Seth Rogen’s Hilarity for Charity Brings Serious Attention to Alzheimer’s

Seth Rogen is best known for his role in slapstick comedies like “Knocked Up” and “Superbad.” But there’s another side to the actor, one that is fighting for Alzheimer’s awareness and raising funding for Alzheimer’s research.Seth Rogen's Hilarity for Charity Brings Serious Attention to Alzheimer's

As Rogen watches his mother-in-law battle with the disease, he is raising funds and awareness through his organization “Hilarity for Charity.” Learn more about the organization and how it is bringing serious attention to Alzheimer’s.

Seth Rogen’s Hilarity for Charity

Hilarity for Charity (HFC) is an organization led by Seth Rogen and his wife, Lauren Miller, to fight Alzheimer’s, the disease that plagues his mother in-law. Using his celebrity status and far reaching platform, Rogen and his team strive to raise Alzheimer’s awareness among the millennial generation.

The organization sponsors an annual event called the Los Angeles Variety Show and since the event began three years ago, HFC has raised over $1.7 million for Alzheimer’s. Past performers include Paul Rudd, Bruno Mars, Tenacious D, Patton Oswalt, Samuel L. Jackson and The Backstreet Boys, to name a few. This year’s event, James Franco’s Bar Mitzvah at the Fourth Annual Variety Show, will be held on October 17, 2015 and features Miley Cyrus.

Last year, HFC expanded their reach by launching HFC U to connect with universities and encourages college organizations to host their own HFC event. The organizations compete with each other and the top fundraiser earns a coveted prize. The most recent prize, awarded to Pi Kappa Alpha and Alpha Chi Omega at the University of Vermont, was a live commentary screening of Superbad with Seth Rogen and Chris Mintz-Plasse. The nationwide program has over 230 schools participating and has raised over $200,000.

Hilarity for Charity Brings Serious Attention to Alzheimer’s

There’s no question that Hilarity for Charity is making a financial impact in the fight against Alzheimer’s. However, it is arguably their impact on social awareness that is making the biggest contribution.

The money raised from HFC goes to care, support and raise awareness and research. Hilarity for Charity awards in-home care grants throughout the Unites States and Canada to allow more people to stay at home longer. As of 2015, HFC has given over 8,000 hours of respite care to Alzheimer’s and dementia caregivers.

Another goral is to “mobilize a new generation of Alzheimer’s advocates while supporting young people who are currently affected by the disease.” To do this, HFC provides support and awareness programs for people under 40 fighting Alzheimer’s. A main component of awareness has been the the release of a feature length film, “This is Alzheimer’s” which documents the stories of three different families navigating their way through the disease.

Finally, HFC supports research efforts through the Alzheimer’s Association’s International Research Grant Program.  Of these grants, HFC has supported grants focused on early onset Alzheimer’s.

To learn more about HFC and to learn how you can become involved in their fundraising and awareness efforts visit: www.hilarityforcharity.org

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Manage Dementia’s Side Effects with These 7 Essential Oils

Essential oils have been used for generations to ease symptoms of depression, anxiety and insomnia. Some caregivers are now using these trusted oils to ease anxiety, boost memory and improve the mood of loved ones living with dementia.Manage Dementia's Side Effects with These 7 Essential Oils

Learn which oils are best suited for people living with dementia and how to use each oil safely and effectively.

Manage Dementia’s Side Effects

As the search continues for a cure for Alzheimer’s and related dementias, some research suggests that aromatherapy and the use of essential oils may treat certain symptoms of the disease.

While research on the effectiveness of essential oils is somewhat limited, some studies have shown aromatherapy can:

  • Ease symptoms of anxiety
  • Offer relief from symptoms of depression
  • Improve the quality of life for people living with chronic health conditions

Oils may be inhaled, applied to the skin, or placed in food or tea depending on the type of oil and its level of concentration.

While oils have been used for generations and many are thought to be safe, essential oils are not regulated by the Food and Drug Administration, so be sure to consult with your doctor before using to ensure oils will not have any negative interaction with medication.

In addition to the therapeutic benefits of the oils themselves, studies have also shown that sensory stimulation for people with Alzheimer’s can decrease agitation, improve sleep and improve the overall quality of life for those living with the disease.

7 Essential Oils That May Help Those Living with Dementia

Here are oils that have been shown to be effective in treating and controlling different symptoms of dementia:

1. Lavender

Lavender is thought to be calming and able to balance strong emotions. It has also been used to help with depression, anger and irritability, and can help in some cases of insomnia. Lavender can be directly inhaled, used a massage oil or sprayed on linens.

2. Peppermint

Peppermint is an energizer and can be used to stimulate the mind and calm nerves at the same time. Best used in the morning, peppermint oil can be inhaled directly, diffused in a room, used as a massage oil, sprayed in the air or even placed in a bath.

3. Rosemary

Similar to peppermint, Rosemary is an uplifting oil used to stimulate the mind and body. It may even improve cognitive performance and mood. Rosemary has also been known to ease constipation, symptoms of depression and also reinvigorate the appetite. Rosemary oil can be directly inhaled, diffused through a room or used as a spray.

4. Bergamot

Bergamot can be used to relive anxiety, agitation, mild depression and stress. This mood elevating and calming oil can also be used to relieve insomnia. To use bergamot oil, place a few drops in a bath, use as a massage oil, diffuse through a room or use a spray on clothing or linens.

5. Lemon Balm

While lemon oil may be among the more expensive oils, it is also one of the most studied and more effective oils. It has been shown to help calm and relax people who are dealing with anxiety and insomnia, improve memory and ease indigestion. Lemon oil can be dropped into a bath, inhaled directly, diffused, sprayed or applied directly to the skin as a massage oil.

6. Ylang Ylang

Ylang Ylang oil can help ease depression while also promoting good sleep. This is a great oil not only for a person living with Alzheimer’s, but also for caregivers struggling with restlessness and lack of sleep. Ylang Ylang is often combined with lemon oil and can be placed in a bath, inhaled, diffused or sprayed.

7. Ginger

Ginger oil is helpful for anyone struggling with digestion issues. Commonly used to treat a loss of appetite and constipation, ginger can help promote good eating habits. Ginger oil can be applied directly to the skin as an abdominal massage, inhaled, diffused, sprayed or placed on a compress.

Have you seen positive effects of essential oils in yourself or a loved one? Which oils worked best? Share your tips with us in the comments below.

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  • Rosemary

    I would really appreciate suggestions for activities for men in an assisted living place. Lots of things are offered for women, but absolutely nothing at all for the men. My husband is bored to death.

    Rosemary

    • pcarrieri

      Dear Rosemary:

      My experience with assisted living is that most of the residents are women so I guess that’s why so many of the activities are geared toward them. However, what type of activities would your husband like? Gardening? Putting? Maybe you could request that they try to incorporate some of these activities into their calendar. If not, is it possible for you to start some type of activity that he would be interested in, or to hire someone who can visit regularly and do some of these activities with him?

      • Imactrs

        Apologies…I meant to respond to Rosemary.

    • Imactrs

      That is unfortunate to hear. I am a recreation therapist and have worked with seniors most of my 30 year career. You should talk with the activity director about what opportunities he may not be taking advantage of. Most facilities hire well meaning staff with little understanding and few skills needed to provide meaningful activities for their residents. You might want to speak with the administration about offering recreation therapy for those who don’t fit into the cookbook activity programs offered in most long term care facilities. Good luck to you.

  • pcarrieri

    I am so glad I came across this blog as I recently started using essential oils with my 89 yo mother who is in early late stage alzheimers, I am so thrilled about the improvements I have seen and experienced in her that I want to tell everyone who has a love one with alzheimers. I started experimenting with Serenity, it is a doTerra blend oil, a few months ago and within a few days both the caregiver and myself noticed significant improvement. Now after a few months, everyone who has known my mom, but has does not see her on a regular basis is absolutely flabbergasted at the difference in her appearance, her alertness, and her overall mood and level of engagement. Before using the oil, my mom would sometimes sleep 22 out of 24 hours, now she rarely even naps. I can’t say enough about the improvement the oil has made not only in my mom’s life, but in ours as well as my mom lives with us. I’ve also found that chamomile tea at sundown wards off sundowning and what a blessing that is for all of us as well. Hope this helps. Check out the essential oils. Find someone who is knowledgeable in how to use them and read everything you can about them and I trust you too will experience the difference they can make in one’s life.

    • clra

      Did you diffuse the Serenity or how did you use it?? Very interested in trying this for my dad!

    • Pam

      thank you for sharing your experience. I was diagnosed with Alzheimer’s in 2013 & interested in trying these oils.

  • DeeAnn

    I have used DoTerra oils for almost a year now with great success for my health concerns but hadn’t thought about it for my 89 year old mom who lives with me. I am excited to use the oils mentioned for Alzheimers. My mom has never been diagnosed with it but is showing signs of the disease. Thanks for the suggestions.

  • mturchi

    Thank you so much for this discussion! My mom has dementia and I found diffusing an oil blend with basil, peppermint & rosemary at night helps with her mental clarity. As with anything, it is important to know how the oils are made so the quality is assured.

    • Connie

      Mturchi, How long did you use the oils before you could see a difference in your Mom?

  • crabjack

    See more about the benefits of aromatherapy for dementia at http://www.best-alzheimers-products.com/sensory-stimulation-for-alzheimers.html

  • Janet McGee

    Do you mean Lemon Balm (Melissa sp., a member of the mint family which spreads quickly and can take over a garden plot seemingly overnight), or lemon oil? These are two distinctly different botanical entities.

  • Karah Frances

    Frankincense is also amazing for those suffering with Alzheimer’s

  • Mike

    Peppermint and Lavender oils work great for migraines. Apply to temples

  • CLBailey

    I have been using EOs through several stages of my mom’s ALZ care. What I have seen is remarkable. Mom’s disease took her language first, so for years we created strategies for communication while her memory stayed in tact. During her agitation stage, we diffused lavender along with other blends that had lavender in them. I placed a diffuser at her bedside and was able to have the nurse create orders for caregivers to start diffusing 2 to 3 times per day: nap time, bedtime. When sickness spread through the building we diffused a blend which supported her immune system. (Not only did this benefit her, but others in the memory care area received the same support unintentionally.) The sickness didn’t travel to that living area. The use of EOs became so successful that caregivers began diffusing in their stations. When my mom was diagnosed with a UTI we combined her medication with Lemongrass. Now once or twice a week we diffuse Lemongrass to support UT health. We have successfully used a blend which has ginger, peppermint and fennel for constipation. Peppermint was supportive during a period of little responsiveness. Hand massages stimulate brain activity. EOs have been so helpful because of the option of topical use and aromatic use. Mom refuses most medications so the molecules from the EOs can support her. Mom is NOT getting better…she still has a disease which is snatching parts of her away, BUT EOs have supported her in so many different areas. I only wish that I had known about them years ago. I would have started her on Frankincense. Grateful for this article.

Dementia Activities and their Benefits

Scott Silknitter, founder of R.O.S. Therapy Systems, shares dementia activities and their benefits, as well as insight to enhancing the quality of life of people living with dementia.Dementia Activities and their Benefits

Learn more from his discussion with Alzheimers.net.

Dementia Activities and Benefits

There are many causes and types of dementia – Alzheimer’s disease, Vascular, Lewy Body, Frontal Lobe and more. They each have their own signature symptoms. One thing that can be of benefit for all types of dementia is activities. We are not just talking about bingo. Any type of leisure activity, including a simple conversation, can benefit the person with dementia and their caregiver.

Research shows that the use of person-centered and person-appropriate activities can provide positive effects for individuals with dementia, including:

  • Minimize behavioral changes
  • Decrease depression
  • Reduce caregiver stress
  • Improve sleep habits
  • Improve self esteem
  • Increase mental and social stimulation

Improve your quality of life and the quality of life for the one you care for through activities and engagement. Commit to just one activity per day, start some joy and see what a difference it can make.

Dementia Activities for the Family Caregiver

The “How To’s” of activities – leisure and daily living – along with tips on communicating and mitigating behavioral issues are explored in several volumes of the “Activities for the Family Caregiver” book series from R.O.S.

Here are a few of the titles written by several of the leading experts in the industry:

R.O.S. Therapy Systems improves quality of life through activities and education for caregivers and the ones they care for. Whether it is Alzheimer’s, Parkinson’s, Stroke, ALS, Huntington’s, TBI, Developmental Disability or any number of issues resulting in physical or cognitive impairment, R.O.S. teaches caregivers how to engage and communicate, provides products to engage, and consults or coaches as needed.

About the Author

R.O.S. Therapy Systems was founded by inventor, author and speaker Scott Silknitter of Greensboro, North Carolina, in 2010 as a project to help his mother and father in a 25-year battle with Parkinson’s disease and dementia. For more information about Scott or the R.O.S. family of companies, visit: www.ROSTherapySystems.com or contact (888) 352-9788.

What activities have you found beneficial for your loved one with dementia? Share them with us in the comments below.

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On a Personal Note…Why I Walk (Steve Barbieri)

Steve and TracyMy name is Steven A. Barbieri. I will be 55 years old in November of this year, and I have dementia. I was diagnosed about three years ago, on Oct 18, 2012. That phone call changed my life, and that of my wife Tracy and our three children.

I get asked all the time about the difference between dementia and Alzheimer’s disease, and this is how I explain it: “Let’s talk about Ice Cream. Everyone loves ice cream. Ice cream is not a flavor, it’s the word used to group all the flavors together. Alzheimer’s is like chocolate; it’s a flavor of dementia. The two most common dementia flavors are Alzheimer’s disease and vascular dementia. I have a different flavor. I have CTE, which is the form NFL football players suffer from after many head injuries. CTE stands for Chronic Traumatic Encephalopathy. You can see why they shorten it to CTE…

They say there are seven stages of dementia. I am at stage 3ish. I have short-term memory problems and problems finding words. I repeat things and have terrible sleep patterns that require me to nap each day. Like the battery on your cell phone, my personal battery stops each day at around 2:30, when I need time to lie down and recharge in a dark room.

Steve - Martial ArtsBefore I was diagnosed, I worked at Wells Fargo bank for 32 years. I was the VP & District Manager for one of the largest districts in the company, with 12 branches and about 250 employees. I was on two non-profit boards and I was very active in my community. My outside activities were martial arts (I hold the level of Master 5th degree in Tae Kwon Do), traveling with my wife and kids, going to my kids’ wrestling, football, swimming and dance events, and finding time to go to the gym.

I have a bucket list that I wish to complete before I am no longer here in mind:

  • To see my three children, ages 25, 18 & 14, graduate from college and walk to get their diploma.
  • To see my son get married
  • To walk my two daughters down the aisle at their weddings
  • To see my grandchildren someday, and show them how their Grandfather kicked his way around

    the world.

My wife has a hard time at weddings now. She is afraid that I will not be able to have the Father/Daughter dance with our two daughters when the time comes.

One night at around 2 am I was awake and looking online for more information about my disease. That’s when I discovered the Alzheimer’s Association’s 24-hour helpline.(800.272.3900) The operator directed me to alz.org, where I found plenty of information about ways to get connected.

I have since joined a weekly call with people who have early-onset dementia like me. I am now a part of the advocacy group in my local area. My wife and I joined the advocacy awareness group that visited our local government official in Sacramento, and I visited my local Congressman’s office, asking for support in funding research to find a cure.

My co-workers remember me by my many one-liners: “When is the best time to do something? NOW.”  Or “I never expect someone to do something that I’m not willing to do myself.” Dementia in any flavor really sucks… but I can’t just sit back and wait for someone else to help find a cure.

So my family and I, together with some friends, are Walking to End Alzheimer’s on Sept 12th.

Come join us.

– Steve Barbieri

Helpful information related to the post

Senate Approves Landmark Increase in Alzheimer’s Research Funding

Alzheimer’s is one of the most deadly diseases in the United States that receives limited funding to put towards research efforts. However, the Senate Appropriations Committee recently passed a 60% increase in Alzheimer’s research funding, that, if passed into law, would be the largest increase in funding for the disease ever.Senate Approves Landmark Increase in Alzheimer's Research Funding

National Plan to Address Alzheimer’s

It’s no secret that Alzheimer’s is one of the most expensive diseases in the U.S. and that research efforts remain grossly underfunded. The cost of care for Alzheimer’s patients in the U.S. is estimated to reach $226 billion in 2015, with the global cost of care estimated to be close to $605 billion, equivalent to 1% of the entire world’s gross domestic product. Additionally, Medicare and Medicaid are expected to pay $154 billion this year for dementia care.

Alzheimer’s disease remains the only leading cause of death in the U.S. without any cure or way to prevent or slow its progression. Yet, Alzheimer’s receives only $586 million for research.

Experts estimate that nearly $2 billion annually is necessary to find a prevention or treatment by 2025, the goal of the National Plan to Address Alzheimer’s.

Closing the Gap in Alzheimer’s Funding

In an effort to close the funding gap and fulfill the goals and objectives of the National Plan to Address Alzheimer’s, the Senate Appropriations Committee passed a historic 60% increase for Alzheimer’s disease research funding, adding nearly $350 million to the cause. If the increase is passed into law, it will be the largest increase in Alzheimer’s research funding ever.

Harry Johns, President and CEO of the Alzheimer’s Association is encouraged by the potential increase in funding saying:

“With this bipartisan call for a 60% increase in Alzheimer’s disease funding, Appropriations Committee Chairman Thad Cochran (R-MS) and Ranking Member Barbara Mikulski (D-MD) and Subcommittee Chairman Blunt and Ranking Member Murray are making history. More importantly, they are demonstrating to the millions of Americans affected by this devastating and fatal disease that they will not suffer indefinitely.”

He continues:

“As we look forward to the announcement of the first Alzheimer’s professional judgment budget next month, the momentum behind the fight to end Alzheimer’s has never been greater.”

What do you think about this landmark increase in Alzheimer’s research funding? Are we doing enough to hit our national goal of effectively treating and preventing Alzheimer’s by 2025? Share your thoughts with us in the comments below. 

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Benefits of Deep Brain Stimulation for Alzheimer’s

Deep brain stimulation is a neurosurgical procedure that has been shown to be an effective form of treatment for several disorders, including Parkinson’s disease. A new study found that deep brain stimulation may also be helpful when it comes to treating Alzheimer’s disease and related forms of dementiaBenefits of Deep Brain Stimulation for Alzheimer's

Learn more about the treatment method and the groundbreaking new study on brain stimulation.

Deep Brain Stimulation: An Overview

Deep brain stimulation (DBS) is a neurosurgical procedure where electrodes are implanted in certain parts of the brain. These electrodes send electrical impulses to specific parts of the brain to change brain activity. The impulses can regulate abnormal impulses or affect certain cells and chemicals in the brain.

Controlled by a pacemaker-like device under the skin, DBS has been beneficial for a number of disorders including Parkinson’s disease, essential tremor, chronic pain, major depression and obsessive-compulsive disorder.

It is important to note that there are potential serious neuropsychiatric side-effects from deep brain stimulation, which range from apathy to hallucinations and compulsive gambling to hyper-sexuality and depression. These side effects are usually temporary and potentially reversible. Electrodes may also become displaced during surgery causing personality changes, but this can also be fixed and identified through a CT scan.

Using Deep Brain Stimulation to Create New Brain Cells

The latest study to look at the effects of DBS on dementia found that it may be a therapeutic target for dementia and related disorders.

The study, conducted at the Nanyang Technological University in Singapore, implanted DBS electrodes in rats. The electrodes were programmed to target the ventromedial prefrontal cortex, which is a part of the brain responsible for a higher level of cognitive function. Researchers noticed a significant improvement in the ability of the rats to perform memory tasks after constant stimulation of the ventromedial prefrontal cortex. They also saw new neurons being formed in the brain, compared to the control group.

This groundbreaking result means that new brain cells can be created through DPS, which can improve memory retention. The increase in neurons may also reduce anxiety and depression, commonly felt by people living with varying forms of dementia.

Ajai Vyas, Assistant Professor at NTU’s School of Biological Sciences said:

“The findings from the research clearly show the potential of enhancing the growth of brain cells using deep brain stimulation. Around 60% of patients do not respond to regular anti-depressant treatments and our research opens new doors for more effective treatment options.”

Dr Lim Lee Wei, associate professor at Sunway University Mayalsia and researcher added to the enthusiasm of his colleague stating:

“Memory loss in older people is not only a serious and widespread problem, but signifies a key symptom of dementia. At least one in 10 people aged 60 and above in Singapore suffer from dementia and this breakthrough could pave the way towards improved treatments for patients.”

Did you know that deep brain stimulation could be used to treat dementia? What are your thoughts on it as a treatment for memory loss? Share your thoughts with us in the comments below.

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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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