Tag Archives: Alzheimer’s

New documentary highlights the challenges and triumphs of being a family caregiver in the US

There’s a new documentary airing on PBS called, Caregiving. Actor Bradley Cooper served as an executive producer and at the beginning of the film, he discusses the emotional impact caring for his father had on him.

The bulk of the film focuses on average Americans who are faced with a healthcare crisis in their family and how they attempt to navigate America’s broken healthcare system to access essential services. When that fails, caregivers are forced to take on the burden all on their own. I definitely could relate to many of the challenges these caregivers faced, from job loss to the extra stress of being a sole care provider. I also like that the film showcases stories of care recipients and caregivers who are a variety of ages. Caregiving is not just for the young and the old; any of us can be faced with an unexpected health issue that we are not prepared for and will upend our lives.

While the stories shared in the documentary are sobering, there are moments of triumph and a historic overview of care in America, and how advocates over the decades have made a real difference in how care services have evolved. There’s no question that more resources and support are needed, especially as we grapple with a rapidly aging America. There are some positive developments at the state level, with funding programs for paid leave being approved by voters but nationally, even though Americans in polls claim to support additional care funding, they often don’t vote in their best interest.

Politicians claim they can’t stomach the cost of programs like paid family leave, yet studies (and common sense) shows that the longer you can support an elder aging in place at home, the more reasonable the cost compared to having Medicaid pay the expense of a nursing home. Meanwhile, family caregivers provide billions of dollars in free labor each year, to fill the gaps the government refuses to cover.

Caring Across Generations is featured prominently in the Caregiving documentary, which I’m glad to see, as I’ve participated in events with them in the past. I appreciate their practical yet compassionate approach to caregiving issues, and their focus on being inclusive, as caregiving is something that touches all of our lives at some point.

I hope you get a chance to watch the documentary. I’d love to hear your thoughts.

Leave a comment

Filed under Awareness & Activism

Powerful account of living with dementia

Such a moving an insightful post, thank you Gail for sharing your lived experience with dementia.

Leave a comment

Filed under Guest posts

New documentary on aging in America highlights continued challenges, opportunities

There’s a new documentary about aging, Aging in America: Survive or Thrive, that is airing on PBS for the month of May, which is Older Americans Month. The documentary marks the 50th anniversary of the publication of the Pulitzer-prize winning book “Why Survive? Being Old in America” by Dr. Robert Butler.

While the number of Americans over the age of 65 has more than doubled during the last five decades, in part due to medical breakthroughs, the financial stability of older Americans continues to erode. The documentary notes that older people are the fastest growing group of homeless people in America. Older homeless people may find themselves in that situation for the first time in their lives, after a job loss or medical emergency. The film highlights one such case in which a woman, who was a nurse, ended up living in a moving van for almost a year after being diagnosed with cancer and spending her life savings on treatment.

There’s also a touching segment about a wife caring for her husband with Alzheimer’s in Wyoming, and the challenges of dementia care in an isolated rural environment with limited medical services.

The documentary highlights the organizations that are doing commendable work in addressing the needs of the older population in their communities. From providing meals to companionship and aging in place assistance, these organizations provide critical services to older Americans.

America’s preoccupation with youth hasn’t changed much in the 50 years since Dr. Butler noted that bias in his book. The field of geriatrics continues to struggle to attract new doctors. We don’t have nearly enough care workers to tend to our rapidly expanding older population.

Filmmaker Neil Steinberg said in a Next Avenue interview that he wants to encourage people to “rethink aging” after watching the documentary.

“We need to give people the opportunity to live their later years in dignity,” Steinberg said.

Illustration created via ChatGPT.

Leave a comment

Filed under Awareness & Activism

Join AlzAuthors for a poetry reading

I hope you can join AlzAuthors for Poetry for the Dementia Journey, a moving and inspirational poetry reading on Tues. April 29 at 2 p.m. EDT. I’m honored to be one of the participating poets. I’ll be reading a poem inspired by my father’s experience with dementia. The event will be held virtually via Zoom.

While I’ll always consider the essay format to be most suitable for my writing style, I’ve always had a love of poetry. There’s something unique and impactful that comes from writing poetry vs. long-form writing. Distilling emotions and events down to their essence can help one see things in a different light. With poetry, I can’t hide my feelings behind paragraphs of text; I’m motivated to release the raw feelings, which is so cathartic when it comes to the caregiving experience.

If writing poetry feels intimidating, try writing a prose poem. I was thrilled to have Her Lists, a poem about my mother’s colorful and wild shopping lists, included in The Prose Poem journal in 2024. Though I’d written about the same subject that I included in my award-winning essay collection, The Reluctant Caregiver, the prose poem format allowed me the freedom to play with language and rhythm.

AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. The wonderful organization is celebrating 10 years, which is hard for me to believe. I’m amazed at its growth and what it has done for the Alzheimer’s community.

If you are unable to attend live, the poetry reading will be recorded and shared on the AlzAuthor’s YouTube channel and podcast. There’s also a free guide that will provide you with links to poetry books written by members of the AlzAuthors community. In honor of National Poetry Month, you can purchase a copy of Poetry for the Dementia Journey: An AlzAuthors Anthology at a deep discount.

Hope to see you at the poetry reading!

Leave a comment

Filed under Awareness & Activism

Tips on starting a dementia support group

As government funding vanishes for community-based health programs, it’s becoming increasingly clear that caregivers will need to build their own support networks. If you are considering starting a support group in your community, there are plenty of helpful resources online to help guide you to success.

Today’s Caregiver offers an excellent resource about starting a caregiver support group. The article does a good job addressing the key questions and tasks one must consider, from meeting location to group leader requirements and suggestions on how to set up the first meeting.

I’ve mostly attended online groups but I appreciate the benefits of in-person meetings. There is something special about sharing physical space with others that is difficult to replicate online. But Zoom meetings can offer critical connections to those who might not otherwise be able to attend support groups, such as those in rural locations and those who don’t have transportation options. In this day and age, both options are important to have available to support as many caregivers and care recipients as possible.

There are some unique considerations when it comes to creating a support group for those with dementia. The Toolkit Project offers a variety of dementia-specific resources to help those interested in creating a support group in their community. The Alzheimer’s Society also has tips for facilitating dementia-friendly discussions, including the use of cards to better understand an individual’s communication needs. Keeping things simple and clear, being flexible when it comes to the unexpected, and remaining respectful and compassionate are key factors to facilitating a dementia care support group.

Speaking of community, AlzAuthors is one of my favorite dementia-focused organizations and it is celebrating its 10th anniversary. Join us for a poetry reading on April 29 at 2 p.m. ET. I’m honored to be one of the participating poets.

Image generated by Google Gemini.

1 Comment

Filed under Awareness & Activism

Spring is an ideal time to increase physical activity

As the weather begins to warm and flowers bloom, it’s a good time of year to consider increasing physical activity. A new study suggests that even a small amount of moderate to vigorous physical activity each week can lower dementia risk by a significant amount. The benefits were also seen for older frail adults.

According to researchers from Johns Hopkins who conducted the study, as little as 35 minutes of activity per week helped to lower dementia risk. Each additional 30 minutes of activity was associated with a 4 percent reduction in dementia risk, according to study findings. The Physical Activity Guidelines for Americans recommends at least 150 minutes of moderate intensity exercise per week, which is an average of 20 minutes per day. While that may seem like reasonable guidelines for those in good to average health, for older frail adults, it may be more of a challenge.

My father’s love of walking didn’t prevent his dementia, but it probably did contribute to him maintaining a healthy weight throughout his life, which has a myriad of benefits.

Walking of course isn’t the only exercise that counts towards physical activity recommendations. In some areas of the US, it’s time to get out in the garden. I’ve found yardwork to be a surprisingly good workout. If springtime pollen allergies are too much for you, doing an indoor spring cleaning can be a rewarding physical activity. For older frail adults, there are chair exercises that can be done to support flexibility and reduce fall risk. Yoga and water aerobics are other gentle forms of exercise that can be modified to safely accommodate a variety of physical limitations.

Hope you can find enjoyable ways to be active while welcoming springtime in your area.

Image by DALL·E via ChatGPT.

Leave a comment

Filed under Awareness & Activism

How using improv skills could help dementia caregivers

If you’ve ever attended an improv comedy show, you know that part of the fun is the unexpected ways the skits unfold. Each show is a bit different, based upon the contributions from the players on stage as well as the audience.

Now think about having a conversation with a person with dementia. It may go in unexpected directions. You have to think on your feet about how to respond. Politeness may go out the window; humor, whether intended or not, may present itself. Sometimes conversations may run off the tracks altogether, or into a darker, angrier place, and you’ll need to deploy distraction and redirection techniques.

As a dementia caregiver, you may not have considered the improvisation skills you’ve been implementing in daily communication, but geriatric professionals have taken notice. Where I live in Atlanta, there’s an organization called Improving Through Improv that has a program dedicated to facilitating communication between those with dementia and their caregivers.

A common improv technique is using “Yes, and …” as a bridge between recognizing what the previous person said and then adding to the conversation. One can either build upon what the previous person said or take the conversation in a different direction. The idea is to keep the communication moving forward in a positive manner. For those with dementia, the simple “yes” affirmation may be meaningful and effective, as they may have to deal with other people who constantly correct their mistakes.

Many family members who care for loved ones with dementia find it difficult to let go of a strict sense of reality; my mother struggled with this when caring for my father. She would always correct my father when he said something that wasn’t true, which only left him more confused. For some caregivers, giving in can feel like they are losing their minds too. By using “Yes, and …” caregivers can acknowledge their loved one’s viewpoint without having to agree and remain empowered to steer the conversation forward.

One of the most difficult aspects of dementia caregiving is accepting the fact that while your loved one may look the same, they may be moving in a different reality. “Meet them where they are,” is one recommendation for dementia caregivers, and deploying improv techniques can help in bridging the gap and building a new way of communicating.

Image by Google Gemini.

Leave a comment

Filed under Awareness & Activism

Deaths of Gene Hackman and wife sad reminder of the risk of a spouse-caregiver dying first

Image of Santa Fe via Pixabay.

The unusual circumstances surrounding the deaths of actor Gene Hackman and his wife serve as a stark reminder of what can happen when a spouse who also is the primary caregiver of a spouse with Alzheimer’s dies before their loved one.

Hackman and his wife, Betsy Arakawa, who at 65 was 30 years his junior, were found deceased in their secluded Santa Fe, New Mexico home on Feb. 26. A pest control worker alerted security for the gated community in which the couple lived after showing up to provide service but not receiving a response, KRQE reported. Upon investigating, the security officer found the bodies and contacted authorities.

Embed from Getty Images

An autopsy revealed that Arakawa died of hantavirus pulmonary syndrome around Feb. 11, KRQE reported. Since my parents retired to New Mexico, I was aware of hantavirus, which is rare, with most cases appearing in the southwestern part of the U.S.

Hackman, 95, died of heart disease with complications of what the medical examiner noted as an “advanced state of Alzheimer’s disease.” He’s believed to have died on Feb. 18, when the last activity on his pacemaker was recorded. That means authorities believe Hackman could have spent up to a week alive after his wife died. We will likely never know the details of those days, and whether Hackman realized his wife was deceased or whether Hackman’s cognitive decline may have prevented him from understanding the dire situation.

In addition to the couple, one of their dogs died, while two were found alive. The deceased dog was found in a crate near Arakawa’s body. Veterinary records show that the dog had undergone a recent medical procedure, which likely was the reason it was confined to the crate, authorities said.

Such a tragic ending is a sobering reminder for those who serve as the sole caregiver for a spouse or other relative with a condition like Alzheimer’s in which the care recipient may not be able to call for help or care for themselves in the case of a medical emergency involving the caregiver. By all accounts from friends of the couple, Arakawa closely managed Hackman’s health. As his Alzheimer’s progressed, he likely became even more dependent upon her guidance.

Some have questioned why Hackman didn’t have a professional caregiver, or even a live-in care provider, as he likely could have afforded such a service. It seems Hackman and his wife enjoyed their privacy, and with Arakawa considerably younger than Hackman, and very capable of managing his care, outside help may have felt intrusive and unnecessary. As those of us who have cared for loved ones know, bringing in external help can be upsetting and disruptive to those with Alzheimer’s, as they thrive on routine and familiarity.

What can caregivers do if they find themselves in a similar situation? Having a plan in place to account for a caregiver’s acute health crisis is vital. Share a document with family that includes key health information, current prescriptions, etc. Technology can help; there are numerous medical alert systems available which can call for help with a click of a button or can sense when someone has fallen and automatically send help. My mother found such medical alert services useful as she lived alone. Having a trusted friend or relative who can serve as a check-in buddy can be helpful. Over the last year or so of my mother’s life, we spoke almost daily, which allowed me to assess her wellbeing in addition to offering social connection.

If you have a loved one that you haven’t heard from in awhile, don’t hesitate to check on them.

Leave a comment

Filed under Awareness & Activism

Why women are at an increased risk of dementia

March is Women’s History Month, so it’s a good time to dive into research regarding women and dementia. We know that women are more likely to develop Alzheimer’s than men, but why?

One commonly cited factor is a simple one: age. Women on average live longer than men, therefore, they have an increased risk of developing conditions like Alzheimer’s, in which advanced age is a top factor. According to the Alzheimer’s Association, about two-thirds of those living with Alzheimer’s in America are women. However, the UK-based Alzheimer’s Society points out that not all studies support this theory.

One interesting data point is that the gender differences are specific to Alzheimer’s risk, and not risk of other forms of dementia, according to Harvard Health Publishing.

There are other factors, both physical and cultural, that may play a role in increased Alzheimer’s risk for women. The hormonal impacts of menstruation, pregnancy, and menopause and dementia risk is being studied, but more research is needed to reach any definitive conclusions. The Alzheimer’s Society discusses the current state of hormone replacement therapy (HRT) and dementia risk. Early research suggested that HRT may increase the risk of dementia, but newer research disputes that, and suggests that HRT may even have a protective effect. STAT also explored the latest studies on hormone therapy and dementia risk for women, with researchers focusing on the timing of hormone treatment. Harvard Health Publishing points to women’s immune systems, which are considered to be stronger than men’s immune systems, and that the robust immune response may deposit more amyloid plaque in the brain.

Genetics likely plays a role too. The Alzheimer’s Society points out that while men and women are both about as likely to have the ApoE4 gene variant, the related dementia risk seems to be greater in women that men. I have the the ApoE4 gene variant. Cases of Alzheimer’s appear on both sides of my family tree, but more of my female relatives were diagnosed. Unfortunately, I don’t know their ApoE4 gene status.

For the current elder population, gender norms of yesteryear may have limited women’s ability to receive higher education and work in more complex jobs, or have careers at all for that matter. Education levels are believed to play a role in reducing the risk of Alzheimer’s.

Moving forward, women need to advocate for more research to better understand the potential for increased Alzheimer’s risk, as well as steps women can take to reduce their risk of this terrible disease.

Looking for caregiving books? It’s Read an Ebook Week and I’m participating in the Smashwords sale. Get my award-winning personal essay collection, The Reluctant Caregiver, for half-off through March 8. Use the code EBW50 at checkout.

Image created by Imagen-3 in Google Gemini.

Leave a comment

Filed under Awareness & Activism

When home can no longer be found

One common behavior in those with Alzheimer’s disease is to ask to “go home.” It seems like the simplest of requests, but caregivers are often stumped because their loved one may make this request when they are already home. That’s because the meaning of “home” can change as the disease progresses.

My father asked to go home almost every time my mother visited him at the memory care center during the last year of his life. But my mother didn’t get the sense that my dad meant home as the condo they had purchased. Home seemed to be a more vague destination. In fact, my dad and his roommate reportedly hatched a plan to escape the memory care center and catch a bus to … somewhere undefined. The memory care center had secured access and the escape plan was quickly forgotten.

The last time I saw my father alive, he also expressed a desire to go home. This time, it was clear that home meant to Belfast, his birthplace, because he mentioned wanting to see his sisters. There is some evidence to suggest that those with dementia hold on to their earliest memories longer than more recent ones.

For caregivers, the “going home” request can be difficult to navigate. This recent article in Self has some good tips and strategies. Once physical discomforts are ruled out, caregivers can implement a variety of strategies to engage with their loved one and help them move on from the “going home” obsession loop. These strategies may need to be adjusted over time; be prepared for a period of trial and error.

Loved ones with dementia who express great distress about their current surroundings may attempt to wander. In these cases, making sure home are adapted to prevent escape attempts is essential. Specialized door locks and high-tech tracker tags can help in these situations.

Losing a sense of home must be frightening, as our homes are often our sanctuaries. Helping loved ones with Alzheimer’s navigate this disturbing yet common behavior takes compassion, patience, and creativity.

Image by DALL-E 3 via ChatGPT.

2 Comments

Filed under Awareness & Activism, Memories