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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: November-National ALZ Awareness Month

This Week in Alzheimer’s

05 Saturday Nov 2016

Posted by Ann Napoletan in Advocacy and Awareness, Call to Action, Caregivers, Face of Alzheimer's, Galaxy A List, Helpful Resources, Inspiration, November-National ALZ Awareness Month, Research, Round Up, Support system, Treatments and Therapies, USAgainstAlzheimer's

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a list, alzheimers, alzheimers news, alzheimers research, alzheimers support, alzheimers week in review

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New Alzheimer’s/Cognitive Impairment Benefit from CMS!

On November 3, 2016, it was announced that the Centers for Medicare & Medicaid Services (CMS) has finalized its decision to pay for cognitive and functional assessments and care planning for patients with Alzheimer’s disease and other cognitive impairments. This milestone marks the first time people living with Alzheimer’s disease will have paid access to care planning with a medical professional. Read more here.

Does Deep Brain Stimulation Boost Memory in Alzheimer’s Patients?

Researchers at Toronto Western Hospital and Johns Hopkins University are hopeful about a clinical trial involving deep brain stimulation. One might think of this as a pacemaker for the brain; electrodes are implanted in the brain and deliver a steady stream of electrical impulses to the part of the brain that regulates memory. The study is currently moving into its third and final phase.  Read more here.

Greg O’Brien Honored

Journalist, author, and advocate Greg O’Brien received the inaugural Bea Lerner Valor Award at September’s third annual UsAgainstAlzheimer’s Out of the Shadows Dinner. The award is given to a person living with dementia and is named to honor the mother of UsAgainstAlzheimer’s co-founder, Trish Vradenburg. Read more here. 

National Alzheimer’s Awareness Month

The White House issued a Presidential Proclamation declaring November 2016 as National Alzheimer’ Awareness Month. Read more here. 

Alzheimer’s Talks: Dr. Rudy Tanzi

The transcript and recording from October’s Alzheimer’s Talks call have been posted. The call featured leading researcher, Dr. Rudy Tanzi, who spoke in depth about his new work on a microbial hypothesis of the causes of Alzheimer’s disease.   You can find the transcript and recording here. 

Easy Actions You Can Take to Make a Difference!

  • Take 30 seconds to provide hope to others touched by Alzheimer’s!! Introducing Adversity 2 Advocacy’s Project Hope Exchange! Learn more here.
  • Join the A List 1000 today! It just takes 5 minutes, and gives you an opportunity to help shape the future. Learn more here.
  • Participate in the Health-eBrain Study to help advance the cognitive health of caregivers. Learn more here.
  • Participate in a caregiver study being conducted at Xavier University. Learn more here. 

Looking for Support?

Join the UsAgainstAlzheimer’s Facebook Support Community! We have members all over the world who possess a vast amount of experience and who understand what you’re going through. Although each of our stories is unique, we’re bonded by a common experience – Alzheimer’s (or some other form of dementia). The Community provides a safe place to share fears, frustrations, and the moments of joy we all hunger for.  Find us here.

Book Giveaway

Last but not least, click here to enter for a chance to win a copy of Chicken Soup for the Soul: Living With Alzheimer’s and Other Dementias. In the book, you’ll find 101 stories that will inspire, validate, and comfort you. Winner will be drawn Friday, November 11.

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Alzheimer’s Book Giveaway!!

02 Wednesday Nov 2016

Posted by Ann Napoletan in Books, Caregivers, Giveaways, Helpful Resources, Inspiration, November-National ALZ Awareness Month

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Alzheimer's books, alzheimers, alzheimers book giveaway, alzheimers caregivers, national alzheimers awareness month, national family caregivers month

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The contest is closed and our randomly chosen winners are Sandra Collard and Jeffrey Brown (check your inboxes for an email from me!). Thank you to all who entered! 

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Did you know that November is National Family Caregivers Month as well as National Alzheimer’s Awareness Month?

With that in mind, I’ll be giving away two signed copies of Chicken Soup for the Soul: Living With Alzheimer’s and Other Dementias. I’m blessed to have been a contributor to this compilation of 101 stories that will touch your heart and provide inspiration even during the most challenging moments.

To enter the contest, all you need to do is leave a comment on this post. I’ll draw two winners on Friday, November 11. Contest is open to anyone in the contiguous United States.

Good luck!!

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Five Helpful Tips for Caregivers

12 Wednesday Nov 2014

Posted by Ann Napoletan in Caregivers, Facts & Figures, Helpful Resources, November-National ALZ Awareness Month, Support system, Tips

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alzheimers, alzheimers caregiving, caregivers, caregiving, dementia, national family caregivers month

November is National Family Caregivers Month, an opportunity to focus on the challenges and needs of the more than 60 million Americans caring for family members across our country. As the population ages, so does the demand for caregivers. Consider this:  In 2013, over 15 million caregivers provided an estimated 17.7 billion hours of unpaid care for loved ones living with Alzheimer’s or another form of dementia. Those numbers are astounding, and they’re on the rise.

The natural tendency is to think of a caregiver as someone who cares for a loved one at home on a 24×7 basis; however, the role takes on many forms. Are you working full time and looking after a parent who still lives independently? Are you still raising children while simultaneously handling household tasks for your mother who is in the early stages of dementia? Do you oversee the care your spouse or parent is receiving in an assisted living or skilled nursing facility? These are all examples of the modern day caregiver.

If you or someone you know is a member of this ever growing demographic, I hope you’ll read on as I share five important tips to help caregivers achieve the balance and peace they dream of.

Accept help. Although most caregivers are stressed out, burned out, and worn out, they often have a difficult time asking for and accepting the help they desperately need. While doing some research in 2013, I came across the Lotsa Helping Hands website and it remains at the top of my list of recommendations. This powerful tool is free and provides caregivers with a central location to post tasks with which they could use help. Many times, family members and friends want to help, but just don’t know how – Lotsa Helping Hands solves that problem. Visit the website to find out more about how it works.

Consider some form of respite care. Simply put, you need a break. It doesn’t have to be a week in the Bahamas (although that would be nice), but scheduling an hour or two to go shopping, take a long walk, meet a friend for coffee, or just read a book can do wonders for the psyche in those moments where you feel ready to throw in the towel. To learn more about respite care, visit the ARCH National Respite Network or the Eldercare Locator website.

Find a support network. I can’t stress enough just how important this is. While friends will do their best to understand what you’re going through, nothing can replace connecting with another human being who has walked in your shoes. Contact your local Alzheimer’s Association chapter or Office on Aging for a list of available support groups. If schedules or lack of respite care prevent you from attending in person meetings, there are plenty of wonderful online options including the USAgainstAlzheimer’s, Memory People, and Alzheimer’s & Dementia Caregivers groups on Facebook, the Caregiver Action Network forum, and the Alzheimer’s Association’s ALZConnected online group.

Get organized! Check out technology designed to help caregivers stay organized; one of my favorites is a smartphone app called Carezone. If you aren’t tech-savvy, at a minimum, make sure important documents are in a safe place, preferably filed together in a folder or binder. Better yet, create a binder containing all pertinent information and documents from advance directives to a current medication list, insurance information, list of contacts, and medical history. There’s peace of mind in simply knowing that when you need something quickly, you know just where to find it.

Be gentle with yourself. We are our own worst critics, and caregivers are particularly susceptible to unhealthy self talk. Pay attention to your thoughts for a day and you’ll be surprised at how much time you spend beating yourself up. I recommend the book The Four Agreements, by don Miguel Ruiz, to all caregivers. The simple lessons found in these pages will increase your self awareness and help you manage guilt, stress, and expectations – both self imposed and those of others.

Please leave a comment if you have a tip to share with other caregivers. In the words of Charles Dickens, “No one is useless in this world who lightens the burdens of another.” 

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The Long and Winding Road

Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

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