Category Archives: Awareness & Activism

I’ve written a children’s book!

I’m excited to announce that I have written a children’s book, Slow Dog. I never expected to write a book for kids, but my rescue dog Murphy inspired me to take the leap.

Sometimes it’s rewarding to step outside of our comfort zone and look at life from a different perspective. When I adopted my senior mixed breed dog Murphy, I knew one of the challenges for me would be to adjust my fast-paced life to his decidedly slow-paced one. It was a deliberate choice as I knew it would benefit my overall well-being.

While Slow Dog doesn’t have any specific ties to dementia, it does celebrate moving at one’s own pace. That’s a helpful lesson for all caregivers.

Slow Dog is available in paperback and e-book formats on Amazon. Part of the proceeds will benefit metro Atlanta animal rescue organizations.

A big thank you to illustrator Lana Lee who captured Murphy’s special spirit so well.

Murphy with his book, Slow Dog.

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Complex relationships can complicate grief

With the passing of Queen Elizabeth and marking the 21st anniversary of 9/11 this weekend, I thought it would be a good time to discuss the complexities of the grieving and mourning process. As humans we often crave a blueprint for navigating difficult times. But as a recent article from Next Avenue points out, “Grief isn’t organized; it’s a mess and a natural human experience. There is no ‘normal’ way to grieve.”

I delved into the complicated relationships I had with my parents and how that impacted my grieving process in The Reluctant Caregiver. Diseases like dementia can also leave loved ones feeling conflicted; one may feel feel relief that their loved one is free of such a terrible disease yet still deeply mourn the person’s death.

Others may mean well but how one processes grief is an individualized process. What may seem “normal” for one person may be inappropriate for another. It’s also important to remember that there are many nontraditional family structures now and that we live in a time when people are more encouraged to share and process their family trauma.

For those who are grieving the loss of someone who they had a complicated relationship with, allow the feelings to flow naturally and try to ignore any societal expectations. If you would like help navigating the challenging journey, consult a therapist, grief counselor or grief support group.

Photo by Mike Labrum on Unsplash.

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Suicide risk among older adults deserves more attention

While younger generations seem to be more open about discussing mental health issues and suicide, there doesn’t seem to be the same level of openness among older generations. According to the CDC, people aged 85 years and older have the highest rates of suicide. Middle-aged and older white men also are at increased risk of suicide.

For caregivers, suicide risk awareness not only applies to those one cares for but for the caregiver themselves. Older adults and their caregivers may be dealing with debilitating physical and mental health issues, which may cause them to also be socially isolated and lonely. As this report from Next Avenue points out, depression is not a normal part of aging. But older adults may be experiencing grief over the loss of loved ones, or worrying about financial issues or their own health problems. Loss of independence and cognitive decline can also factor into an increased risk for suicide among older adults.

Caregivers may suffer burnout while trying to care for older loved ones and raising their own families. Recent studies suggest that burnout can cause changes in the brain. Stress is linked to an increased risk of a variety of health issues. The report from Next Avenue includes a list of common depression symptoms.

This week is National Suicide Prevention Week. Below are some resources that you can use if you are in need of help or are trying to help someone else who is experiencing a crisis. I took some suicide prevention courses earlier this year and one of the main takeaways I learned was how important it was to be direct if you feel a loved one is experiencing suicidal thoughts. One should ask, “Are you thinking about suicide?” or a similar direct phrase. Being this direct can be challenging in certain cultures but with someone’s life potentially on the line, one needs to push through any social awkwardness.

The new national suicide prevention hotline number is 988.

The American Foundation for Suicide Prevention offers resources and information on local community chapters.

The National Council for Mental Wellbeing offers a variety of resources including Mental Health First Aid training.

The National Alliance on Mental Illness offers this video with tips for caregivers.

Photo by Dan Meyers on Unsplash.

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Exercise in variety of forms offers cognitive benefits, new studies show

We all know that exercise can offer a variety of health benefits, including supporting cognitive health. Sedentary behavior has been linked to an increased risk of dementia. But as we get older, we may have physical limitations that prevent us from engaging in the strenuous physical activity we may have enjoyed or done with relative ease when we were younger.

A new study suggests that low-impact workouts, including stretching and balance exercises, offer the same cognitive benefits in the area of executive functioning as aerobic activity. The study was performed on young adult subjects, so more testing will be needed, especially on older subjects. These findings could lead to the introduction of passive exercise programs at long term care and rehabilitation facilities.

Another recent study focused on sedentary adults who had been diagnosed with mild cognitive impairment. Again, the results were promising: cognitive function had not declined after one year of regular workouts, whether it was moderate aerobic exercise or range of motion exercise. A control group of adults with MCI did show a decline in cognitive functioning over the same time period, researchers said.

So the next time you or an older loved one worry you are not getting enough exercise, just remember, any kind of regular exercise can support cognitive health, along with offering a host of other benefits.

Photo by Anupam Mahapatra on Unsplash.

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Hearing aids to be available over the counter

In what many consider to be a long overdue move, by this fall Americans will be able to buy hearing aids over the counter at pharmacies and drug stores. This will make getting a hearing aid a more affordable and convenient experience.

Hearing loss is considered a risk factor for dementia. While the connection is not fully understood yet, researchers believe that hearing loss may impair cognitive function in a variety of ways. A Johns Hopkins study is underway right now to determine if hearing aids reduce the risk of cognitive decline in senior adults. Results from the study are expected in 2023.

My father suffered from hearing loss around the same time he began to first show signs of dementia. Not being able to hear properly can have a negative impact on social interactions, which can also increase the risk of dementia.

Hearing is often something we take for granted but just like with vision, it’s important to note any changes and address issues promptly. Just like you can purchase a pair of reading glasses at your local pharmacy or drug store, soon hearing aids will also be available. Some medical experts are concerned that skipping a customized hearing aid fitting could have unintended consequences, such as not properly addressing a hearing loss issue. One should consult with their doctor if an OTC hearing aid fails to address their hearing loss but providing consumers more affordable and readily available options is an important step forward.

Photo by JD Mason on Unsplash.

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Prescription drug costs can be unexpected burden for elders

The legislation passed by Congress on Friday includes at least one initiative that has significant bipartisan support, especially among older Americans: Medicare will now be able to negotiate the prices of certain high-price drugs with drug companies.

In other countries, this is a common practice, but the pharmaceutical industry has lobbied hard against the measure over the years. AARP lobbied hard for elders and their families, and finally secured a victory.

I received an eye-opening education about the high price of medications when my father entered a memory care center during the last year of his life. He was put on several medications and Medicare only covered a portion of the costs. We had no say so on what medications he was placed on, and whether there was a generic, more affordable alternative. One medication was being used off label in a way that was not recommended in patients with dementia. We were left owing hundreds per month out of pocket, on top of the room rate of over $4,000 per month. We did not have the money to pay it off each month and after my father’s death, had accrued a bill of over $5,000 which we were able to negotiate down a bit and pay off out of my father’s estate.

The new legislation is limited in scope, but will still have a noticeable impact. In addition to negotiating drug prices, the legislation will:

Cap at $2,000 the annual out of pocket amount Part D prescription drug plan members would have to pay for their medications.

Levy a tax penalty on drugmakers that increase prices of their medications more than the rate of inflation.

Cap the cost of Medicare-covered insulin at $35 a month. (The insulin cost cap for private insurance did not survive a vote, so for now the cap only applies to Medicare members.)

Eliminate out-of-pocket costs for most vaccines under Medicare.

Photo by National Cancer Institute on Unsplash

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A mantra for those who are grieving

What we’ve learned about grief is that it is a very personal, individualized process. No one grieves for the loss of their loved ones in exactly the same way. While plenty of guidance exists for those who are struggling through the grieving process, it truly is a journey we take alone.

When psychologist Carol Ellstein lost her first husband suddenly and unexpectedly, she developed a mantra to help with the grieving process. What she chose really resonated with me: “Grief sucks. Life goes on.”

I liked the realist approach, as it is what I embraced and wrote about in my book, The Reluctant Caregiver. This approach isn’t for everyone, but it can be liberating to stop trying to force yourself to see the bright side and sit with the meaning of loss until you’ve processed it enough to move on. That process may take months, years, or it may be ongoing for the rest of your life.

Mantras aren’t set in stone; they can be adapted along your grief journey. A friend of Ellstein’s offered a playful twist to her mantra by suggesting, “Life sucks. Grief goes on.” Ellstein found there were days as she was in the early, active grieving process in which her friend’s suggestion was fitting. She would offer herself more self-care on the days in which “life sucked.”

As time moved on, Ellstein’s mantra continued to evolve. By the second year after her husband’s death, her mantra became, “Grief still sucks, and life still goes on.” By year three, she found that she didn’t need to use her mantra as much, as she emerged into a new normal.

I hope Ellstein’s approach can be helpful to others who are embarking on that dreaded journey of grief. It does indeed suck, but there are moments of profound insight that emerge as well.

Photo by Nick Fewings on Unsplash.

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What to make of the surprising findings in the new vitamin D study

Is there value in taking a daily vitamin D supplement? A large study funded by the federal government and published last week in The New England Journal of Medicine came to a surprising and definitive conclusion: there is no benefit for most people.

This was true even for reducing the risk of bone fractures, which is the specific area the study was examining. My mother was diagnosed with osteoporosis and was instructed by her doctor to take calcium with vitamin D daily, along with a weekly dose of Fosamax. The new study found that vitamin D supplements did not significantly reduce the risk of bone fractures.

I’ve always been skeptical of vitamins and most supplements. I remember in my twenties going to the doctor for an annual exam and being lectured about “dangerously low” vitamin D levels. The doctor was surprised I was still functioning normally with such low vitamin D levels. The doctor wanted me to come in for weekly injections. I declined. I’ve continued to function just fine. The new study points out that labs in the U.S. set the normal vitamin D level at a value that would make most people appear to be deficient.

Fast forward a couple of decades, and I have been taking calcium plus vitamin D supplements for the past several years. I don’t take a multivitamin or other supplements except for a probiotic. But because of my mother’s osteoporosis diagnosis and the fact that I’m lactose intolerant so I try to moderate my dairy intake, I figured it was a reasonable supplement to add to my regimen.

There is another reason I will continue to take calcium plus vitamin D, even though I remain skeptical of the benefits. The researchers of the new study found that people with certain conditions, such as celiac disease and Crohn’s disease, do benefit from vitamin D supplements. I have the genetic markers for celiac disease, and consider myself an undiagnosed case though I never did the biopsy that is the gold standard for diagnosis.

My guess is many doctors may shrug off the results of the new study and continue to recommend vitamin D supplements, as there is little risk of harm and there may be benefits. The massive, lucrative vitamin and supplement industry will no doubt agree. Consumers appreciate the convenience of a pill, but most would likely be better off focusing on eating a nutritious diet.

Photo by Michele Blackwell on Unsplash.

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Researchers develop tool that uses audio recordings to detect dementia

Researchers have discovered a new way to diagnose dementia, one that could lead to an automated online diagnosis process.

Currently those concerned about memory issues may go through a battery of cognitive tests. Those tests can include identifying images on a card, reciting a list of random items that are spoken aloud and the famous “clock test,” which requires one to draw a clock set at a specific time. These tests are typically done in person, in a clinician’s office.

Researchers from Boston University have developed an automated tool that can detect not only dementia but mild cognitive impairment (MCI) with impressive accuracy. Such a model could offer great benefits, as early detection is key to being able to access early interventions and get people enrolled in clinical trials. Online testing access would be a key benefit in remote areas.

The computational model uses audio recordings of neuropsychological tests to detect cognitive impairment. The model focuses on the content of what is said versus how words are spoken, researchers said. Researchers discovered that the Boston Naming Test, in which individuals are asked to label a picture using a single word, is the most useful for an accurate dementia diagnosis.

You can read more about the research at Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association.

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Stuff You Only Whisper — When Dementia Knocks

Those of us who have cared for a loved one with dementia know the roller coaster of emotions one can feel. Click on the post below from When Dementia Knocks to learn more about one common yet guilt-ridden experience: wishing for our loved ones to depart this world to finally be free of this terrible disease. I know I felt this more than once towards the end of my father’s life.

Last week, a caregiver told me something that she considered so horrible that she could only say it in a whisper. She told me about her husband and his Alzheimer’s journey. He had just moved from a memory care community to a nursing home. She wasn’t pleased with the care he was receiving. Their kids […]

Stuff You Only Whisper — When Dementia Knocks

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