Category Archives: Awareness & Activism

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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When nursing homes close suddenly, families suffer

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What would you do if you receiving a notice that the nursing home where your loved one resides is closing in a few days? It’s a nightmare situation and a case is unfolding right now in metro Atlanta.

In the case of Tranquil Gardens Assisted Living and Memory Care, residents and their families were given just three days’ notice that they must vacate the premises due to foreclosure on the property. The facility housed those with dementia and also provided hospice care, and families are outraged that their loved ones in fragile health are being kicked out of their homes and forced to find new accommodations with such little notice. By law, facilities are supposed to provide at least a 30-day notice.

In a statement, the owner cited the pandemic’s financial toll as a reason for the sudden shuttering of the facility. The statement did not explain why there was not an effort to provide a more reasonable notice, citing “a domino effect of things out of our control transpired at the end that led to a very heartbreaking and rapid end to the facility.”

In addition to the residents losing their homes, the employees of the facility are losing their jobs and may not even receive a final paycheck.

This terrible scenario may happen with more frequency in the months to come. A report in The 19th highlighted a recent survey by the American Health Care Association and the National Center for Assisted Living which found that only one-quarter of nursing home operators are confident they can keep their doors open for at least one year. “The cost to fight COVID-19, chronic underfunding of Medicaid and the number of patients dropping to record lows have led to the industry’s near collapse,” The 19th reported.

There are no quick fixes to the industry’s woes. It will require a mix of funding, better pay for care workers to address the workforce shortage and better transparency and accountability. In the meantime, if you have a loved one in a nursing home, you should consider putting together an action plan just in case you have to face a similar situation in which the facility suddenly closes.

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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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George Romero’s ‘The Amusement Park’ an unsettling, revealing look at ageism

A “lost” film from the late, great horror film director George Romero was released this month and has people talking about its contributions to ageism and how society treats its elders.

Romero is perhaps best known for the zombie classic, “Night of the Living Dead.” In the early 1970s he was commissioned by the Lutheran Society to create a PSA of sorts that would deal with ageism and society’s poor treatment of older people. The organization was displeased with Romero’s surreal yet gritty take on the subject matter, so the film was shelved until recently, where it is now streaming on Shudder.

I found the film to offer a more accurate take on what it feels like to grow old in this country than one might think at first glance. The film follows the main character as he navigates his way through a bureaucratic nightmare of an amusement park, where elders find themselves charged exorbitant prices, banned from certain rides and harassed as nuisances. There is a speech by the main character at the beginning of the film that offers this ominous line: “Remember as you watch the film, one day you will be old.”

It’s sad to say that in the decades since this film was made, we haven’t progressed that far in the way we care for our elder population. The release of this film now as we grapple with the fallout from the pandemic only reinforces the importance of elder care and how it reflects upon a society.

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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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‘Duty Free’ a moving documentary on ageism, caregiving and economic insecurity

There are so many excellent documentaries about caregiving that have been released over the last few years and I’d like to highlight a recent entry, “Duty Free.” It’s about a woman named Rebecca who gets fired from her job at age 75 and is facing a dire housing and economic situation while caring for a son with mental health issues. Her other son, a young filmmaker, uses the challenging moment as an opportunity to help his mother complete a bucket list of adventures and experiences she never got to enjoy as a single immigrant mother raising two children. What transpires are moments of joy and heartbreak as Rebecca forges a new path for herself while addressing her past.

I found this documentary to be very moving while spotlighting an issue that more and more elders find themselves facing. Retirement is becoming less of a certainty as rising economic insecurity means more and more older people will continue to work their entire lives. Rebecca immigrated to this country when she was young and worked hard all of her life in the hotel industry, working her way up to a supervisor position in the housekeeping department before being fired at age 75. Her housing arrangement was also nullified as the result of her job termination, so Rebecca was facing dual hardships. We know from studies that starting around age 50, women in particular find it much harder to secure employment or move forward in their careers. At Rebecca’s age, though she is still vibrant and physically active, the job search is even more grim.

The film also is about caregiving, as Rebecca financially supports her son who has schizophrenia and is unable to work. So many older people find themselves supporting their adult children for a variety of reasons, and that adds to their own economic insecurity. Her other son, Sian-Pierre, is limited in financial resources but does offer something priceless, which is encouraging his mother to do all of the things she never had time to do while raising children and documenting his mother’s story for the world to see.

I encourage you to watch this film and share with others. If you have seen it, I’d love to hear your thoughts.

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Having conversations about health care wishes more important than ever

Photo by LOGAN WEAVER on Unsplash

I hope you and your loved ones are able to reconnect in person this Memorial Day weekend. More opportunities to spend time with our elders abound with Father’s Day and July the 4th. Enjoy these special moments together, but also put this time to good use by having “the talk” about your loved one’s health care wishes.

Recently the University of Michigan published results of a poll that found COVID-19 had not prompted a significant increase in family discussions about what to do if one is struck with a severe illness or facing end-of-life care. If a deadly pandemic doesn’t prompt such discussions, then what can?

I understand how difficult these conversations can be. In my book, The Reluctant Caregiver, I discuss the challenges I had in initiating these discussions with my own parents. But I also talk about how my parents’ reluctance to make end-of-life care choices came with significant consequences for our family when they became ill. That is why I champion so passionately for everyone to have these talks and make these important health care decisions so your loved one’s wishes (and your own wishes) can be honored.

If you need assistance getting started, refer to the helpful resources section at the end of the University of Michigan Health Lab article. I also recommend Five Wishes. For those who have successfully had “the talk” with their loved ones, I’d love to hear your approach.

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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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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.

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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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Understanding care as part of infrastructure

We finally had infrastructure week in which President Biden’s infrastructure plan was unveiled to the public. One area of the ambitious plan has some people raising their eyebrows: “Solidify the infrastructure of our care economy.”

Traditionally infrastructure has referred to maintaining roads and bridges, along with other transit-oriented projects like airports and ports. Infrastructure is also often used to refer to essential services like water supply systems and power grids. All of these things are addressed in Biden’s plan. On the surface, caregiving may seem unrelated to how we typically define infrastructure. But make no mistake that care is just as essential to our wellbeing as the roads we use to travel and the electricity we use to power our homes.

As this editorial by Ai-Jen Poo and Heather McCullouch points out, we need to invest in the “systems of support for human capital” so that we can help people get back to work and revive the economy post-pandemic. Just as our roads need repair, so does the way we support citizens who are caring for family members. Biden’s plan focuses on the expansion of home and community care services, which is long overdue. So many caregivers are struggling right now, and the COVID-19 pandemic has demonstrated the need for additional support. Expanding services like childcare, elder care and care for those with disabilities would not only create new jobs, but would help family caregivers get back to work themselves.

Like most people, I want my taxpayer dollars to be spent in an efficient manner on essential programs. In my opinion, caregiving is just as essential as clean drinking water, electricity and roads. Our population, much like our physical infrastructure, is aging and in need of support. Care advocates like Poo have long championed viewing caregiving as an essential sector of the economy that deserves investment. I couldn’t agree more.

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