Tag Archives: dementia

August 9, 2025 · 3:12 pm

Diving into the Caregiving in the US 2025 report

The National Alliance of Caregiving released a new report, Caregiving in the US, which offers insights on the latest trends in caregiving. This comprehensive 140-page report provides data on America’s family caregivers, including insights on who is providing care and what type of care, the financial impact and the ongoing challenges caregivers encounter when trying to access support and resources. In addition, the report takes a look at how caregiving affects a person’s emotional, physical, and mental health.

Key findings:

  • Approximately 1 in 4 American adults is a family caregiver.
  • The average age of a family caregiver is 51, which happens to be my current age. My parents were older when they had me, therefore I began the family caregiver journey sooner than some of my peers.
  • Women make up the majority (61 percent) of family caregivers.
  • Twenty percent of caregivers live in rural areas, which can complicate access to care resources and support.
  • 40 percent of caregivers live with their care recipient.
  • Family caregivers spend an average of 27 hours per week providing care; nearly a quarter provide 40 or more hours per week.
  • 7 in 10 caregivers also work, which can add to a caregiver’s daily stress of trying to juggle two demanding positions. For many caregivers, not working outside of caregiving is not an option, with almost half reporting at least one negative financial impact. Finding affordable care support services has also become more expensive.
  • It should come as no surprise that caregivers’ own health is negatively impacted. According to the report, 1 in 5 family caregivers rate their health as fair or poor and 64 percent experienced emotional strain.
  • Caregivers are performing a wide range of duties: two-thirds help with at least one activity of daily living (ADL) like bathing, dressing, toileting, feeding, and mobility assistance. 8 in 10 caregivers are handling multiple instrumental activities of daily living (IADLs)—such as shopping, managing finances, preparing meals, and arranging transportation.
  • An alarming statistic: more caregivers are performing complex medical or nursing tasks such as managing catheters, giving injections, or monitoring vital signs. While more than half (55 percent) perform complex tasks, only 22 percent received training. Learning medical tasks on the fly is common but definitely stressful. I wrote about this aspect of caregiving in The Reluctant Caregiver.

One statistic that stuck out to me due to my advocacy work in respite care is that few caregivers (just 13 percent) are utilizing respite resources, even though nearly 40 percent recognize that respite services would be helpful. This reluctance to use respite care and the barriers that prevent caregivers from seeking respite is one of the main reasons I started Respite Care Share. As the study points out, the low usage of respite care is not just due to lack of accessibility; for some caregivers, there are cultural connotations to accepting help that must be addressed in order to reduce the risk of caregiver burnout.

How caregivers want to be supported

According to the caregivers surveyed in the report, tax credits and direct payments were nearly equally cited as preferred sources of financial support. Paid leave also received support from a majority of caregivers.

In addition to financial support, caregivers requested services like respite care, emotional support, and health care training. As pointed out above, it’s not enough to just offer these services but find ways to break down barriers to make sure the services are truly accessible and designed to meet the diverse needs of communities throughout the country.

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August 3, 2025 · 12:41 pm

Alzheimer’s Association-U.S. Pointer trial finds lifestyle interventions can improve cognitive health in older adults

The Alzheimer’s Association recently released the results of a trial they funded, called the U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (U.S. Pointer) which found that “Positive, everyday actions can make a difference in brain health, and when combined into a program that targets multiple factors like physical activity, improving nutrition, cognitive and social challenge and health monitoring, we now know it can have an even more powerful impact.”

Following a similar study that was conducted about a decade ago in Finland called the FINGER study, the Alzheimer’s Association wanted to see if that study’s findings of lifestyle changes positively impacting cognitive health could be replicated for the U.S. population. To conduct the study, participants aged 60-79 who did not exercise regularly and who were at increased risk for cognitive decline were recruited and followed for two years. Participants were located near one of the study’s site locations: Chicago, Houston, Providence, Sacramento, and Winston-Salem.

The participants were placed into one of two groups: structured lifestyle intervention and self-guided lifestyle intervention. The structured group attended nearly 40 meetings over a 2-year period while receiving a prescribed program for physical activity, diet, and cognitive training with goal setting and regular reviews and support. The self-guided group six peer team meetings and were encouraged to implement lifestyle changes that best suited them. General support was provided by staff, but no direct goal-setting or coaching was provided.

What surprised me the most about the study results is that both groups demonstrated an improvement in cognition. This is a key finding because it shows that such programs could offer benefits for those in rural, isolated areas where ongoing support services are limited or non-existent. Those in the structured program did exhibit further cognitive health benefits than the self-guided group.

Another positive finding in the study was that the benefits of the lifestyle intervention were not limited by sex, ethnicity, genetic risk or heart health status. I’ve seen studies where benefits may be more apparent in men vs. women, for example, so this is a key takeaway.

So what is the “recipe” of lifestyle interventions that was used for the study? The infographic at the top of the post captures the components:

  • Exercise: 30-35 minutes of moderate-to-intense aerobic activity four times a week, plus strength and flexibility exercises twice a week. (Strength and flexibility exercises are also critical in fall prevention for elders.)
  • Cognitive exercise: The study used a computer-based brain training program which participants used three times a week in 30-minute sessions. Regular engagement in intellectually challenging and social activities was encouraged. I’m not sure which brain training program was used, but I’m enrolled in an ongoing study which used a computer-based program to assess changes in cognitive performance. It involves activities like memory retention by recalling patterns.
  • Nutrition: The MIND diet was prescribed, which emphasizes dark leafy greens, berries, nuts, whole grains, olive oil and fish, and limits sugar and unhealthy fats.
  • Health monitoring: Regular vital check-ins on blood pressure, weight, and lab work.

Engaging in regular exercise, performing mentally stimulating activities and eating healthy is a common-sense approach for overall good health. One important follow-up to the study will be to see if people can stick with the lifestyle changes once they are no longer part of the study’s structured program. Another analysis that I’d like to see is how many of the study participants go on to form Alzheimer’s or another form of dementia. Do the lifestyle changes prolong cognitive health thereby delaying a dementia diagnosis or do they offer further protective effects? An extension of the study has been funded and may answer some of these key questions.

Infographic image courtesy of the Alzheimer’s Association.

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July 14, 2025 · 9:00 am

Analysis: Dementia caregivers more likely to report risk factors that increase their own risk for dementia

A new analysis conducted in part by the Alzheimer’s Association found that dementia caregivers are much more likely to report at least one modifiable risk factor that increases their own risk of developing dementia. According to the analysis conducted by two public health centers in the US, nearly 60% of dementia caregivers report having at least one modifiable risk factor and nearly 25% report having multiple risk factors.

The analysis was based on data collected from 47 states and focused on six modifiable risk factors for cognitive decline among individuals caring for someone with dementia: diabetes, obesity, physical inactivity, smoking, sleep, and hypertension.

Compared with the overall population, dementia caregivers were more likely to report five of the six risk factors examined. The differences were most significant for smoking (30% more likely), hypertension (27% more likely), and poor sleep (21% more likely). Dementia caregivers were also 12% more likely to have diabetes and 8% more likely to be obese.

Gender, age, and race played a role, according to the analysis findings. Male dementia caregivers were about 15% more likely to have at least one risk factor versus female dementia caregivers.

American Indian/Alaska Native dementia caregivers were the most vulnerable population according to the analysis, reporting at least one risk factor (77 percent). Black caregivers were close behind at 72 percent, followed by Hispanic (59 percent), White (58 percent) and Asian American (28 percent) caregivers.

Dementia caregivers under 45 were about 13% more likely to have at least one risk factor
compared to all adults under 45 and 40% more likely to have multiple risk factors.

“This analysis should be a wake-up call for public health to develop strategies that address caregiver health to help this at-risk population,” said Matthew Baumgart, senior vice president, Health Policy, Alzheimer’s Association.

According to the researchers, more than a quarter of dementia caregivers delay or do not do
things they should to maintain their health. My own mother delayed going to the doctor for her GI symptoms, and six months after my father’s death from dementia complications, she was diagnosed with colon cancer.

The goal of sharing such sobering statistics is that the health of dementia caregivers is being neglected by the healthcare system, and earlier interventions and greater resources are needed to turn around this trend. No one should see their health suffer because they are caring for a loved one.

Image generated by ChatGPT.

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June 28, 2025 · 3:37 pm

Free yourself from the burden of being a superhuman caregiver

When Dementia Progresses

Dr. Elaine Eshbaugh offers wise words and compassionate insights once again on her blog, When Dementia Knocks. There are many ways family members can react to a loved one’s dementia diagnosis. Some people will embrace the fuzzy blinders of denial, while others will go into overdrive in an attempt to protect their loved one from cognitive decline for as long as possible. While the latter is noble to a certain extent, it can place an intense and unrealistic burden on the caregiver, as Eshbaugh points out in her blog post. Alzheimer’s is a progressive disease; while there may be some steps you can take to stave off decline for awhile, they won’t work in every person and eventually, the disease progresses. When a loved one declines after a period of relative stability, it’s not the fault of the caregiver. It is simply the nature of the terrible disease.

Be kind, especially to yourself and your role as a dementia caregiver.

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June 22, 2025 · 8:00 am

Stay safe, keep cool this summer

Summer has just started and this week it’s supposed to be in the high 90s here in Atlanta. I’ve lived here since 1997, and know that hot, long, and humid summers are to be expected. But as one gets older, one needs to take extra precautions against the heat. This applies to our pets as well.

Each year, I write at least one blog post dedicated to summer safety tips. It’s heartbreaking to think that in our modern age, people die because of the heat. For dementia caregivers, extra thought should be given to not only protecting loved ones from the heat, but also finding indoor activities that are stimulating and finding ways to still spend a bit of time outdoors.

The CDC has a simple caregiver checklist for heat safety. Here are some key factors to consider:

Hydration: I’m always blown away by the fact that some people don’t drink water. I consistently drink water throughout the day and would feel unwell if I didn’t. Older people often don’t drink enough fluids, and dementia can complicate matters further. To make water less boring, there are flavored waters and sparkling waters. Unsweetened varieties are available for those who need to keep their blood sugars in check. Another fun solution are Jelly Drops. Hydrating foods like watermelon count as well, so consider that as a tasty option.

Cooling options in the home: In certain parts of the country, such as where I live in Atlanta and where I used to live in Texas, air conditioning is considered a must-have. That doesn’t mean everyone has AC, or can afford to use it. I hate to hear about cases where older people die from the heat because they were afraid to turn on their air conditioner due to the cost. It’s no joke that AC is expensive to run; there are government programs to help offset some of the costs. Cooling stations exist in some cities during extreme heat waves. Check on your elder loved ones frequently during heat waves and make sure they are living in a situation that is bearable, especially if they are in fragile health.

Adapting favorite activities: If you live in an area that experiences extreme heat, those long and hot sunny days can begin to feel like a prison. This is especially true for loved ones with dementia, who may become restless if their outdoor activities are limited. There are a few things you can do to adapt. One thing I do with my senior dog is take walks early in the morning, where it might be humid but at least the sun isn’t broiling us. There aren’t as many shopping malls as there used to be, but if you still have one in your area, walking around the air conditioned mall can be a nice indoor activity on a hot day. My parents used to do this for exercise. Some recreation facilities have indoor walking tracks; swimming pools could be another option to cool off. Instead of hitting the golf course on a dangerously hot day, consider an indoor golf simulator facility like Topgolf. Museums offer a stimulating activity in a cool environment.

Caregivers should learn the signs of heat-related health issues so they can spot them quickly in those they care for and seek timely treatment.

I admit I dread the summers, because of the oppressive heat and the mosquitoes. But what I do enjoy about summer is the extended daylight and iced coffee. If you are not a fan of summer, try to find one thing to enjoy: maybe it’s an ice cream cone or a dip in the swimming pool. Hopefully you can share some of these simple joys with your elder loved ones you care for, and make happy memories this summer season.

Illustration created by ChatGPT.

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June 15, 2025 · 7:49 am

Happy Father’s Day

Thinking of Dad today and what it would be like to take a long walk in the park with him and discuss all of the troubles happening in the world right now.

Hope you get to spend quality time on this Father’s Day with your fathers or those who serve as father figures in your life.

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June 6, 2025 · 9:00 am

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.

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May 17, 2025 · 6:45 pm

Powerful account of living with dementia

Diary – What is it like to live with dementia.

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

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April 28, 2025 · 8:00 am

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!

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April 21, 2025 · 8:00 am

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.

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