Tag Archives: Alzheimer’s

HFC’s Humans of Dementia Storytelling Contest for students is seeking submissions

HFC’s Humans of Dementia Storytelling Contest is open and will be accepting submissions through April 30. This is a great way for young people to share their experiences of caring for a loved one who has Alzheimer’s or other dementias.

More about the contest: “HFC invites high school and college students to submit written or photo profiles of someone you know who has or had Alzheimer’s or related dementias.”

HFC, formerly known as Hilarity for Charity, was founded by actor Seth Rogen and his wife, Lauren Miller Rogen. Lauren’s mother developed early-onset Alzheimer’s at age 55 and died in 2020. HFC’s mission statement: “HFC is a national non-profit whose mission is to care for families impacted by Alzheimer’s disease today, activate the next generation of Alzheimer’s advocates, and be a leader in brain health research and education.”

Please share with the students in your life who have been touched by Alzheimer’s and other dementias. Encouraging our youth to share their perspectives on this disease will help spread awareness and embolden younger generations to contributing to finding effective treatments and care options.

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2022 Alzheimer’s disease facts and figures

The Alzheimer’s Association has released its 2022 Alzheimer’s Disease Facts and Figures report.

This year, the Alzheimer’s Association is taking a closer look at Mild Cognitive Impairment (MCI) and encouraging greater awareness and understanding of this condition and its relation to Alzheimer’s disease.

Here are some of the top takeaways:

  • More than 6 million Americans are living with Alzheimer’s
  • 1 in 3 seniors dies with Alzheimer’s or another dementia
  • In 2020, COVID-19 contributed to a 17% increase in Alzheimer’s and dementia deaths
  • More than 11 million Americans provide unpaid care for people with Alzheimer’s or other dementias and in 2021, these caregivers provided more than 16 billion hours of care valued at nearly $272 billion.
  • Fewer than 1 in 5 Americans are familiar with mild cognitive impairment (MCI), which can be an early stage of Alzheimer’s
  • About one-third of people with MCI due to Alzheimer’s disease develop dementia within 5 years of diagnosis

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Reflections on death being more about the journey than the destination

Photo by Greg Rakozy on Unsplash

I recently had the privilege of writing a blog post for The Conversation Project. My father died 10 years ago and in May, I will be marking seven years since my mother’s death. I’ve had a lot of time to think about end of life issues in the years since their passing and I’ve shared my perspectives here on The Memories Project blog and in my book, The Reluctant Caregiver.

In my post for The Conversation Project, A Good Death Is More about the Journey than the Destination, I discuss my family’s reluctance to talk about death and end of life issues, and how that impacted their end of life journeys, albeit in very different ways. My father’s death impacted how I cared for my mother, when just several months later, she was diagnosed with cancer.

Neither of my parents experienced the kind of death that I would want for myself, and that is why it has become such an important advocacy issue to me. Please talk to your loved ones, discuss your end-of-life wishes and document it all so that you can have some peace of mind when that phase of life is reached. What I wish for everyone is that you can find the time to simply be with your loved ones who are nearing the end of life, and not overly preoccupied with medical care duties. Just like at the beginning of life, it’s important we have those bonding moments at the end of life as well.

Visit The Conversation Project for tips and guides on how to start these important conversations with your own family.

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Studying blood vessels in the brain to develop targeted treatment for Alzheimer’s

There is more interesting research going on in the world of Alzheimer’s. Scientists are examining whether the brain’s infrastructure plays a role in a person’s risk of developing Alzheimer’s. A damaged vascular system in the brain could develop cognitive performance issues, akin to an aging power grid that struggles to deliver power to a city, according to the research discussed in this Stanford Medicine Scope blog post.

In looking at a genetic atlas of the brain, researchers found that the “majority of the top Alzheimer’s risk genes are significantly expressed in the [brain’s] vasculature.” If you want to do a deep dive into the research, take a look at the study published in Nature.

The new technology used to create a genetic atlas and the accompanying discoveries give Alzheimer’s researchers new avenues to explore. No cause and effect has been established yet between brain vascular damage and Alzheimer’s risk, but there will now be additional research conducted to examine this area.

What could this mean for potential treatment of Alzheimer’s disease down the road? According to the Tony Wyss-Coray, who runs the lab where the research was conducted, treatments that could target the brain’s vascular system may be more easily accessible as the blood-brain barrier presents a challenge when it comes to getting drugs into the brain.

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Being a pet owner may have cognitive benefits

Donna Cecaci/Unsplash

I’ve written before on this blog about having a keen interest in studies that involve dementia, Alzheimer’s and overall cognitive health, while also maintaining a healthy skepticism. This week a preliminary study about how having a pet could benefit cognitive health made the rounds on social media. Those of us who are pet owners know how much love and joy they can bring to our lives. But it’s also important to understand and be able to manage the challenging moments as they age and develop health issues of their own.

The study found that those who had owned pets for five or more years were able to delay cognitive decline by 1.2 points vs. those in the study who did not have pets over a six-year period. The study analyzed cognitive data of more than 1,300 adults age 50 or over. While researchers were only able to establish an association, not a cause and effect with this study, the findings support prior research in this area.

Pets offer loyal companionship and keep us on a routine. Dog ownership encourages daily walks, and regular exercise has been demonstrated to have cognitive benefits. By just being their unique and adorable selves, pets can offer us moments of joy that help relieve stress and lift our spirits. As a society, we should do everything we can to make sure elders and those with health issues have the support they need to keep their beloved pets with them, whether its at home or in a residential facility.

Pets can also present a host of challenges, from behavioral to health issues. I personally have experienced this and dealt with an extended period of sleep deprivation. Researchers believe our quality of sleep, especially in middle age, has an impact upon our cognitive health and that poor sleep may increase our risk of Alzheimer’s and other dementias later in life.

I cannot imagine my life without my pets, but I also accept the considerable responsibility that I have in maintaining their well-being. If you have elder loved ones with pets, check on them to make sure that there are no care issues that need to be addressed.

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Nutritional options important part of palliative care

I came across an interesting discussion recently about whether Ensure and other nutritional beverages marketed towards older people are really the best option.

The discussion that followed the geriatrician’s perspective included interesting pros and cons. It made me think about my parents’ experience with the beverages. My father had never been a fan of milkshakes or similar beverages, but he seemed to enjoy the Ensure drinks, so I would ship cases of them to the memory care center where he spent the last year of his life. My mother existed on Ensure for the last month or so of her life. I have regrets about that, wishing I had taken time to make her something that she would have enjoyed more.

This is why I’m such a strong believer in expanding inpatient hospice and providing more robust home hospice care. As the sole caregiver for my mother at the end of her life, things like whipping up something delicious for her to eat didn’t cross my mind because I was so busy focusing on the “important” things, like her pain medication, treating her bedsores, etc. While I managed to mainly keep her suffering to a minimum, there was no joy in her final weeks.

Those with dementia may struggle with solid food as they enter the final stages of the disease, so liquid forms of nutrition may become a necessity. Homemade smoothies, puddings and milkshakes may interest those who have grown tired of the commercial products. If you can, consult with a nutrition specialist or dietitian about tasty, safe options for your loved one. Bringing loved ones small moments of joy can also lift the spirits of family caregivers.

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Nursing home evictions: Understanding your rights

As difficult as it can be to find a good nursing home and secure space for your loved one, the challenge doesn’t end there. Dementia caregivers in particular must be aware and be prepared to take action if the nursing home tries to evict your loved one.

So many people are not aware of the amount of nursing home evictions that take place each year in the US and the chaos and stress it causes families. I experienced a form of this when the skilled nursing facility where my father was placed after being discharged by the hospital said it could no longer care for him because they didn’t have staff that could provide dementia care. My father was not able to return home because he could no longer walk and my parents’ condo had stairs. My father was stranded and eventually was placed over an hour-and-a-half away from my parents’ home in the closest facility with a memory care wing.

In some cases, residents are evicted with very little notice and without a legal reason. ‘I Want to Go Home’ published in The Progressive Magazine offers firsthand accounts of how nursing home evictions can throw families into chaos. One way to protect your loved ones is to be aware of the possibility of eviction and an action plan to implement if it occurs.

I hope this is an issue your loved one never has to face but Justice in Aging offers good resources to learn more.

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Reflecting upon 10 years since my father’s death

It has been 10 years since my father’s death. So much has happened in the past decade, but I’ll never forget where I was when my mother called with the worst news of my life, in the middle of the newsroom at the Atlanta Journal-Constitution. I had been waiting for that awful call for quite some time, and some part of me wished for it, because it pained me so much to see my father suffering in the late stages of dementia. But of course there was no immediate sense of relief upon my father’s passing, just sadness and regret.

I do still carry feelings of regret and guilt to this very day, and probably always will. I discuss this at length in The Reluctant Caregiver, and urge others not to judge themselves too harshly. In that spirit, I am taking a look back on what my father inspired me to do over the last decade.

  • I began this blog, The Memories Project. What began as a way to document memories of my father and process my grief has become the foundation of my dementia and caregiver advocacy platform. I have also met so many fellow caregivers through the blog and am grateful for their wisdom and their support.
  • I wrote a book, which was a life goal of mine. My collection of personal essays on family caregiving, The Reluctant Caregiver, won a gold medal at the IPPY Awards. An essay from that collection won the Rick Bragg Prize for Nonfiction from the Atlanta Writers Club. A story I wrote about my father, “French Toast,” was included in the Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias collection. I know my dad, a lifelong lover of books, would be proud.
  • I finally made it to Ireland and visited my father’s hometown of Belfast, Northern Ireland. This was at the top of my bucket list and has been one of the best experiences of my life.
  • The privilege of sharing my father’s story through a variety of outlets, including NPR, AlzAuthors, Caring Across Generations and the Aging in America conference.

The decade since my father’s death has been the most difficult of my life, but also the most rewarding. I hope that you can take time this holiday season to recognize and reflect upon the highs amidst the lows of your own caregiving journey. Give yourself the grace that you deserve.

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New research finds potential cause of Alzheimer’s disease

A recent study from researchers at UC Riverside offers intriguing data that could lead to a better understanding of what causes Alzheimer’s disease.

Plaques and tangles in the brain have been a focus of Alzheimer’s researchers and some believe ridding the brain of the buildup will help in treating the disease. Approximately 20 percent of people have plaques detected in the brain, but do not develop dementia, prompting researchers to do a deeper investigation of the tau protein. Their results suggest that a specific presentation of the protein was linked to the development of dementia. The body has an automatic mechanism called autophagy to clear defective proteins from cells, but that process slows as we age, especially for those over the age of 65.

The researchers described the defective tau protein as “trying to put a right-handed glove on your left hand.”

If their preliminary research proves to be correct, there are drugs being tested to improve the autophagy process, which could potentially be used to treat Alzheimer’s disease.

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How your caregiving experience can be a gift to others

My father and Aunt Peggy on her wedding day, 1956.

I received a letter from my Uncle Jim this week, updating me on how my Aunt Peggy is doing. She is my father’s youngest sister and has dementia. My father’s side of the family has been decimated by the disease and Peggy has been living with the disease for years. Jim has been an amazing caregiver to her and patient in navigating the choppy waves the disease presents. She is doing as well as can be expected, and is able to take advantage of resources offered by Australia’s stellar healthcare system.

A few years ago, I sent Jim a copy of Chicken Soup for the Soul: Living with Alzheimer’s and other Dementias. A story of mine about my father, French Toast, is included in the collection, but I also thought Jim might appreciate the wealth of information that was shared by the dozens of dementia caregivers who contributed to the collection. In his recent letter, he mentioned the book and the information I shared about my father’s struggles with swallowing in the end stage of the disease. He thanked me for sharing the information and how it had been helpful while caring for Peggy.

Caregiving can feel very isolating. When caring for someone with dementia, that isolation can feel even greater, as friends and sometimes even other family members maintain a distance, not sure how to help or struggling to accept the diagnosis. But in those moments you might be learning something that, when shared with others, can make their caregiving lives easier.

Don’t be afraid to share the lessons you have learned on your caregiving journey. Knowledge is a precious gift and what we learn from fellow caregivers can be more meaningful than what we learn in books.

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