Tag Archive for: alzheimers disease

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

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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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Alzheimer’s and Intimacy

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While it’s no secret that sexual relationships occur among seniors and even seniors with dementia, the topic still remains extremely taboo. A recent trial brought the subject to national headlines and now caregivers everywhere are faced with the question of consensual sex among aging adults with dementiaAlzheimer's and Intimacy

When is dementia too far advanced for a person to consent to sex? Learn more about how assisted living communities are handling Alzheimer’s and intimacy while protecting the safety of residents.

The Controversy Surrounding Alzheimer’s and Intimacy

Sexual relationships among seniors living in assisted living communities are not uncommon, so why is there such a struggle when it comes to discussing seniors with dementia having sex?

The controversy was recently in national headlines when a 78-year-old man in Iowa was charged with raping his wife, who was living in a nursing home and has Alzheimer’s disease. The staff in the community maintained that his wife, their patient, was no longer able to consent to sex. He was eventually found not guilty of the crime but the trial did bring national awareness to a topic that often feels taboo.

The question remains how senior living communities are handling this confusing and emotionally driven issue.

At Hebrew Home in New York, the community has a written policy to clarify any confusion over the sex life of residents and has for 20 years. Daniel Reingold, CEO of RiverSpring Health, the nonprofit that runs Hebrew Home, acknowledges the sensitivity of the issue stating, “It was controversial in 1995 and it’s controversial today.”

He went on to say, “We knew that there was intimacy occurring, and we considered it to be a civil right and a legal right. We also felt that intimacy was a good thing, that touch is one of the last pleasures we abandon and lose as we age.”

Sensitivity Surrounds Issue in Senior Living Communities

While the policy at Hebrew Home is a step in the right direction, law professor at Albany Law School and bioethics professor at Albany Medical College, Evelyn Tenenbaum, cautions that even with a written policy, staff may have trouble differentiating between a consensual and non-consensual relationship.

“For example, suppose you have a couple and the woman believes that the man she’s seeing is her husband,” says Tenenbaum. “Then she consents to a sexual relationship. Is that really consent if she doesn’t understand who he is and that she’s not married to him?”

According to the American Health Care Association, there is no clear answer to defining a consensual sexual relationship when one or both partners has dementia.

Patricia Bach, a geriatric psychologist began looking for data to help clarify the question and found that little empirical evidence even existed. When she surveyed members of the American Medical Directors Association, she found that only 25-30% had completed formal training regarding intimacy and sexuality in seniors.

As the aging population grows this issue is going to become increasingly pressing. What do you think about defining consensual sex when one or both partners has dementia? Share your thoughts in the comments below. 

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I Am More than My Diagnosis

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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.

Stories My Grandfather Told Me

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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

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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