Category Archives: Awareness & Activism

Do your part in the fight against Alzheimer’s by joining new registry

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As family caregivers to those with Alzheimer’s or other forms of dementia, we can feel helpless in the fact of such a brutal disease. What could we possibly do to help find a cure or effective treatment? While we know researchers are hard at work, they can seem far removed from the daily grind that a family finds themselves in when dealing with dementia.

Joining a registry is a simple way to contribute to the cause. I belong to the Alzheimer’s Prevention Registry. According to the registry, 80 percent of studies are delayed because too few people sign up to participate.  So you can really make a difference.

A new registry, the Synexus HealthyMinds Registry is seeking those 50 and older in the U.S. who do not have an Alzheimer’s diagnosis. The registry is free to join and all participation is done online for your convenience. Once a year, you will be asked to fill out a health and lifestyle questionnaire and take a series of online tests to gauge cognitive function. The registry I participate in is similar and I actually enjoy the tests because they are like brain games.

Check it out and if you are interested, please join and share with others. We are all in this important effort together.

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AlzAuthors marks 4th anniversary with a book sale

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I am so proud to be part of the AlzAuthors group. I can’t believe the group of Alzheimer’s and dementia writers is marking its 4th anniversary! It has been so rewarding to see this group expand over the years and I applaud the hard work of the core founders who have shared our books to caregivers around the world.

If you haven’t visited the website in awhile, check out the redesign. I love it!

To mark the occasion, AlzAuthors is hosting a book sale and raffle. Choose from 19 free and discounted books. My award-winning collection of personal essays, The Reluctant Caregiver, is just 99 cents during the promotion, which runs through June 27th. (Note: Amazon is still processing the discounted rate as of Friday morning, but you can use this link to buy the book for 99 cents at other major digital book retailers right now.)

You can also enter a raffle to win free books from select AlzAuthors contributors.

Please spread the word to fellow dementia caregivers and thank you for your support!

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Amazing Benefits of Massage for Alzheimer Disease Patients — The Diary of An Alzheimer’s Caregiver


We often overlook the powerful benefits of human touch. Learn how massage could lift the spirits of your loved one with Alzheimer’s. And don’t forget about the benefits of massage for yourself! I find a massage to be so rejuvenating.

via Amazing Benefits of Massage for Alzheimer Disease Patients — The Diary of An Alzheimer’s Caregiver

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June 13, 2019 · 11:54 am

Bipartisan effort to provide families with vital data on struggling nursing homes

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Any kind of bipartisan effort in today’s toxic political climate is reason to cheer. When it involves uncovering nursing homes offering substandard care, it’s all the more reason for caregivers to be grateful.

Pennsylvania senators Bob Casey (D) and Pat Toomey (R) joined forces to release a report titled, “Families’ and Residents’ Right to Know: Uncovering Poor Care in America’s Nursing Homes.”

An investigation into reports of abuse and neglect at nursing homes in the senators’ home state prompted the report. It focuses on struggling nursing homes that have been designated a Special Focus Facility. There are 88 nursing homes that are participants in the program. Approximately 400 nursing homes are identified as candidates. Participants receive more frequent inspections and are identified to the public; candidates are not.

What the senators wanted family caregivers like you and I to know are the names of the hundreds of SFF candidate facilities, so that we can make the most informed decision possible when it comes to our loved one’s care.

You can review a list of SFF participant and candidate facilities that’s included in the report. You can also read disturbing reports of neglect and abuse that has been reported at these facilities, which includes allowing residents to escape, providing inadequate medical care and sexual assault.

I discovered a facility that my father stayed at briefly post-surgery. At the time, the facility admitted they did not have the resources to care for my father, who was in the mid-stages of dementia and often wandered.

Much more needs to be done to ensure that our nation’s nursing homes are providing proper care to our loved ones, but providing this bit of information helps families make more informed choices.

 

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Toxic Positivity Mongers in Dementialand — The Blog That Currently Has No Name

Have to say I agree with this perspective wholeheartedly. As the author of The Reluctant Caregiver, I have empathy for those of us who often find it difficult to be Miss Mary Sunshine all of the time. Sometimes life just sucks. People mean well but the best gift you can offer in such situations is simply a sympathetic ear.

I was recently introduced to the term “toxic positivity.” I instantly knew what the term referred to, and I could relate. I see it on social media….Positive vibes only…Think happy thoughts…There’s always a silver lining…It’s a great day to have a great day. And I can remember times when I was struggling and someone shot […]

via Toxic Positivity Mongers in Dementialand — The Blog That Currently Has No Name

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May 30, 2019 · 8:36 pm

Medicare and Respite Care – What Does it Cover? — The Imperfect Caregiver

Respite care is an issue I care about passionately, prompting me to launch Respite Care Share a few years ago. This guide offers an excellent overview about what respite care benefits Medicare covers. 

When it comes to our loved ones that may be living with health conditions that hinder their ability to perform everyday functions, we want to provide them with the best care. Statistics show that often, it is a family member that takes on this role as a full-time caregiver. Being a caregiver is one of […]

via Medicare and Respite Care – What Does it Cover? — The Imperfect Caregiver

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May 2, 2019 · 5:05 pm

Protect your loved one with dementia from becoming a victim of a scam

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It’s heartbreaking to hear stories where elder loved ones are scammed out of thousands of dollars. These criminals can be found all over the world, only needing a list of phone numbers or email addresses to find their next victim.

A new study has found that those who are more prone to becoming scam victims may be at greater risk of dementia. In today’s world, it’s not just phone scams that one has to worry about, but online scams as well.

My father was not a phone person, but he did send money to a variety of religious organizations. They were supposed to be representing Catholic churches or charities, and he would get a small token or prayer request in exchange for whatever he sent. It may have been totally legitimate, but after he was gone, I found hundreds of pieces of correspondence from these groups. I wonder if he gave more as his dementia progressed.

My mother was the phone person in our family. She didn’t have dementia but she did have a quality that made her potentially susceptible to scammers: loneliness. She loved to talk on the phone to people, whether she knew them or not! They would be her friend by the end of the conversation. I remember getting upset with my mother when she told a telemarketer that she had won the lottery. Why would you share personal financial information with a stranger? My mom’s response was that the telemarketer had said she was a “nice lady.” Sigh. Fortunately, nothing came of the incident, and to be fair to my mother, she was aware of the scams that were going around targeting seniors.

Credit.com has a nice resource which breaks down the  most common online scams and offers tips to help seniors avoid becoming a victim. Monitoring your elder loved one’s financial statements is key. If your older relatives enjoy going online, there are a set of simple steps you can take to provide them a secure experience. Staying vigilant is the best way to combat such criminal activity.

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