Tag Archives: Alzheimer’s

January 22, 2024 · 8:00 am

Can robots help those with dementia engage with past and present?

Social robots have been met with an understandable level of skepticism by elder care advocates. Can generative AI take such technology to the next level? A recent Wired article highlighted interesting developments in this field. Instead of focusing on robots substituting for human companionship or serving as a virtual caretaker, a group of researchers are developing robots “for the soul.”

One group that is being targeted for this technology designed to spark sensations and experiences are those with dementia, with technology meeting them where they are, whether that is surreal or relived memories. One example cited in the article is a robot playing birdsong that prompts an introverted woman with dementia to mimic a bird and speak about her love of birds. Another product that has been created is a pillow with panels that can be personalized to one’s life experience. When a panel is touched, a familiar sound is played. For example, if I was programming this for my father I would include a rendition of Danny Boy, my father’s favorite song. I might include the sounds of a ship, because my father loved ships.

Most of the article focuses on the development of QT, a chatty robot being tested at a memory care center. The technology has a ways to go, but one of the interesting developments is how the robot can spark conversations between residents and visitors. Encouraging such interactions can have a positive impact on all involved.

While I don’t envision a flood of robots caring for the elder population anytime soon, assistive technology is rapidly developing. Fall detection products are commonplace now, and proved to be an essential tool when caring for my mother. Smart, connected devices like the Amazon Echo Show and the Alexa Emergency Assist service keep busy caregivers connected to their elder loved ones, allowing them to monitor virtually. These products provide long-distance caregivers like I was with some peace of mind.

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January 15, 2024 · 8:00 am

Keeping your loved ones with dementia warm and safe during winter weather

The new year has started off with a blast of winter weather that is impacting a large portion of the U.S. The frigid temperatures are a sobering reminder to take special precautions if you are caring for someone with dementia.

Each year, cases are reported of those with dementia wandering away from home and dying from exposure during the winter. My dad was a dementia wanderer, so these tragic cases hit close to home for me. There are several things to keep in mind when caring for loved ones with dementia on top of normal winter weather safety tips.

Creative Carer had a Facebook post this past week that offered excellent tips on how she kept her mother warm and comfortable during the winter. Some tips to keep in mind:

  • Depending upon the stage of the disease, your loved one may not be able to accurately communicate if they are comfortable temperature-wise. It’s important to be hands-on and monitor for signs of discomfort.
  • As Creative Carer points out, pay special attention to the extremities during cold weather.
  • Think about smart layers. A fidget blanket could serve dual purposes, by occupying restless hands while keeping the body warm. Be cautious about bundling with too many layers of clothes, as it could make it difficult to use the restroom and restrict movement.
  • When severe winter weather limits outdoor activities, make plans to keep loved ones occupied indoors. Restlessness can lead to wandering attempts.
  • Don’t forget about bath time and take extra precautious to keep your loved one warm and comfortable.
  • Knowing your loved one’s preferences before they developed dementia can serve as a guide to maintaining comfort even once they become non-verbal. My father didn’t like things around his neck, as it made him feel like he was being strangled, so scarves would not have been a good choice for him. However, Dad liked wearing hats, so that would have been acceptable.

I hope you and your loved ones stay safe during this winter season.

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January 6, 2024 · 3:08 pm

New year, new opportunities for caregivers

Happy New Year! I hope you and your loved ones had a good holiday season. While we enter another year fraught with tension on many fronts, one way to harness anxiety is by focusing on positive actions you can take to make a difference.

Such actions can come in many forms. Maybe this is the year you finally join a caregiver support group. It’s an election year so perhaps you join forces with a group like Caring Across Generations and their campaign for paid leave for family caregivers. Have you thought about your end-of-life care wishes and do you know the wishes of your loved ones? Make it a priority this year to document these choices in a form that’s legal where you reside.

Perhaps you or a family member have been diagnosed with Alzheimer’s disease or another form of dementia and you are seeking trusted information. Consider an excellent community resource like AlzAuthors, where you can read books from dementia caregivers, medical professionals, and those who are living with dementia. That includes my award-winning book, The Reluctant Caregiver.

If you’d like to get involved in Alzheimer’s research, explore the Alzheimer’s Association TrialMatch. On that note, the Center for Information and Study on Clinical Research Participation (CISCRP) is seeking individuals age 65+ living in the U.S. diagnosed with mild Alzheimer’s and/or their caregivers to participate in a virtual interview project. Note that CISCRP is not recruiting volunteers for a clinical trial, but rather to learn from patients how to best create a clinical trial that addresses the unique needs of individuals with Alzheimer’s. For more information about the interview project, please contact research associate Madeline Heaney at mheaney@ciscrp.org or call 617-725-2750 ext. 416.

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December 20, 2023 · 11:27 am

Marking 12 years since Dad’s death

Today marks 12 years since my father died.

The years following his death have been tough, both on a personal and global level. I am grateful for having found such an amazing community of dementia caregivers and advocates who are tirelessly working to gain better resources and support. No one welcomes a diagnosis of Alzheimer’s or other forms of dementia, but my family’s experience has opened my eyes to challenges in our health care system that I otherwise would not have known about.

I began The Memories Project blog in honor of my father and will continue to advocate for better dementia care treatment and family caregiver support.

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December 1, 2023 · 9:01 am

Wine, Women, and Dementia a candid and moving caregiver documentary

Recently I had the chance to see the documentary, “Wine, Women, and Dementia.” The film was made by Kitty Norton, who quit her job to care of her mother who had dementia. Norton documented the roller coaster ride of family caregiving with her sister, creating a popular blog, Stumped Town Dementia, and sharing videos of the sometimes hilarious, sometimes tragic moments involved in being a dementia caregiver.

Through her blog, Norton built an online community which offered each other support and advice as they experienced their own caregiving journeys. In the documentary, Norton travels across the country to visit these caregivers and learn more about them. The result is a brutally honest, moving and in certain moments, hilarious documentary.

The candid tone of the documentary aligns with my own experience and approach to caregiving, as I captured in my book, The Reluctant Caregiver and as I share here on The Memories Project. If you’ve seen the film and would like to check out my book, you can grab a free copy through December 15, 2023 via this Prolific Works giveaway.

By not shying away from the difficult moments, we better prepare caregivers for the future. I also appreciate the value of online communities that the film highlights. While the internet can seem overloaded with toxic behavior, if you look in the right places, you can find good people like those included in this film who have build a supportive caregiver community.

You can visit the Wine, Women, and Dementia website for details on upcoming screenings.

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November 6, 2023 · 8:00 am

Marking National Family Caregivers Month and National Alzheimer’s Month

November is both National Family Caregivers Month and National Alzheimer’s Month. The National Family Caregivers Month theme for 2023 per Caregiver Action Network is is #CaregiversConnect. Visit the CAN website for resources on how you can connect with other caregivers and caregiver support services.

In honor of National Alzheimer’s Month, I’d like to share a giveaway from AlzAuthors. During the month of November, while supplies last, you can receive a free audiobook, “Alzheimer’s and Dementia Caregiving Stories: 58 authors share their inspiring personal experiences” to those in the US and UK and a free copy of the e-book version, which is available to readers around the world. Visit the AlzAuthors website for more details.

I’d like to share this message from AlzAuthors in support of all caregivers. I know I struggled as a family caregiver by constantly being in doing mode. Respite can be difficult to secure and self-care is often relegated to a low priority, but even moments of pause can make a difference.

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October 2, 2023 · 8:00 am

Don’t wait: Discuss end-of-life care wishes for those with dementia

The American Society on Aging, along with Compassion & Choices, hosted a webinar recently on honoring the end-of-life care wishes of those with dementia.

Also check out this interactive exhibit that discusses end of life care from a variety of individual perspectives.

This is an issue that I encourage everyone to consider, as my father’s end of life care was not what I wanted it to be. But without a roadmap (as is discussed in one of the videos above), my mother and I were forced to muddle through on our own. As I discussed in my book, The Reluctant Caregiver, my mother and I were at odds when it came to care options for my father as he neared the end of life. This is a common occurrence in families and can create regrets and guilt.

That’s why I suggest not waiting when it comes to discussing end-of-life care wishes after a dementia diagnosis. I also would like to point out that in the top video, honoring choices is the focus, but there are times when those wishes can’t be honored, for a variety of legitimate reasons. The ultimate goal is safety for your loved one and those caring for them.

Photo by Centre for Ageing Better on Unsplash.

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September 18, 2023 · 8:00 am

Marking World Alzheimer’s Month

September is World Alzheimer’s Month and this week on Sept. 21 will be World Alzheimer’s Day. This year’s theme is “Never too early, never too late,” with a focus on reducing the risk of Alzheimer’s by educating people on their own risk factors.

Alzheimer’s Disease International has many resources on its website, including a Dementia Fact Sheet.

While modest strides are being made in the development of medications to slow down the disease, it’s key that people understand their risk of developing Alzheimer’s and the steps they can take to reduce their risk.

Looking for ways to support the Alzheimer’s and dementia communities this month? Consider purchasing a copy of Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. It’s on sale at Amazon and includes a story I wrote about my father. Also check out my collection of personal essays, The Reluctant Caregiver, which includes further accounts of the impact dementia had on my family.

If you’d like to support an organization for World Alzheimer’s Month, consider purchasing an item from the AlzAuthors shop.

Image courtesy of Alzheimer’s Disease International.

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September 10, 2023 · 12:04 pm

Bob Barker: Alzheimer’s disease noted on death certificate

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Legendary “The Price is Right” game show host Bob Barker died Aug. 26. It was revealed last week that the cause of death per his death certificate was Alzheimer’s disease, according to NBC News. Barker was 99 years old and had suffered from serious falls in recent years but it’s unknown when he was diagnosed with Alzheimer’s disease.

Barker was one of those rare celebrities who was beloved by multiple generations. He was a mainstay of my childhood, especially before I started school and during school vacations. “The Price is Right” was my favorite game show. It was fun and exciting with the variety of games being played. The players being called out of the audience created memorable moments. Announcer Johnny Olsen (and later Rod Roddy ), the models, aka “Barker’s Beauties,” and Barker served as a second family for many kids from my generation. “Come on down!” was a catchphrase almost everyone knows, whether they were a fan of the show or not.

Watching “The Price is Right” also was my early introduction to animal rights, with Barker ending each show by reminding the audience to spay and neuter their pets. I may not have understood those terms as a child, but Barker over his long life devoted much time, effort, and money to improve the lives of animals. People has a good overview of Barkers animal rights advocacy work.

According to ET, the bulk of Barker’s estate will be donated to animal rights and military charities.

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August 28, 2023 · 8:00 am

GUIDE Model seeks to offer better support for dementia caregivers

Caregivers of loved ones with dementia face unique challenges. A new model from the Centers for Medicare & Medicaid Services, GUIDE, seeks to change that.

GUIDE stands for Guiding an Improved Dementia Experience, and the program will launch on July 1, 2024 and run for eight years in its initial demonstration phase. The model has worthy goals:

  • First, by focusing on the person with dementia, and better addressing their care needs and transitions between levels of care.
  • Support dementia caregivers by providing them with training, social services, and respite care.
  • Focus on providing sufficient support for those dementia to safely live at home for as long as appropriate and reduce the need for nursing home care.

I think most dementia caregivers will welcome such support, even if it is long overdue. It will be interesting to see how this program is implemented and how it evolves during its testing period. For more information, review the GUIDE fact sheet.

Infographic image by cms.gov.

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