Tag Archives: dementia

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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Dementia wandering can be life-threatening in winter

Parts of the US are already experiencing winter weather. It’s important to ensure that loved ones with dementia don’t wander when the weather turns frigid. Each winter, there are cases of those with dementia who fall victim to the elements after wandering from home or a care facility.

My father was a wanderer. His lifelong love of walking had kept him lean, but his desire to move became a liability as his dementia progressed. Dementia takes a physical toll as well, so as Dad became frailer, he was more prone to injuries from falls. While he still lived at home, my mother had to watch him like a hawk. One time, she attempted to take a brief bath, and Dad slipped away. Mom immediately called me, frantic. It was going to be dark soon, and turning colder. In my father’s case, there was a happy ending. Mom called the police who were responsive and tracked my father down not too far from my parents’ condo community. Crisis averted that time.

My father would wander a few more times while he still lived at home, including one infamous time when my mother was in the dentist’s chair. Once he moved to the memory care unit, he was behind a locked door secured by a code. He still wandered, up and down the halls, and outside in the garden area when weather permitted, but at least he was contained to the facility.

It’s such a helpless feeling when a loved one is lost. I’m grateful for first responders and others who helped locate my father when he wandered off.

There are things caregivers can do proactively to reduce the risk of wandering this winter.

  • Door locks: One of the easiest solutions is to configure your home’s door locks to one in which you lock with a key from the inside. Then keep the key on a chain around your neck or in another inaccessible place from your loved one with dementia. If you prefer a more high-tech solution, you could choose something like a fingerprint lock or one that requires a code. Consider a door chime or bell to signal when one exits the home.
  • Trackers: I bought one of the earliest renditions of GPS-powered tracking tags for my father, but the device was cumbersome to use at the time and didn’t have good reception in the mountain town where my parents lived. I’m happy to say that such devices have come a long way since then. If high-tech solutions aren’t an option, even a simple ID bracelet or necklace can be helpful. For long-distance caregivers, seek devices that allow you to monitor your loved one’s movements from your phone, which can offer some peace of mind.
  • Behavior modification: Track your loved one’s wandering episodes. Do they happen at a certain time of day? Sundowning is a common issue for those with dementia, and the longer period of darkness during the winter can exacerbate the issue. My father struggled with bedtime and sometimes would get up in the middle night, change into day clothes, and sit in his chair in the living room until morning. Consider changing up your schedule and finding enjoyable activities to do together during this time period. Talk to the doctor about medication or other therapies.

If your loved one does wander away, try not to panic. Conduct a quick search of the immediate area, and if there’s no sign of the individual, contact authorities. 911 should be able to direct you to any specific community programs for these situations, if they exist in your area, or like in my father’s case, patrol officers handled the situation. Keep a folder on your phone with a recent photo of your loved one, nearby places they may be prone to going to, a list of medical issues and medications, and the contact information for area hospitals.

Caregiver.com has additional useful tips for caregivers to keep their loved ones with dementia safe and warm this winter.

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Making guests with dementia feel comfortable at Thanksgiving dinner

Thanksgiving was one of my family’s favorite holidays. My father loved the food and my mother enjoyed preparing our small family’s meal. If you are hosting or attending a Thanksgiving dinner with a loved one with dementia, it’s important to consider such an occasion from the perspective of someone with cognitive challenges. By planning ahead, remaining flexible, and adjusting your expectations, you increase the chances of everyone having a good time.

Here are important aspects to consider:

Group setting: How many people will be attending the gathering? Is your loved one with dementia comfortable with large groups or do they become easily overwhelmed? What about children or pets? Some people with dementia light up and become more engaged in the presence of children and pets, others may find their energy overwhelming or irritating.

Sitting at a large table can make it difficult for those with dementia to keep up with multiple conversation streams. One solution could be to have multiple smaller table settings to encourage engagement and reduce distractions.

Dietary needs: Dementia can impact a person’s palate, so don’t be surprised or insulted if old favorites are not greeted with much enthusiasm. If dietary restrictions are a consideration, making a plate instead of self-serve may be the best option. Monitor alcohol intake, especially if your loved one takes medications that may interact with alcohol.

Those in the middle to latter stages of Alzheimer’s and other dementias may begin having problems managing cutlery. Consider cutting up food into bite-sized pieces for ease in eating.

One of the more sensitive and heartbreaking aspects of dementia is when someone who loved to cook loses the ability to safely navigate the kitchen and follow recipes. For those who still want to contribute to the Thanksgiving feast, find kitchen tasks that match their ability level. Remember that it’s about the family spending quality time together even more than the food.

Meal presentation: One thing in common with Thanksgiving dinner spreads is that the table is often loaded with multiple dishes. It can be difficult to know where to start even for someone without dementia! Consider using adaptive dinnerware designed for those with dementia.

If your family is hosting and your loved one is no longer able to cook safely, keep them involved by helping set the table.

Need for quiet time: Be prepared to give your loved one a space where they can decompress if necessary. If you are at someone else’s home, perhaps a guest bedroom or if the weather cooperates, a breath of fresh air on the porch could be ideal. Sometimes, a drive around the block may help re-set one’s mood, and worse case scenario, leaving a gathering early is always an option.

Remain flexible and accept that certain beloved family traditions may need to be revamped. After such a social event, make sure your loved one has plenty of time to rest and recover.

By taking these aspects of holiday meal planning into consideration, loved ones with dementia will continue to feel involved and appreciated. Even those who have diminished verbal skills can soak up the love in the room.

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Which songs will be on your end-of-life playlist?

What songs would you like to listen to as you depart this world. Marie Curie conducted research on this intriguing topic and compiled a list of the most popular songs for those at the end of life, The Guardian reported. Familiar favorites like Frank Sinatra’s “My Way” and “Hey Jude” by the Beatles made the top 10 list, as did a couple of perhaps more surprising selections: “Girls Just Wanna Have Fun” by Cyndi Lauper and “The Best” by Tina Turner. Check out the complete top 10 list and learn more about the study on Marie Curie’s website and listen to the playlist on Spotify.

Music therapy can have a profound and positive impact at the end of life, as well as for those with conditions like Alzheimer’s disease. The Marie Curie study found that playing music had a calming effect for the vast majority of those in end of life care.

Music is a personal passion for many people, whether they play instruments or are devoted fans to particular artists and bands. There is no right or wrong answer when it comes to selecting favorite songs for an end of life playlist. Some may choose soothing music, others may want to rock out to their favorite songs that remind them of happy times in their life. I remember having a brief hospice consultation when my father was in the hospital at the end of his life. Sadly there was no room in the inpatient hospice unit for him, but I remember the counselor asking about Dad’s favorite music. That was easy to answer. Dad’s playlist would have included Bing Crosby, Frank Sinatra, and at least one rendition of “Danny Boy.”

When my mother was dying at home, I played her favorite music. Mom had fairly eclectic tastes, but she was most fond of classic country such as Willie Nelson, Dolly Parton, Kris Kristofferson, and Glen Campbell. But when my mother took her last breath, she departed on an upbeat tune by Trini Lopez, which matched Mom’s personality quite well.

I also have eclectic tastes in music so my playlist would include selections from Eva Cassidy, the McGarrigle Sisters, Gillian Welch, a mix of classic country and 1980s-1990s alternative rock, along with bluegrass and Celtic instrumentals.

What music would you include in your end of life playlist?

Image by Microsoft Copilot.

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A growing number of older women are living with dementia on their own

A recent article in The Washington Post discussed a growing and concerning trend: women who live alone and have dementia. Women tend to live longer than men and have a greater chance of developing dementia, so this trend is not surprising, but raising awareness may help communities better serve this aging in place population who have specialized needs.

As someone who is kinless and divorced, with dementia on both sides of my family tree, I think about this scenario often. For now, I’m focused on maintaining good overall health while I consider for my future living arrangements a planned community that intentionally accounts for the needs of their elder population. Things like providing rides to doctor’s appointments or for grocery shopping and offering lawncare and home repair services can help support an elder in the earlier stages of dementia who is living on their own. Making professional services such as financial and legal advisors is also beneficial. One of the most important tasks is one of the most simple: checking in on neighbors with dementia who are on their own to reduce isolation and as a way to ensure someone who needs a higher level of care receives it.

For long-distance caregivers, one challenge is encouraging your elder loved ones to take advantage of resources in their community. After my father died, my mother was very lonely, yet she shunned the social groups at the community senior center. I felt helpless in trying to aid in this situation. My mother didn’t have dementia, which can create an additional layer of resistance.

Here are resources for those with dementia who live alone:

The Alzheimer’s Association: If you live alone

National Institute on Aging: Tips for Living Alone With Early-Stage Dementia

Alzheimer’s Society: Living alone as a person with dementia

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Can a light and sound show for the brain treat cognitive decline?

An article published by Nature recently caught my eye. Instead of medication, a non-invasive treatment called “gamma frequency stimulation” has shown some promise in curbing further cognitive decline in those in the early stages of Alzheimer’s disease, according to early clinical trial study results.

The method may sound dubious at first but the science behind it is interesting. Researchers have discovered that in addition to amyloid and tau protein accumulation, gamma frequency oscillations in the brain occur at a reduced rate in those with Alzheimer’s. Could gamma stimulation boost frequency, reduce amyloid and tau amounts and preserve or improve cognitive functioning?

Mouse models were promising and so are the initial findings of a randomized controlled trial, which found that the “daily use of 40Hz light and sound devices in patients with probable mild AD revealed preserved brain volume, improved memory, and stabilized sleep circadian rhythms.” A longer 30-month extension of this trial found that “patients showed surprising cognitive stability” even during the COVID-19 pandemic. Other trials both at the academic and industry level have reported similar results.

What does the patient have to do to receive such treatment? One product requires a person to wear a special headset and glasses for an hour each day which produces rhythmic clicking and flashing lights that repeat 40 times a second. Another product comes in the form of a specialized light box. Researchers are attempting to make the light flicker and clicking sounds required for the gamma stimulation treatment more tolerable to users by incorporating music into some devices.

Gamma stimulation is not without health risks, especially for those prone to seizures. More research is needed and those interested should be wary of vendors selling expensive machines to consumers that have not been approved for treatment. I’ll be following developments in this trial as I’m all for effective at-home treatments that don’t require pricey medication that can come with a host of serious side effects.

Illustration by Microsoft Copilot.

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Treasure the ‘grace-filled moments’

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Remembering a former colleague, community activist

Earlier this month, a former colleague of mine, Marcia Killingsworth, died from lung disease. Our paths crossed professionally when we worked for the same newspaper and then we became longtime Facebook friends, where we shared a loving devotion to our cats.

I knew that Marcia had been actively involved in her community of Edison, Georgia, where she moved back to after retiring. An article written after her death highlighted just what a difference her contributions made to the town. Marcia was dogged in her dedication to holding the town’s leaders financially accountable, faithfully attending monthly city council meetings, taking notes and asking critical questions. She followed up on issues until she received answers, and documented everything on social media. This is not glamourous work, but it is necessary. Her actions inspired others to join her. One of those residents said of Marcia: “She was the one who brought Edison to light.”

I love that and hope it will offer inspiration for those of us working to raise awareness of Alzheimer’s and other dementias. Sometimes our work can seem futile and discouraging, but individually and collectively, we are making a difference. Our actions may not make headlines or go viral, but they will be remembered by others.

Illustration by Microsoft Copilot.

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Policies needed to address cognitive decline in the workplace

The Alzheimer’s Association had an interesting blog post recently about the issue of cognitive impairment in the workplace. As the U.S. population ages and older people by financial necessity or personal choice are staying in the workforce longer, we need policies to address this sensitive issue.

While modern workplaces, to be compliant with the Americans with Disabilities Act. have evolved over time to better accommodate workers with a variety of physical disabilities and conditions like autism and dyslexia, it seems like similar considerations for those with dementia are a work in progress.

Because dementia is an umbrella term that includes a variety of diseases from Alzheimer’s to frontotemporal dementia (FTD) each with their own unique set of symptoms and behaviors, creating a comprehensive policy will be difficult. The Alzheimer’s Association includes recommendations in their blog post:

  • Training: Human resources need to be educated on signs of dementia, which can present symptoms that may be mistaken for conditions like substance abuse or depression.
  • Accommodating: From flexible schedules to technology enhancements, employers should consider how to assist workers with dementia so they can remain productive and engaged.
  • Support: There will come a time when a person with cognitive decline will progress to the point where they need to retire. Companies should do their best to allow for a dignified exit that leaves the worker feeling some agency in the decision and provide the worker’s family with options for support, such as disability and retirement benefits.

Hopefully with greater awareness, employers in conjunction with medical experts and dementia awareness advocates will create sensible and sensitive policies to address this important issue.

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GeneMatch a way for older people to contribute to Alzheimer’s research

One of the tasks that has been on my to-do list since turning 50 is registering for GeneMatch, a program led by the Banner Alzheimer’s Institute. The program uses genetic testing to recruit people age 50-90 for Alzheimer’s prevention studies.

After what seemed like little activity for years when it comes to treatment options for Alzheimer’s and other dementias, in the past few years, new drug treatments have emerged that are offering some hope. These new medications have also been accompanied by controversy, as I’ve written before about Leqembi and Aduhelm. But one thing that isn’t in dispute is that effective treatments cannot be developed without a sufficient amount of study participants. According to the Alzheimer’s Prevention Registry, 80 percent of studies are delayed because of lack of qualified participants.

Joining GeneMatch is simple and free. Those who meet the basic requirements will be sent a cheek swab test that can be completed in the comfort of your home, and then returned in a postage-paid package. One thing to keep in mind is that you won’t necessarily learn the results of the genetic testing, but some studies may offer the opportunity to learn APOE results. Since I’ve had genetic testing done previously, I already know I carry one copy of the APOE e4 gene, which increases my risk for Alzheimer’s disease. With the disease appearing on both sides of my family tree, I’m eager to do whatever I can to find effective treatment.

For caregiver tips, check out my Caregiver Product Recommendations page, with a list of products that I used while caring for my parents.

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