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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: caregiving

Alzheimer’s Roundup

22 Sunday Jan 2017

Posted by Ann Napoletan in Advocacy and Awareness, Care Options, Diagnosis, Early Onset, Expectations, Face of Alzheimer's, Prevention, Round Up

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alzheimers, alzheimers diet, caregivers, caregiving, dementia, dementia village, living with alzheimers

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Who will care for the caregivers?

“There are some 40 million Americans like my patient’s daughter. Every day, they help a parent, grandparent, relative or neighbor with basic needs: dressing, bathing, cooking, medications or transportation. Often, they do some or all of this while working, parenting, or both. And we — as doctors, employers, friends and extended family — aren’t doing enough to help them.”  ~Dhruv Khullar, M.D.      Read full article

After the diagnosis…

You’re worried. Your mom has shown increasing forgetfulness for months. She even got lost going to the grocery store she frequents. You hoped things would resolve themselves, but instead, they kept getting worse. You took her to the doctor, hoping the problem was due to a bad interaction of her many medicines or a treatable infection. Instead, you got the dreaded diagnosis: Alzheimer’s. Now what?    Read full article

Dementia Village coming to San Diego

A San Diego nonprofit is taking an unorthodox approach to help seniors cope with Alzheimer’s disease. It’s building a village for them to spend time during the day. It’s not residential. But the village is modeled on San Diego in the 1950s, complete with vintage cars, period music, payphones and shops from the pre-shopping mall, pre-Wal-Mart era. The nonprofit says research suggests this type of visual reminder might improve cognitive function and quality of life of Alzheimer’s patients over 65.   Read full article

Eating for good brain health

“Diet absolutely does play a role. The brain is like any other organ that is susceptible to (foods) that can protect against oxidation damage. … Think of oxidation like a fire getting started. These (good) foods act like little tiny fire extinguishers that help put out those fires that otherwise would cause damage leading to loss of brain function.” ~Liz Applegate, Professor, UC Davis    Read full article

Living with early stage Alzheimer’s

“These days my ministry is Alzheimer’s. I am so much happier now that I’ve accepted my diagnosis. There’s a stigma associated with memory-loss disorders and oftentimes people are afraid to ask for help; I believe my calling is to help reduce that shame. You don’t have to be embarrassed to have Alzheimer’s.”  ~Rev. Cynthia Huling Hummel, D.Min  Read full article

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Two Upcoming Events: Caregiving Conference and Lewy Body Dementia Webinar

22 Tuesday Nov 2016

Posted by Ann Napoletan in Caregivers, Events, Helpful Resources

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caregiving, caregiving conference, caregiving event, caregiving webinar, lewy body dementia, lewy body webinar

 

The first annual Caregiving.com National Caregiving Conference is coming up in Chicago on December 2nd and 3rd. Learn more on the registration website or find out how you can attend virtually via webinar. If you’re a professional, the conference qualifies for CEU credits.

Friday includes optional intensive sessions on various topics, while the main conference will take place on Saturday. Agendas for both days can be found here. 

 

The Lewy Body Dementia Associationlbda and Lewy Body Dementia University are offering a series of free short videos and educational webinars for both LBD families and healthcare professionals. The next webinar is December 5th at 3pm ET. 

Attendees will have an opportunity to ask questions of Dr. Bradley Boeve, Professor of Neurology, Division of Behavioral Neurology and Center for Sleep Medicine, Department of Neurology, Mayo Clinic College of Medicine, Rochester, MN. Dr. Boeve will focus on LBD clinical care.

You can also visit the website to view recordings of the previous webinars featuring an update on the latest LBD research and a discussion on clinical trials.

 

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Magnify Your Voice: Join the A List 1000 Today!

20 Saturday Aug 2016

Posted by Ann Napoletan in Advocacy and Awareness, Call to Action, Caregivers, Galaxy A List, Helpful Resources, Life After Caregiving, Mom, Quotes, Research, Support system, USAgainstAlzheimer's

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a list 1000, alzheimers, Alzheimers advocacy, caregiving, dementia, galaxy brain trust, usagainstalzheimers

“Together we can magnify our voice. Validate our journey. Help others too.”   ~Meryl Comer, Caregiver, Advocate, and President, Geoffrey Beene Foundation Alzheimer’s Initiative

So often, we, as caregivers, feel isolated, alone, and misunderstood. We talk, but is anyone really listening? Does anyone even care what we have to say?

The last thing we want to believe is that our journey has been in vain. Whether you are living with dementia or are a care partner to someone with dementia, you know you have an abundance of experience and insight that can help others on this path. You know there is purpose in your story.

What if there was a free, easy way for caregivers and individuals who are living with dementia to share personal experiences and valuable information and insights with researchers? What if we could do something to strengthen the collective voice of people just like us? Well, for the first time ever, that opportunity exists!

Every AD support group should join the A List 1000. Think of the power when together we make our patient/caregiver preferences known. ~Meryl Comer

The A List 1000 is a free, anonymous, online community of self-identified, diverse participants who meet any of the following criteria.

  • Have been diagnosed with MCI, Alzheimer’s, or another form of dementia
  • Believe you are at risk for Alzheimer’s or another form of dementia
  • Is or have been a caregiver to someone living with Alzheimer’s or another dementia

A List members will use their collective voice to accelerate research and bring a new level of understanding and value to self-reported patient and caregiver information. Simply put, we want researchers, lawmakers, advocacy groups, the medical community, and other important agents of change to HEAR US and put our valuable input to work!!

We will:

  • Help federal and state governments understand how they can provide financial support to families through grants and other means.
  • Help researchers understand how doctors, patients, and families can work together to improve the treatment approach and experience.
  • Help lawmakers better understand what patients and caregivers need right now and what is most important to them.
  • Help advocacy groups to better serve those they support.
  • Help test technological devices aimed at making life easier for caregivers and people living with dementia.
  • Help further research by participating in clinical trials.

Members of the A List will be offered various opportunities based upon their specific situation. However, it is completely up to each individual to decide which to participate in, and your information is always anonymous! It may be something as quick and easy as an online survey, but it will be highly impactful!

As someone whose life has been changed by Alzheimer’s disease, I’m extremely excited about this first of its kind initiative! This is a unique chance for caregivers and people living with dementia to be heard and to have our opinions and experiences considered and validated. It isn’t often that we get an opportunity to put our hard earned knowledge to work for the greater good – but the A List is making that possible!

I joined the A List to honor my beautiful mother, Marilyn, who left me almost four years ago. I hope you’ll honor someone important to you by registering today! Click here to join the A List 1000 today and give VOICE to your story! 

 

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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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