past exploits at card tables and racetracks.omar1

But this night is different. The stories are off; rich details normally embedded like fine jewels are missing. The characters are colorless and the anecdotes lack grounding in space and time – they just seem to float out of place and order. Attempts at humor have been replaced by an obvious air of anxiety and frustration brought on by his trying to remember.

He’s just tired, I think to myself. He’s been traveling too much. Pay it no mind.

But then he starts the stories over again, seemingly unaware that he’s just finished recounting them.

Something is wrong.

This was my first indication that my grandfather had Alzheimer’s disease, and in the subsequent years, many clues would follow.

omar2It’s the quintessential irony — creating a life filled with cherished memories and relationships only to lose them.

A World Champion bridge player, an Academy Award nominated actor, a man proficient in seven languages with a higher IQ than anyone I’ll likely ever meet…Alzheimer’s does not discriminate in its victims.

It has been a slow and steady decline made all the more apparent by a lack of forward progress towards finding a cure.

So we must unite.

Throughout the month of June, join me in taking the pledge to “Go Purple” for Alzheimer’s awareness and let’s find purplepledgeomara cure together.

Alzheimer’s is a thief — stealing brilliant minds. This disease must be stopped.

 

About the Author: Omar Sharif, Jr. is an Egyptian actor and spokesperson. An advocate for equal human rights, he is the grandson of legendary Hollywood actor Omar Sharif.

Alzheimer’s risk may be predicted by blood protein

Researchers have discovered a blood protein that could indicate the development of mild cognitive impairment – a condition associated with an increased risk of Alzheimer’s disease and other dementias – long before symptoms present themselves.
Gloved hand holding a test tube filled with blood.
Previous studies have suggested that blood could be a useful source of biomarkers for Alzheimer’s disease.

The study, published in Translational Psychiatry, involved data from over 100 sets of twins – including 55 pairs of identical twins – allowing the researchers to demonstrate that any associations discovered between the blood protein and cognitive decline were independent of age and genetics.

Alzheimer’s disease is an age-associated neurodegenerative disorder and the sixth leading cause of death in the US. According to the Alzheimer’s Association, an estimated 5.3 million Americans of all ages have the condition. At present, no treatments are available to prevent the development of Alzheimer’s disease.

“Although we are still searching for an effective treatment for Alzheimer’s disease, what we do know is that prevention of the disease is likely to be more effective than trying to reverse it,” says lead author Dr. Steven Kiddle, a research fellow at King’s College London (KCL) in the UK.

For a prevention trial to be effective, individuals at risk of the disease are required. Individuals at risk from Alzheimer’s disease can be difficult to identify, however. Although magnetic resonance imaging (MRI) and positron emission tomography (PET) brain scans can show visible signs of symptoms before symptoms are presented, these are expensive and require specialized facilities.

Many researchers are searching for surrogate markers that are relatively inexpensive and noninvasive yet provide enough information to benefit prevention trials, the authors write. For the new study, the team examined more than 1,000 proteins in the blood of 212 subjects (106 pairs of twins) using a protein biomarker discovery tool that measured a wide range of different proteins.

Each subject’s cognitive ability was assessed using a computerized test known to be sensitive for detecting early Alzheimer’s disease-related cognitive changes and the results of these were compared with the protein levels measured each individual’s blood.

Further studies required to confirm protein’s status as a biomarker

The researchers discovered that levels of one particular protein – MAPKAPK5 – was lower in the blood of individuals whose cognitive ability declined significantly over 10 years. MAPKAPK5 levels appeared to be associated with cognitive change in both the context of individuals and within pairs of twins.

It is the first time that MAPKAPK5 has been implicated in the development of Alzheimer’s disease, having previously been studied in the context of cancer and rheumatoid arthritis.

“The next step will be to replicate our finding in an independent study, and to confirm whether or not it is specific for Alzheimer’s disease,” says Dr. Kiddle, “as this could lead to the development of a reliable blood test, which would help clinicians identify suitable people for prevention trials.”

If the team can confirm the protein’s status as a biomarker for modifiable cognitive aging, it would be of huge benefit to other researchers aiming to recruit at-risk asymptomatic individuals into prevention trials.

“We’re very optimistic that our research has the potential to benefit the lives of those who don’t currently have symptoms of Alzheimer’s, but are at risk of developing the disease,” concludes co-author Dr. Claire Steves, geriatrician and senior lecturer in Twin Research at KCL.

Funding for the UK-based study was provided by the Medical Research Council (MRC), the National Institute of Health Research Biomedical Research Centre for Mental Health and the Wellcome Trust.

Recently, Medical News Today reported on a study that found a form of medication taken by patients to prevent transplanted organs from rejecting their new bodies could also protect against the development of Alzheimer’s disease.

Written by James McIntosh