Tag Archives: Alzheimer’s

Staff shortages a growing hurdle for home care

Those of us who have utilized home health care for our loved ones are well aware of the staffing challenges in the industry. The pandemic intensified the problem and has moved the issue into the national spotlight. Will we find solutions as the demand for home health care is likely to increase in the coming years?

My father’s journey with Alzheimer’s ended a decade ago. Like the woman interviewed by the New York Times for a recent article on the shortage of home care options, my mother cared for my father at home for as long as she could. Her preference would have been to care for him at home, with adequate outside support. There were sporadic home health care visits to address physical health issues, but the bulk of the care fell on my mother. My father ended up being hospitalized for a medical condition which required surgery and was not physically well enough at the time to be released home. He was placed in a memory care center an hour-and-a-half drive away from my parents’ home. It was the closest facility with an opening. The distance put a huge strain on my mother, who didn’t have personal transportation and had to take a bus to visit my father.

My mother used home health care while she was recovering from cancer, but in her rural community, staffing shortages and high turnover meant limited visits and the bulk of daily care falling on my shoulders. I had to quit my job in order to provide that care, and while I’m grateful I was able to be there for my mother, it created a significant financial burden that I’m still trying to pay off several years after her death.

Most people’s preference is to age in place at home, but people are in for a rude awakening if we don’t adequately address the problems within the industry. While staffing has rebounded to pre-pandemic levels for the most part, demand continues to grow. According to the New York Times, “More than 800,000 older and disabled people who qualify for Medicaid are on state waiting lists for home care.”

That’s a lot of people, and the ripple effect that it causes for family members who have to drastically alter their lives to fill in the care gaps cannot be ignored. There is a lot of talk about “elevating the profession” and that is long overdue. Better pay, better benefits, a career path that offers further training or certifications would help attract and maintain staff. Adjusting our immigration policy to welcome those who want to work in the care industry is another option being discussed. At some point soon, we must move beyond just mere talk and take action.

In the meantime, families are left scrambling and our loved ones in need of care suffer.

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The Story You Are Living Is Bigger Than You Know — Life, Love, and Alzheimer’s

“Right now, you may only feel the weight of its burden rather than the weight of its significance, but one day you will look back and realize everything you have learned from this experience.”

So true, can’t wait to read this book!

The Story You Are Living Is Bigger Than You Know — Life, Love, and Alzheimer’s

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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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Study suggests Alzheimer’s develops in 4 distinct patterns

A recent study found that the spread of a key marker for Alzheimer’s develops in four distinct patterns, each presenting with a specific set of symptoms. The findings could help provide more targeted treatment for Alzheimer’s in the future.

An article in Genetic Engineering & Biotechnology News offers a good overview of the study. Researchers focused on the spread of the tau protein in the brain, which has long been a key marker for Alzheimer’s. Studying the PET scans of approximately 1,600 individuals in relation to tau pathology, researchers found four distinct patterns:

  • Variant one: Found in 33 percent of cases and primarily affects the memory. The tau spread was mainly found in the temporal lobe.
  • Variant two: Found in 18 percent of cases and targets executive functioning. Tau spread was in the rest of the cerebral cortex.
  • Variant three: Occurring in 30 percent of cases, this variant targets the visual cortex, leading to a variety of visual processing issues.
  • Variant four: Found in 19 percent of cases, this variant spreads in the left hemisphere, leading to issues with one’s language ability.

I thought these were intriguing findings. Of course more research is needed in this area to confirm the findings of this study and learn more about the variants. But these finding could eventually lead to better, more targeted treatment for the specific variants of Alzheimer’s disease.

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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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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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