Tag Archives: Alzheimer’s

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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Remembering a friend and fighter for Alzheimer’s caregivers

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I was shocked and saddened to learn that Pamela Jo Van Ahn, executive director of Amy’s Place, died on June 15th.

If you’ve followed my blog for awhile, you’ve heard me talk about how much I loved Amy’s Place, serving those with Alzheimer’s and other dementias and their caregivers. It was such a welcoming, non-judgmental environment, and offered numerous cultural and education events each month.

I loved Pam’s passion and compassion. She was so giving of herself and fiercely devoted to helping caregivers. She was humble and reluctant to accept praise for her work. When she was nominated for a caregiver award earlier this year, she said in an email: “It is not easy for me to be recognized for something I did with a lot of support, help, and caring from others–like you…”

Pam was so supportive of my areas of caregiver advocacy. She introduced me as “the author” when I published my first book, The Reluctant Caregiver, and allowed me to test my care bag prototype that is an integral part of Respite Care Share with members of the Amy’s Place caregiver support group.  img_20170215_172858899

As I was reeling from the news of Pam’s death, I read a piece by a former colleague of mine who just lost his 20-year-old son to cancer. He ended his poignant essay by quoting another journalist, Mike Royko, who wrote after his wife’s death: “If there’s someone you love but haven’t said so in a while, say it now. Always, always say it now.”

We all need the sobering reminder to never take the people in our lives for granted. Never hesitate to call, email, or text your love or appreciation of them.

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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

‘What They Had’ will resonate with dementia caregivers

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I saw an excellent movie recently that I wanted to share with others who are or have been dementia caregivers. The movie is called, “What They Had,” and it has a great cast, starring Blythe Danner, Hilary Swank, Robert Forster and Michael Shannon. The film has a fairly simple plot: matriarch Ruth’s dementia is getting progressively worse, and the family is drawn together to figure out the next steps.

Those of us who have been dementia caregivers know what’s coming next, to a certain extent. The family’s internal dynamics are stretched to their breaking points as they each approach the “solution” to caring for the woman they love who is losing her mind and memories of them.

What is remarkable about the film is how realistically it depicts the challenges of a family grappling with Alzheimer’s. First-time director Elizabeth Chomko, whose grandmother was diagnosed with Alzheimer’s, captures the raw and complex emotions perfectly. The movie is uncomfortable to watch in a good way, in that the plot, dialogue and acting is so realistic that you feel like you are eavesdropping into a family’s nightmare.

Watch the trailer:

I related quite a bit to the character of Nick, who is the son and brother. He’s the hands-on sibling, because he lives near the parents in Chicago, while Swank’s character Bridget is the sister who moved away to California. Nick has understandably built up some resentment and even though he comes across as pessimistic and critical, he cares deeply and understands the mother’s condition in a more realistic way than the rest of the family. I related so much to Nick’s frustration with the rest of the family who were overly optimistic or avoiding the tough decisions, as I dealt with that with my mother when making medical decisions for my father.

Bridget’s response to being thrown into a family crisis prompts her to question everything about her life, including her marriage. Danner plays the character of Ruth with heartbreaking tenderness, though there are moments of humor as well. And Forster, Ruth’s husband and primary caregiver, demonstrates a loving resilience underneath his gruff, practical exterior.

Both Danner and Swank have experienced real-life caregiving, which I think brought an extra layer of realism to their portrayals.

The film is available on video-on-demand services. (I watched it on Vudu.) It does contain a fair amount of profanity, but it seemed to be a natural fit for the characters’ personalities. If you’ve seen the movie, I’d love to know what you thought about it.

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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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Latest Alzheimer’s report demands action

The Alzheimer’s Association released its 2019 Alzheimer’s Disease Facts and Figures report, and the statistics are sobering. Almost 6 million Americans are living with Alzheimer’s disease, and it is the sixth-leading cause of death in the U.S.

On the caregiving front, more than 16 million Americans are providing unpaid care for people with Alzheimer’s and other dementias. The value of their work is approximately $234 billion.

While the numbers are grim, the 2019 report makes crystal clear that we need bipartisan support at the federal level in addressing what is a health care crisis. Alzheimer’s disease is so costly, yet lags in research funds. Alzheimer’s caregivers need far greater support, both financially and in respite care.

Read the full report on the Alzheimer’s Association website.

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(Infographic courtesy of the Alzheimer’s Association)

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