Tag Archives: caregiver

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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Birthday reflections: The gift and burden of self-care

Birthday breakfast treats!

Today is my birthday. After last year’s leap of faith, I’m keeping it simple this year with a staycation. An at-home vacation gives one opportunities to indulge in self-care.

I’m a believer in self-care; my project Respite Care Share is all about helping caregivers take breaks from caregiving duties. (I’m wrapping up a refresh of that project, more to come soon.) There are numerous studies about caregiver burnout and the dangers it presents to caregivers and care recipients. Taking regular caregiving breaks is key to recharging and maintaining an identity outside of caregiving.

But reality check: self-care doesn’t happen by waving a magic wand. I wish it did! For solo caregivers and single folks, self-care is yet another task one has to perform on top of all of the other chores and duties necessary for a functional life. And at some point, caring for yourself can feel like a burden.

If you find yourself struggling with self-care, try connecting with resources that are meaningful and authentic. I listened to an episode of the Happy Healthy Caregiver podcast recently with two of my favorite people in the metro Atlanta caregiving community: Elizabeth Miller and Hope Cross. This was a down-to-earth discussion about the challenges of caregiving and taking care of oneself. You may remember I’ve written about Hope before, as she cared for her husband, Steve Dezember, who had ALS. She is now a licensed counselor with a practice focused on family caregivers.

If you are looking for ways to incorporate more self-care into your life (most of us need to!) the Happy Healthy Caregiver website is a good resource. From my own experience with Respite Care Share, it’s best to start small, with easy to manage and access respite activities, even if it’s just getting away for an hour and enjoying your favorite beverage at a local cafe or taking a walk in the park. Respite can be designed to fit the caregiver’s needs and caregiving situation. For some, it might mean a weekend away; for others an afternoon to recharge. What’s important about respite and self-care is not so much what you do, but how often you engage in caring for yourself.

Looking at old family photos is a favorite respite of mine. If you haven’t tried My Heritage’s new AI feature, Live Memory, consider giving it a spin. You get to try it for free. It brings motion to images. It added an extra sweet dimension to this beloved photo with my father.

Here’s hoping you can find a way to make self-care the gift it should be and not a burden in your life.

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Managing stress as a dementia caregiver

April is National Stress Awareness Month so it’s a good time to discuss healthy ways caregivers of those with dementia and Alzheimer’s can manage stress levels.

The first thing I recommend is to set realistic expectations. The dementia care journey is unique and unpredictable. The more flexible and adaptable you are, the more resilient you will be when facing those tough days when everything seems to go wrong.

Stress can manifest itself in a wide variety of mental and physical symptoms. While people may recognize common symptoms like irritability, anxiety, headaches, and digestive issues, stress can also impair decision-making skills. The longer someone endures a stressful situation, the more difficult it may be to recognize the signs of stress, as the situation begins to feel like the new normal. It’s important to recognize how your body reacts to stressful situations so you can find a stress-relieving method that will work best for you.

There are no shortage of stress reduction techniques that dementia caregivers may find helpful. For me, walks in nature and listening to music were my go-to methods for relieving stress. Anything that helped me reset my brain and my emotional state was effective when I was facing a stressful caregiving situation.

Don’t overlook the ways stress may impact your loved one with dementia. While they may not be able to express their feelings of stress clearly anymore, there are signs that caregivers should aware of as well as the triggers that may cause stress in their loved ones. A caregiver’s mood and stress level may impact a person with dementia.

Being a dementia caregiver can be a lonely and isolating experience. Finding practical ways to relieve your stress, creative outlets to express your feelings, and connecting with others going through a similar situation can be beneficial.

Speaking of creative outlets, I’d like to invite you to a poetry reading taking place at the end of April. Poetry for the Dementia Journey is being hosted by AlzAuthors on April 29 at 2 p.m. ET. The live poetry reading will feature 20 poets, including myself. You can RSVP via this form. I hope you can join us.

Image by ChatGPT.

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Give the gift of books

When I was cleaning out my parents’ condo, I came across so many books! I’d donated many books to the local library over the years, so I couldn’t believe how many books were still left when I did the final cleanout. Most of the books belonged to my father, who had a deep interest in WWII history, as he lived through the bombing of his hometown of Belfast when he was a child.

Reading was my father’s passion. He was a voracious reader and always had a book or two on his nightstand or coffee table. He sparked my love of reading, and some of my happiest childhood memories are Saturday afternoons spent with Dad in the library. I still enjoy physical books, but I do most of my reading now via e-books. It’s just more convenient and I’m at a point in life where I want to downsize, beginning with my possessions.

With that being said, books can make wonderful gifts this time of year so I want to let you know about Smashwords 2024 End of Year Sale. I’m a participating author in this sales event so you can get e-book versions of The Reluctant Caregiver and CBD for Caregivers for half off from Dec. 12 through Jan. 1, 2025. Use the code SEW50 at checkout.

Digital books can make ideal gifts for those who live far away or for last-minute gift ideas. If you are gifting a book to a caregiver, you may wonder, do caregivers have time to read? It really depends upon the individual circumstance, but reading can be a source of respite, a way to whisk away to another world, even if one only has time to read a page or chapter at a time. A great resource for books that are curated by and for dementia caregivers can be found at AlzAuthors. Their collection includes everything from memoir to self-help to children’s books.

Speaking of children’s books, my tale about my senior rescue dog, Slow Dog, is also still available.

Murphy posing with his book.

Hope you get to enjoy the gift of a good book this holiday season.

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Thinking of Mom on her birthday

Mom would have been 87 today. While Mom and I were opposites in many ways, I did gain an appreciation of music from her. She loved her Martin guitar and it survived several moves with her. She taught me to play a bit when I was a kid; it kept me occupied over those long, hot summers in California. After she died, the guitar was one of the mementos that I cherished the most, so it’s now in my home. I’ve attempted to play it again sporadically, and hope one day I can dedicate enough time to be able to play casually again.

I also inherited an appreciation of a wide range of music from my mother. She loved listening to everything from Mozart and Beethoven to Johnny Cash and Willie Nelson. She even tried to appreciate the music I loved growing up, and the music video craze of the 1980s. I think Cyndi Lauper was probably her favorite, because she was so fun and colorful.

Mom would be proud knowing I was still sharing our family caregiving story with others. You can listen to my appearance on the Caregiver SOS podcast on Spotify or your preferred podcast hosting service. I’ll write more about the appearance in my next post.

A reminder: I’m participating in the Smashwords Summer/Winter sale. Get the e-book version of my award-wining collection of personal essays, The Reluctant Caregiver, for half-off (just 99 cents!) during the entire month of July. Enter the code SSW50 at checkout.

Check out my summer book recommendations for caregivers for even more books to help you on your caregiving journey.

As an Amazon Associate I earn from qualifying purchases.

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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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Sharing our stories as family caregivers

When we are actively caregiving, it can sometimes feel as no one cares or no one understands what we are going through. As a former family caregiver, I now dedicate my time to not only telling my caregiving story, but learning about other caregiver’s journeys. This week I was blessed with two opportunities to share my story.

I’m a proud member of AlzAuthors, and this week I am the featured guest on the group’s excellent podcast series, Untangling Alzheimer’s & Dementia. If you are looking for a support as a caregiver, I encourage you to check out the podcast as well as the bookstore which offers books about dementia covering a wide range of topics and genres. I’m honored to have my book, The Reluctant Caregiver, included in this collection.

I also did an interview that is featured on Bella’s Blog, part of the Joe & Bella’s retail website. The company describes itself as “a one-stop shopping site for older adults and those who care for them.” The store sells everything from adaptive clothing to safety and mobility items and bathing supplies, all thoughtfully curated by aging and caregiving experts. The first of my two-part interview was posted this week. I discuss the details surrounding my father’s dementia journey and how it impacted the entire family. Use the discount code “Joy” to get 10% off your first purchase at Joe & Bella.

It’s important that family caregivers hear stories from others who have gone through a similar situation. It helps one feel less isolated and can help empower those who are struggling. I’m always grateful to share my caregiving story, but the most rewarding part for me is connecting with others through their own caregiving experiences. We have so much to learn from each other.

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Amazon Alexa now has Care Hub

I’m always interested in new technologies that can help elders and their caregivers. So when I received an email about Amazon Alexa’s new Care Hub, I took some time to look at its features.

Smart home devices such as virtual assistants have become popular over the last several years, and their ease of use means a wide range of people, from children to older people, can adopt them without much of a learning curve. The privacy concerns are real and should not be ignored, however many find that these devices are helpful in their daily lives. I have one of the older Amazon Echo devices and I use it to automate the house lights and to use as a timer when I’m cooking.

The new Care Hub requires the elder user to have an Amazon Echo device in their home and for the caregiver to at least have the Amazon Alexa app on their phone. Echo devices start around $50, though you can get older generations at a discounted rate, especially during Black Friday or other deal days. For example, a deal right now offers an Echo Dot for $29.99.

A customized activity feed is linked with alerts so that you can monitor when your loved one first interacts with the device each day. If activity is delayed, then you can check up on them, either through the Care Hub or by phone. Alexa will also notify caregivers if their loved one asks for help, allowing the caregiver to check on the person and call emergency services if necessary.

There are a lot of things that Alexa can do to help elders, from offering pill reminders to adding items to the shopping list and making hands-free calls without having to remember numbers.

I haven’t had the chance to use Amazon’s Care Hub because I’m not currently caregiving for anyone, but would love to hear feedback from anyone who has had the chance to try it.

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Keep your elder loved ones safe this summer

summer sun

xusenru/Pixabay

Summer is here, and while outdoor activities remain in flux due to the coronavirus pandemic, now is a good time to make sure you have your summer safety plan in place.

Every year, several hundred people die from extreme heat, according to the CDC, and the majority of victims are older. Increased heat sensitivity and risks associated with chronic health conditions and prescription medications make older adults more prone to heat-related issues.

Another issue is the lack of air conditioning. My parents’ condo did not have air conditioning, and while summers in their mountain community were generally mild, there were heat waves that would send temperatures soaring into the high 80s and low 90s. After they had passed, I spent a week or so there during one of those heat waves and even with a new fan that I bought, it was very uncomfortable. But what may be uncomfortable for someone younger can be dangerous or even deadly for those over 65 or in poor health.

Even more heartbreaking, some older people on a fixed budget fear the high utility bills associated with running an air conditioner, so even though they have one, they don’t use it.

Here are some things to consider as a caregiver when preparing your elder loved ones for the summer heat:

  • What are their cooling options at home? Are they adequate? Keep in mind that with coronavirus restrictions, cooling stations that some depend upon in their community may be closed. Have an alternative plan if it becomes too hot for your loved one to stay in their home.
  • Exercise is still important. Try to arrange walks or other outdoor activities in the early morning or evening hours, when it’s not quite as hot. Keep outdoor activities brief and make sure to bring water so your loved one stays hydrated. Focus on indoor activities like yoga or dancing to keep older adults active.
  • Provide shade: If possible, provide a shady spot for your loved one to spend time outdoors at home. Make sure elders wear breathable, light-colored clothing and wear a hat when outdoors.
  • Hydration is key: I found it was tough to get my parents to drink water. It is crucial that older people drink enough water, especially during the summer. Dehydration can occur more quickly than you think and have serious health consequences. Consider adding a lime or lemon slice to sparkling or still water to make it more interesting, or make a pitcher of unsweetened herbal iced tea to encourage extra fluid consumption.

 

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Caregiver shortage expected to grow, must address issue now

 

Hope everyone had a good holiday and that your new year is off to a good start.

The fact that there is a caregiver shortage is not new; however  a Quartz article posted this week has put the issue back on the national radar. The article cites the slowing population growth, along with increased longevity and a decrease in immigration among the issues that will potentially trigger a caregiving crisis. By 2030, that shortage may grow to more than 100,000 caregivers for the elderly, according to Quartz.

Here are some ways we could address this major healthcare issue:

  • Pay caregivers a livable wage: In order to recruit new generations into a caregiving career, we’re going to have to revamp the woefully inadequate pay scale. Professional caregivers deserve to have decent pay, benefits, and access to training and educational opportunities to grow in their fields. Caregiving should no longer be a job of last resort; it should be a career choice one takes pride in.
  • Immigration policies: We need a fair immigration policy that offers those interested in becoming U.S. citizens an opportunity for a stable career in a field with severe shortages. Too often, immigrants who become caregivers, especially those with questionable legal status, are taken advantage of and paid below minimum wage without benefits.
  • Offer incentives: Just like with geriatric or rural medicine, caregiving is not a “sexy” career choice. Certainly it can be rewarding, but in order to fill the large care gap we may need to get innovative. I’m a fan of the Care Corps concept, and a student loan forgiveness program in exchange for serving as a caregiver could attract candidates.
  • Offer better support for family caregivers: Realistically, the bulk of caregiving duties will likely continue to fall on family members. We need to support them better, by employers offering flexible work schedules and the government embracing universal family care. A tax credit would help some with the financial hit family caregivers suffer.

There is no easy fix, but we definitely need to keep pushing this topic into the general conversation and advocate for common-sense actions and programs to alleviate the caregiving shortage and burden on family members.

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