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.
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.
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 […]
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.
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.
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.
This is a very good message to pass along to the dementia caregiving community. While I tend to focus on the struggles of being a reluctant caregiver, it’s important to note that some caregivers do find a way to maintain a decent quality of life. As Elaine points out in her blog post, having sufficient funds to cover care costs is part of it, but attitude is also a factor.
Click through the link below to read the thoughtful post from When Dementia Knocks:
I write a lot about the challenges of dementia caregivers…their high rates of clinical depression and anxiety…their loneliness…their daily stressors. This post doesn’t change anything I’ve written in the past, but I do want to acknowledge something. Some caregivers are doing okay. Some caregivers are happy. Some caregivers are enjoying life and thriving. That doesn’t […]
It has been 7 years since my mother died. The pandemic has made time’s passing more difficult for me to track. Seven years feels both not long ago and yet another lifetime ago. I think my mother would be very upset about the state of the world right now, as she always looked for common ground and the good in people. Those things seem to be in short supply these days.
I did have a moment of synchronicity today. I was listening to Glenn Campbell’s late masterpiece albums, Ghost on the Canvas. It was recorded after Campbell’s Alzheimer’s diagnosis and was one of my mother’s favorite albums. It’s one of my favorites too, and I’ve listened to it dozens of times. Today I played it on the YouTube app on my TV and when I looked up during one of the instrumental interludes, I realized the song was titled, May 21, 1969.
I had never noticed this before! According to information I found online, May 21, 1969 was the date the date Campbell’s network variety show debuted on network TV. It would become a hit and known as “The Glen Campbell Goodtime Hour.”
What are the chances that May 21, the day my mother died, would also be in a song title of one of our favorite albums? The moment felt like Mom’s spirit connecting with me through the wonders of the universe.
It seems rare that justice is done in cases like these so I wanted to give an update on a case that I’ve written about previously on The Memories Project.
A police officer in Colorado who used excessive physical force against a 73-year-old woman with dementia who had been accused of shoplifting has been sentenced to 5 years in prison.
The case went viral after the video of the rough arrest was released to the public and shared on social media. Karen Garner was accused by Walmart staff of trying to walk out of the store with $14 of merchandise in June 2020. Staff were able to retrieve the merchandise in question, but Garner walked away from the store before police arrived. Officer Austin Hopp attempted to stop Garner, who was confused and not cooperative due to her dementia. Hopp proceeded to slam Garner to the ground during the arrest, dislocating her shoulder. She was also hogtied and suffered a fractured arm and sprained wrist.
Garner’s ordeal didn’t end there. When she complained about pain at the police station, she was mocked and ignored. Hopp and two other police officers laughed about the incident, boasting, “We crushed it.”
You can watch the arrest below. Viewer discretion advised.
A female officer involved in the arrest has also been charged in the case and has a court hearing in June.
This is such an important topic and I’m grateful for Kay Bransford’s excellent blog post. As my father’s dementia progressed, simple tasks like paying for groceries or a fast food meal became a challenge that caused my father to become angry and accuse others of trying to rip him off. My mother eventually had to take over those tasks. After my father’s death, my mother’s loneliness made her susceptible to the barrage of telemarketers who would call on a daily basis. As a long-distance caregiver, it was difficult and frustrating for me to try and manage from afar.
Click on the link below to read the helpful post on Dealing with Dementia:
There were a few odd conversations with my Mom when things didn’t make sense. But the most alarming thing was when I realized my parents had changed their decades-long habit of giving every January. I started to notice that my mother was writing checks to charities that they had never previously supported. I would read…