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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Sandwich Generation

National Alzheimer’s Awareness Month: Health-eBrain Study

31 Friday Oct 2014

Posted by Ann Napoletan in Advocacy and Awareness, Caregiver Burnout, Caregivers, November-National ALZ Awareness Month, Research, Sandwich Generation, USAgainstAlzheimer's

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alzheimer's caregiver, alzheimers, alzheimers caregiver research, alzheimers caregiving, dementia

Here’s a great way to participate in National Alzheimer’s Awareness Month!

If you are one of the 15 million caregivers looking after a loved one with Alzheimer’s or another form of dementia, your input is crucial to the success of the Caregivers’ Health-eBrain Study! Please join Meryl Comer, advocate, journalist, author, and caregiver, as a participant in this important online study.

Just 30 minutes of your time will help scientists understand how the caregiving lifestyle impacts brain performance. And you can complete the questions right from your home computer! 

You may be reading this and thinking, “I’m not caring for my parent/spouse/loved one 24×7 at home. I just oversee her care and help out with things. I’m not really a caregiver.”

I get that line of thinking. There was a time when I thought being a caregiver meant caring for a loved one at home, period. However, the definition is much broader than that.

You’re a caregiver if:

  • You’re a son or daughter supporting a parent with memory problems. They might live three doors down or in another state, but regardless, you are a caregiver.
  • You missed your daughter’s school play because you were called into action to handle a crisis with your loved one. You are a caregiver.
  • You’ve had to take time off work to drive a parent to doctor’s appointments or run home to handle a crisis. You are a caregiver.
  • On Sunday afternoon, you can be found at Mom’s house setting up her meds for the coming week. You are a caregiver.
  • You’re sandwiched right between the children you’re still raising and the parent who needs your support on a regular basis. You are a caregiver.
  • You spend your lunch hour on the phone making medical appointments and dealing with insurance companies. You are a caregiver.
  • You couldn’t get away for your usual summer vacation this year. Who would look after Mom while you were away, and what if there was an emergency? You are a caregiver.
  • You coordinate in home assistance or oversee the care provided to your loved one in a care facility. You are a caregiver.
  • You can often be found at your loved one’s house helping with household tasks like cooking, cleaning, yard maintenance, caring for pets, or shopping. You are a caregiver.

If any of these sound familiar, we hope you’ll take just 30 minutes to participate in the Caregivers’ Health-eBrain Study and share the link with others.

To begin click here –> https://www.health-ebrainstudy.org

 

 

 

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Round Up: The Latest From Around the Web

26 Tuesday Aug 2014

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregiver Burnout, Caregivers, Early Onset, Face of Alzheimer's, Helpful Resources, Music and Art, Round Up, Safety, Sandwich Generation, Silver Alert, Technology, Tips, Wandering, Washington

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alzheimers, alzheimers art, caregivers, caregiving, dementia, sandwich generation, wandering

lasso.gifCheck out these tidbits gathered from around the web over the past week….

Listen to this edition of the Diane Rehm radio show as Emmy award winning journalist, Meryl Comer, talks about her new book, Slow Dancing with a Stranger. Meryl’s husband was diagnosed with early onset Alzheimer’s at age 58, and she cared for him at home for two decades. Dr. Harvey Gralnick led hematology and oncology research at the National Institutes of Health; a brilliant man and a sobering reminder that Alzheimer’s does not discriminate. Don’t miss this poignant and enlightening conversation.

Kudos to U.S. Senator Bob Casey who announced his plans to introduce the Caregiver Corps bill. This legislation is intended to empower community agencies to build and train a pool of volunteer caregivers to provide assistance to families in need. Read more about Casey’s proposed bill in this article from LancasterOnline.

With the percentage of the U.S. population age 65 and older exploding in coming years, what exactly are we doing to prepare? As Anne Hays Egan suggests in this piece for NonProfits Online, communities should be addressing plans for the “Silver Wave” now. Time is of the essence – we can’t afford to wait.

Alzlive shares an interesting article about Evermind, a small device that plugs into wall outlets and connects to various household appliances (e.g. coffee maker, television, bedside lamp). The gadget monitors when each appliance is turned off or on and sends notifications via text message or email. A change in routine serves as an alert to distant caregivers that they should check in to ensure their loved one is okay.

This fascinating piece from The Atlantic explores the emergence of artistic talents after a dementia diagnosis. How is it that someone with severe dementia can sometimes communicate beautifully through music or art? The key is in understanding that while dementia doesn’t impact the entire brain. Undamaged areas may actually “wake up” to reveal these artistic abilities that had been previously suppressed by healthy parts of the brain.

Learn more about Project Lifesaver, a program aimed at finding missing persons and returning them safely to their homes.  Over 1,300 first responder agencies in 47 states participate, and PLI states their recovery times average 30 minutes – 95% less than standard search operations. Members wear a small GPS device that tracks their whereabouts, and rescuers are trained in how to approach and communicate with individuals suffering from cognitive impairment.

In her recent article for MariaShriver.com, Ellen Woodward Potts focuses on the sandwich generation, offering coping tips for caregivers who are stretched too thin. More and more Americans find themselves caring for aging parents while still raising children, and the associated stress can be overwhelming at best and a serious health risk at worst.

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Caregiver Study – Seeking Participants

07 Saturday Dec 2013

Posted by Ann Napoletan in Caregivers, Life After Caregiving, Research, Sandwich Generation

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Tags

alzheimers, caregiver, caregiving, dementia, research study

Posting for Laura Lewis, a doctoral student seeking current and former caregivers to participate in a research study she is conducting online. Details below.

______

Hey everyone, I am not currently a caregiver, but I am an oncology nurse and a graduate nursing student studying dementia after my experiences taking care of my grandmother at the end of her life. I am looking for help with a study I am doing for my dissertation and I am posting the information here…

Volunteers wanted for a Nursing research study on caregiving for a loved one at the end of life!

My name is Laura Foran Lewis and I am a doctoral student in the School of Nursing at the University of Connecticut. I am looking for individuals who may be willing to participate in a research study about family caregivers. The purpose of this research study is to explore the experience of caregiving for a loved one with dementia (including Alzheimer’s disease) at the end of life.

I am looking for individuals who took care of someone with dementia who passed away in the last 10 years. You may have cared for them at home, or they may have been in assisted living or in a nursing home. Participation is entirely online and includes answering a few questions about your experience as a caregiver. It can take as long or short as you like, depending on how much you decide to share.

To find out more about this study or to participate, please see the study website: http://www.caregiverstudy.weebly.com/ or email me directly at laura.foran@uconn.edu.

Thank you for your consideration!
Laura Lewis, RN, MSN, Student Investigator
Principal Investigator: Cheryl Beck, DNSc, CNM, FAAN

…Also please SHARE if you are willing! I am really passionate about helping those with dementia and their families, and your participation will help me make this study meaningful!! Thank you!!

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