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.

Photo by C D-X on Unsplash.

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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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Joe & Bella launch CareZips Classic, an innovative adaptive clothing line

CareZips by Joe & Bella

Caregivers know that one of the more challenging daily tasks can be helping loved ones get dressed. Not only can it be a physical challenge for all involved, there is also the important elements of independence and dignity. For people with continence issues and those with dementia, it is essential that they have clothing that is easy to manage.

My mother struggled trying to aid my father in getting dressed and going to the bathroom in the early to middle stages of Alzheimer’s. He was often stubborn and didn’t want to accept help, which led to accidents and the dreaded clean-up. The only time my father was physically abusive was during one such moment, when she was trying to help him into his pajamas. He got frustrated and struck her in the jaw. I often think about others facing a similar situation each night, feeling alone and in need of help.

This is why I’m pleased to learn of the launch of CareZips Classic by Joe & Bella. This adaptive clothing line offers innovative zippers from the waist to the knees that easily open the entire pant up to make dressing, using the bathroom and cleaning up accidents easier on both the wearer and their caregiver.   Its design means one does not have to fully undress to perform routine tasks.

CareZips recently won the 2022 best-product award from Caregiver.com.

Enter code Gift10 to receive a $10 Joe & Bella gift certificate for each pair you purchase. For every purchase you make at www.JoeAndBella.com, a portion of the proceeds is donated to frontline caregivers. Joe & Bella has already supported more than 100 care communities through their “give-back” program.

Please share with the caregivers in your life!

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Holiday celebration tips for dementia caregivers

I’ve seen many articles this week about preparing pets for the often loud Fourth of July celebrations. It is true that some animals have a severe reaction to the booming blasts of fireworks, so it’s best to keep them indoors and monitor for signs of stress. I feel fortunate that my current crew (one dog, two cats) don’t seem to be bothered much by fireworks.

But the advice made me consider another group who many be overwhelmed by this weekend’s festivities: people with dementia. The noise, the lights, extra people in the house … it can be challenging for someone with dementia.

Here are some dementia caregiving tips on how to navigate the holiday:

  • Remain flexible: If you are taking your loved one to a public fireworks display or parade, be aware of how your loved one is faring and if you see signs of discomfort or stress, be prepared to leave early.
  • Keep celebrations small and low-key: An intimate dinner or small barbecue with a select group of people can help keep your loved one with dementia from feeling overwhelmed. Hosting at your home means that if your loved one wishes to retire early, they can do so with ease.
  • Find fun ways to celebrate: Just because you are stuck at home doesn’t mean you can’t have fun. Indulge in a favorite meal, play festive music, dance, or watch a favorite movie. Take time to connect in simple ways.
  • Don’t feel guilty if things don’t go as planned: Those with dementia can have good and bad days, and it can be hard to predict what mood they will be in at any given moment. If an event or gathering proves too much for them, don’t be too hard on yourself. Once your loved one is comfortable again in a safe environment, take a moment for yourself. Learning from our mistakes is key in being a successful caregiver.

Photo by Jingda Chen on Unsplash.

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New survey shows need to increase Alzheimer’s awareness for American women

While it may seem unfathomable to those of us who have seen Alzheimer’s and other dementia touch the lives of our families, a new survey from the Cleveland Clinic suggests that the majority of American women may not be aware of their own risk for the disease.

In what researchers from the Women’s Alzheimer’s Movement (WAM) at Cleveland Clinic called a “startling fact,” 82 percent of women do not know they are at increased risk for Alzheimer’s disease, though two-thirds of cases are women. Only 12% of women who took the survey knew about a potential link between estrogen loss and Alzheimer’s, an area that the Cleveland Clinic is researching.

In other findings from the study, 73% of women have not had a discussion with their doctors about their cognitive health and 62% of women have not discussed menopause or perimenopause. The changes women experience during menopause can impact cognitive health, so it’s important for women to talk to their doctors to learn steps they can take to reduce their risk of dementia.

According to the study, two in five women have dealt with anxiety, depression and/or insomnia.

One not surprising finding from the study: 56 percent of women reported not getting enough sleep. We know that sleep quality can have a direct impact on cognitive health and there is research to suggest poor sleep quality during mid-life can increase one’s risk of dementia. A potential reason for the poor sleep? Over half of the women who took the survey said they cared for others.

While the results of the survey are concerning, researchers said the good news is that women are interested and motivated in learning more about ways they can maintain good cognitive health.

Image by geralt/Pixabay.

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Reflecting on Father’s Day

Thinking of Dad on this Father’s Day weekend. One thing I’ve been reflecting on lately is how even when my father was dealing with the latter stages of dementia, he would tell my mother and I to be careful. He was still trying to protect his family.

To those who have lost their fathers to dementia or who are actively caring for their father with dementia, I hope you can find comfort in loving reflections. For those whose fathers are still alive, I hope you get to spend quality time with him this weekend. Finally, I want to recognize all of the amazing male caregivers out there, fathers and husbands and brothers and sons, who care with compassionate strength.

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Reminder about the dangers of extreme heat

Here in Atlanta we are looking at a brutal heat wave, with temperatures expected to be in the mid-90s for the next couple of weeks. Summer begins officially on June 21, but in some parts of the country it has arrived early.

It’s important this time of year to check in on elder loved ones and neighbors. No one should be dying of heat exposure in their homes in our modern times, yet each year, heat-attributed deaths occur. Those at greater risk include elders, those with pre-existing health conditions and those in public or institutional housing which may not have adequate air conditioning.

I would note another factor, which may be the most tragic of all. Some elders may have air conditioning, but are afraid to turn it on because of the cost. That’s why it’s important to check in and make sure your elder loved one’s homes are adequately cooled. Fans may not be enough in areas experiencing a prolonged spell of extreme heat. Check with local officials to see if public cooling stations are available.

The National Institute on Aging offers tips and resources on hot weather safety for older adults.

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