Tag Archives: alzheimers support

This Week in Alzheimer’s

05 Saturday Nov 2016

Posted by 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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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!

  • 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.

World Alzheimer’s Month: Do One Thing!

06 Tuesday Sep 2016

Posted by in Advocacy and Awareness, Call to Action, Caregivers, Galaxy A List, Help Stamp Out Alzheimer's, Helpful Resources, Mom, USAgainstAlzheimer's, Washington, World ALZ Month

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Labor Day has come and gone, and we’ll soon be thinking about the holidays. This month, though, is World Alzheimer’s Month, and it’s a great time to think about that ONE THING you can do to make a difference!! You don’t have to donate thousands of dollars or invest hundreds of hours to make an impact.

 

Here are six things you can do right now!

Register for the A List 1000. Click here to read more, share with others who may be interested, and join today to honor your loved one and mark World Alzheimer’s Month. I joined to honor my mom, Marilyn, and it makes me feel good to know the A List will bring voice and purpose to our story. I need to know our experience wasn’t in vain. 

Leave a comment on the USPS site urging issuance of an Alzheimer’s fundraising stamp.  Take a few minutes and to leave a comment for the Postmaster General encouraging her to approve an Alzheimer’s fundraising stamp. The Breast Cancer semipostal stamp has raised over $81 million since its inception and we can do the same for Alzheimer’s disease! Click here to visit the site. 

Join a support group.  I didn’t join a support group until after my mom had died, and waiting was such a big mistake. I had no idea how much I could benefit from interacting with others who understood what I was going through. If you aren’t able to attend a local group, join an online group. I co-moderate the UsAgainstAlzheimer’s Online Support Group – it’s a safe, welcoming place where we share our experiences, seek support, and offer support to others. Although my mother has been gone for almost four years, I still find great comfort and validation in the group.

Write a letter to your representative. Our leaders have the power to increase spending on Alzheimer’s care and research. As voters, it’s up to us to let them know this issue is critical. Click here to find your senator and here to find your representative.

Share your story.  Your story matters and sharing it can inspire others and let them know they aren’t alone on this journey. Talk to others about your experience or click here or here for places to share your story online. Also, please consider joining the A List 1000.

Make a donation to your favorite Alzheimer’s charity. Two of my favorites are UsAgainstAlzheimer’s and the Cure Alzheimer’s Fund. A full 100% of your donation to these organizations goes directly to the mission. The founders and board of directors, respectively, cover all overhead.

 

Alzheimer’s Caregiving: Thoughts for the New Year

28 Sunday Dec 2014

Posted by in Advocacy and Awareness, Books, Caregiver Burnout, Caregivers, Guilt and Regrets, Helpful Resources, Ruminations, Support system, Tips

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As 2014New Year 2015 draws to a close, I’ve been thinking a lot about the pressure caregivers feel to be perfect. I see this on a regular basis through my role as co-moderator of the USAgainstAlzheimer’s online support community. Family members find themselves drowning in guilt because they’ve set unreasonably high expectations for themselves; often these expectations are so lofty that no human being could possibly live up to them.

I think an admirable goal for 2015 is to be more gentle with yourself. Pay attention to your self-talk, and when you realize you’re beating yourself up, make a conscious decision to S-T-O-P. I know it’s easier said than done, but try and have faith in the decisions you make, for there is no doubt you are doing the very best you can.

As don Miguel Ruiz reminds us in The Four Agreements, your “best” will be different from day to day, perhaps from hour to hour. When you are sick with a winter cold or exhausted due to lack of sleep or simply at your wit’s end, your best will be different from when you are feeling 100%. That is a fact, and that, my friend, is okay.

Here are four things I hope you’ll consider in the coming year.

  • If you care for a loved one at home, seek respite. There is no shame in caring for yourself. In fact, it’s a necessity. Your ability to do what’s best for your loved one depends on your own physical, emotional, and mental wellbeing. The National Respite Locator is a wonderful place to start when searching for assistance.
  • Do something to raise awareness or support other caregivers. Whether you simply share an article on social media or write a blog post, participate in your local Walk to End Alzheimer’s, or offer support to a fellow caregiver online or in person, paying it forward will give you a sense of purpose. The single thing that has helped me most in this journey has been reaching out to others.

I wish each and every person who visits this page a blessed 2015. May you find support, comfort, and peace of mind in the coming year.

With love,
Ann