Tag Archives: dementia

Thoughts on the FDA approval of aducanumab to treat Alzheimer’s disease

Alzheimer’s was in the spotlight this week due to the FDA’s controversial decision to approve the drug aducanumab for treatment of the disease. I’ve closely followed the debate and can understand why some hope this is the breakthrough drug we’ve all been waiting for while also agreeing with critics who question the FDA approval process for this drug due to the limited evidence of its effectiveness in trials. There’s also the hefty price tag to consider.

Choosing whether to take a medication or undergo a treatment is a personal decision that should be made with the consult of family and trusted physicians familiar with the individual’s case. Below I’ll go over some general takeaways to consider. If you know of someone who was in the trial I’d love to hear about their experience.

Target treatment group: Aducanumab has so far only been studied in people living with early Alzheimer’s disease and mild cognitive impairment (MCI) due to Alzheimer’s. The FDA approval will allow it to be prescribed to those at any stage of the disease.

How it works: Aducanumab targets the amyloid beta plaque in the brain with the goal of reducing the plaque buildup and slow the rate of cognitive and functional decline.

How effective is it? This is where the main controversy arises. Biogen, the maker of aducanumab, was only able to provide very modest evidence that the drug offers a tangible benefit. “The average degree of improvement on a 0-18 point cognitive scale was just 0.39 points relative to placebo, far smaller than the 1 or 2 point threshold typically used to define a clinically important difference,” according to the two physicians who wrote this Washington Post opinion piece. Trials of the drug were halted in 2019 because an analysis concluded the trials were unlikely to be successful in hitting their goals at completion. But months later, after analyzing a wider set of data and discovering the nominal improvement, Biogen announced it was seeking FDA approval of aducanumab, CNN reported. After an FDA panel voted overwhelmingly to not recommended that drug approval move forward, the FDA eventually greenlighted aducanumab.

The drug was granted Fast Track designation and approved using the accelerated approval pathway, which only requires a “reasonably likely to predict a clinical benefit to patients” and also requires a post-approval trial to verify that the “drug provides the expected clinical benefit.”

What are the side effects? The most common side effects of aducanumab  were “headache, fall, diarrhea, and confusion/delirium/altered mental status/disorientation,” according to the FDA. Brain swelling was also reported by some trial participants.

How expensive is it? Very expensive. The drug is expected to cost $56,000 per year. Part of the expense is in how the drug must be delivered, via infusion every four weeks. There may also be expensive imaging tests required to begin treatment. While insurance companies are expected to pay for some of the cost, it is unclear how much Medicare will reimburse, CNN reported.

What are the general expectations? Those who take aducanumab may see modest improvements in cognitive functioning or see a reduction in the speed of decline in cognitive functioning. It’s important to note that while the drug may remove amyloid plaque from the brain, that doesn’t guarantee an improvement in cognitive functioning. Advocates see it as a treatment with potential, but not a cure. Aducanumab is the first drug to treat Alzheimer’s disease that the FDA has approved since 2003. It has been a long wait, and that is why the drug’s approval has been met with a mixture of hope and skepticism.

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Too strange to be true? Not always

I had a strange experience this week that reminded me of one of my favorite stories in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. This collection also includes a story I wrote about my father called “French Toast.” The story that I find so delightful is “The Bird,” about a woman with Alzheimer’s who is living with her adult daughter. One late night the mother wakes her daughter up and announces that there is a bird in the house. The daughter is skeptical, as most dementia caregivers would be, because hallucinations and other visual disturbances are not uncommon. But it turns out that the woman with dementia is correct and there is a real bird fluttering around the house!

I’ve been hearing strange noises coming from the house alarm system. It was intermittent, maybe every few months or so, but the noise sounded somewhat like chirps or squeaks. Sometimes I wondered if I was imagining things, and felt silly for thinking about a creature being inside the alarm system. When the pandemic struck, I had a hole on the roof where rats got in repaired. Even after the rats were gone, I still heard the occasional weird noise from the alarm system. The alarm system continued to work fine, so I didn’t consider it a priority to fix, especially during the pandemic lockdown.

This week the security system had to be upgraded because it was using old 3G technology that is being phased out. I was on the fence about mentioning the sounds to the technician, on account he might think I’d lost my mind. I was shutting the back door on his request and about to mention the sounds when he removed the alarm console cover. He announced, “You’ve got lizards!”

Mystery solved! I’m still not sure how they got in from the outside but they were likely attracted to the warmth of the circuit board. The one in the photo was the larger one and a smaller companion slithered out as well. I’d be happy to let them back outside but haven’t seen them since the ordeal. My cat will probably spot them before I do. On the rare occasion I’ve seen one in the house prior to this incident, the cats would surround it but thankfully were more curious than in hunter mode.

Other than an amusing story, what I’m taking away from this is the same moral from the Chicken Soup for the Soul story. The daughter said how enlightening it was to put herself in her mother’s shoes, and imagine how it would feel to not be believed. I wondered if I was imagining things as well, and there is a relief when one receives validation. To be less automatically dismissive is a good lesson for all of us, especially when interacting with those with dementia.

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Disturbing case highlights need for dementia training for law enforcement

Video courtesy of The Life & Liberty Law Office

UPDATE: The officers involved in the arrest of Karen Garner have been charged and arrested.

A second video in this case has been released, showing the police reaction back at the station. It is almost equally as disturbing. In my opinion, this isn’t a case of “gallows humor” used as a coping mechanism by those in law enforcement, health care, etc. who face daily traumas. As a journalist, I often find that dark humor in private exchanges can help buffer the pain of covering a terrible crime story. But laughing and boasting about injuring an older woman’s shoulder while making “pop” sound effects displays an utter lack of humanity and should make one unfit to serve in any role involving the public. Would any of these officers want their elder relatives treated and mocked in such a way? It also reinforces the urgent need for better training and accountability.

Original post:

A case in Colorado involving the arrest of a 73-year-old woman with dementia for attempted shoplifting grabbed national headlines this week. It disturbed me personally because my father was in a similar situation. I believe many dementia caregivers fear this situation for their loved ones and we must do better as a community to protect those with dementia from ending up in this heartbreaking situation.

Karen Garner, 73, filed a lawsuit this week against the city of Loveland and its police officers. The incident took place in June 2020. Garner is accused of attempting to walk out of a Walmart with $14 worth of merchandise without paying. Walmart employees stopped her and were able to retrieve all items. According to the lawsuit, she offered to pay for the items at that point but the store declined, instead calling police to report the incident and offer the location in which Garner began walking. Store employees told police that the store had suffered no loss, according to the lawsuit and video of the arrest.

You can watch for yourself what happens next, as a police officer tracks down Garner. Warning: It is disturbing.

Garner is 5 feet tall and weighs 80 pounds. According to the lawsuit, her shoulder was dislocated during the arrest and she now requires assistance with daily tasks like bathing. She didn’t receive medical care until several hours later, though she complained of pain during the arrest. The criminal case against her was dropped by the district attorney’s office, while no disciplinary actions were taken against the officers until this week, when the lawsuit was filed and the video of the arrest went viral.

There is so much wrong here, and it starts way before the officers arrived. First and foremost is that America does a poor job in how it interacts with those who are mentally ill in the public sphere. I don’t know if Walmart has a blanket policy on calling police when minor incidents like this one happen in which a shoplifting attempt is thwarted, but this could have all been avoided if they had handled the situation internally. Ask if a family member can be called to pick her up and speak to them. Ban her from the store. Take a photo of her and post it in employee areas so staff know to be aware.

Police departments need better training in interacting with those with dementia and with mental health challenges in general. This arrest of Garner was a waste of law enforcement time and resources, and demonstrates the urgent need for engaged community policing.

And of course we need better resources for those with dementia. We don’t know Garner’s personal situation, if she was still attempting to live alone without regular supervision or if she wandered away. Both are common scenarios, and leave family members fearful for their loved one’s safety. With many adult day programs shut down due to COVID-19, there is likely an increase of those with dementia who feel bored and restless. While there are privacy concerns, offering identification that one has dementia could be helpful. The officer looked through Garner’s wallet about midway through the arrest. If there had been a card that said, “I have dementia. Please call this number for assistance,” the officers may have responded differently.

I thought about a similar incident with my father. I talk about the “burrito incident” in my book, The Reluctant Caregiver, and how it became a turning point in our family. He was at the stage of Alzheimer’s where his symptoms were becoming more apparent, but he still wanted to be independent. My mother sent him on an errand to pick up some items at a nearby convenience store, where they were regular customers. He picked up a couple of burritos and tried to walk out without paying. The clerk stopped him and my father got verbally agitated. Fortunately my mother was called instead of the cops and she hurried down to handle things. I believe my father would have ended up like Garner if the police had been called. Perhaps even worse.

None of this is easy. Police officers are not mental health experts, nor are store clerks. The pandemic has disrupted funding and access to community services. But it is clear in this particular case that no justice was served. I hope this case can demonstrate how broken our community services are for those with dementia and other mental health challenges and inspire solutions that are based in common sense and compassion.

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Alzheimer’s Insights: Longer days ahead can affect different aspects of our physical and psychological health — L’Observateur

We will turn our clocks forward this coming weekend, officially at two a.m. on Sunday, March 14.  Of course, no one does it at that precise time.   The general practice is just to move clocks ahead an hour when you go to sleep Saturday night, and don’t forget the clock in your vehicle! For most of us, […]

Alzheimer’s Insights: Longer days ahead can affect different aspects of our physical and psychological health — L’Observateur

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2021 Alzheimer’s disease facts and figures

While always a sobering overview, I believe it is important to review the annual analysis that the Alzheimer’s Association releases.

READ: 2021 Alzheimer’s disease facts and figures

Some important takeaways:

  • More than 6 millions Americans are living with Alzheimer’s
  • Over 11 million Americans provide unpaid care for those with Alzheimer’s and other dementias
  • 1 in 3 American seniors die with Alzheimer’s or other dementia
  • This year, Alzheimer’s and other dementias will cost the nation $355 billion
  • The value of the care unpaid Alzheimer’s caregivers provide is $257 billion

One other important statistic to note is the racial disparity in care. Discrimination in the health care setting can prevent or delay people getting the care they need. Half of Black Americans report such discrimination. Over 40 percent of Native Americans reported discrimination. Over a third of Hispanic and Asian Americans reported discrimination. I would also add to this the discrimination that women face in healthcare settings. Discrimination can take many forms, including a doctor not taking complaints of pain as seriously and assuming a symptom is emotional vs. physical in nature. I remember my own mother suffering at the hands of doctors who did not take her cancer pain seriously, instead assuming she was drug seeking.

As caregivers, we must be vocal and tireless advocates when faced with such discrimination. Don’t be afraid to ask for a different doctor if you are uncomfortable or dissatisfied with the care being provided. I’ve read many accounts from adult children who sought treatment for their elder parents with signs of dementia but the doctors shrugged off symptoms as the elder was able to present well for the duration of the appointment. Be persistent. While there is no miracle treatment for Alzheimer’s or other dementias, there are medications and treatments which may help in the earlier stages. That is why receiving a correct and timely diagnosis is crucial.

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Finding a Live-In Arrangement That Works — Dealing with Dementia

Plan ahead for your elder loved ones who live alone and wish to age in place. You will want to take your time in vetting care workers and finding one that is the right fit. Kay Bransford offers helpful tips on her blog.

Most of the individuals I work with that are still in their home want to stay there. The ongoing COVID issues have made many individuals and their families second guess community care. 472 more words

Finding a Live-In Arrangement That Works — Dealing with Dementia

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Holiday gift ideas for dementia caregivers

We could all use some good cheer and a thoughtful gesture after such a challenging year. It you are looking to get a gift for a dementia caregiver, here are a few ideas.

Self-care: Family caregivers are notoriously bad about taking care of their own needs, but caregiver burnout puts everyone at risk. Caregivers are often short on alone time, so take that into consideration when choosing gifts. A candle with a soothing scent, calming tea, music to lift the spirits, a book of daily inspirational posts —choose something that will allow a caregiver to enjoy a momentary respite even while they are isolating at home with their loved one. Take a look at my CBD gift guide for other self-care gift ideas.

Homemade gifts: Whether it’s a favorite dish, a knitted item, a phone call or a handwritten card, showing you care in your own special way makes for a thoughtful gift. Family caregivers, especially of those with dementia, often feel isolated as friends drift away, uncertain how to navigate cognitive impairment. Simply reaching out with a small token of affection is worth more than you can imagine.

Helping hand: If you are a handy person, consider offering your services to repair something in or around the caregiver’s home (of course taking precautions due to the pandemic.) Or consider a subscription to a meal delivery service, or a gift certificate for grocery delivery or delivery from their favorite restaurant. Anything that will ease the burden of maintaining the household will be appreciated.

Genealogy: Some people with dementia remember the past better than the present. A gift for a genealogy service or scrapbooking materials for those who are not digitally inclined can be a gift for both the dementia caregiver and the loved ones they care for. Capturing those family memories is priceless. Gathering old photos and assembling them while remembering family stories can be a wonderful bonding activity. I find both the online services and scrapbooking to be enjoyable. This is also a good project to do while housebound due to the pandemic and/or inclement weather.

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The Link between Dementia and Mismanaged Finances — Dealing with Dementia

My father began to struggle with money issues years before other signs of dementia became apparent. He would argue with clerks because he thought they overcharged him and had trouble paying for items in cash, especially if change was involved. He began to carry a large wad of bills around and would dump large piles of coins on the bed in an attempt to “sort” them but there was no organization taking place. Your loved ones may have more subtle signs of financial issues due to cognitive decline, but it is important to monitor.

Read more below from Kay Bransford of Dealing with Dementia.

Eureka! What I recognized anecdotally for years is now published research that concluded financial symptoms of cognitive issues are surfacing up to six years before a formal clinical diagnosis. SIX YEARS. You are noticing changes in your own thinking, or you are seeing changes in a loved one that is concerning, but the primary care…

The Link between Dementia and Mismanaged Finances — Dealing with Dementia

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Teens develop, win prize for dementia app

There has been so much bad news lately that I wanted to spotlight a story about what the younger generation is doing to support dementia research. A group of teen girls in Ireland used the pandemic lockdown for a worthwhile cause.

The mentor’s mother had dementia, which helped inspire the team to create the Memory Haven app. Designed for use by both people with dementia and their caregivers, it has features designed to address three main issues: memory loss, difficulty with recognition and speech impairment. I loved how thoughtful the app is, using tools like facial recognition and music to help lift the moods of those who are feeling down.

While the teens are a STEM (science, technology, engineering and mathematics) success story, they unfortunately faced sexism and racism along the way. I hope their inspirational story will encourage youth around the world to support dementia research.

You can learn more about the app and see it in action in this BBC report.

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Navigating the ER as a dementia caregiver can be challenging

Emergency room entrance sign with ambulance

Steve Shepard

I was moved this week when I watched the video of a Maryland woman who was distraught because she was told by hospital staff that she would have to leave her mother-in-law, who was in severe pain and has Alzheimer’s, alone in the emergency waiting room due to COVID-19 restrictions.

As a former dementia caregiver, I can empathize with the helplessness and the frustration that Laura Kramer felt. It’s ridiculous that Kramer had to take her mother-in-law to another county in order to receive treatment and be at her side as her family caregiver. You can watch her emotional plea.

My own father had multiple trips to the emergency room in the last year of his life while he was a resident at a memory center. Their procedure was also to leave the patient at the ER once admitted because they didn’t have the staff to wait with the resident. I often thought about how confused and scared my father must have been, alone in a chaotic emergency room atmosphere.

The good news is that Kramer’s experience forced the hospital to revisit its guidelines and admit that they had made a mistake. Of course COVID-19 restrictions are necessary in a healthcare setting, but no-exception policies could have deadly consequences when it comes to caring for those with cognitive issues. Kramer’s actions should be a role model for other caregivers who find themselves in similar situations.

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