Tag Archives: Alzheimer’s

How your caregiving experience can be a gift to others

My father and Aunt Peggy on her wedding day, 1956.

I received a letter from my Uncle Jim this week, updating me on how my Aunt Peggy is doing. She is my father’s youngest sister and has dementia. My father’s side of the family has been decimated by the disease and Peggy has been living with the disease for years. Jim has been an amazing caregiver to her and patient in navigating the choppy waves the disease presents. She is doing as well as can be expected, and is able to take advantage of resources offered by Australia’s stellar healthcare system.

A few years ago, I sent Jim a copy of Chicken Soup for the Soul: Living with Alzheimer’s and other Dementias. A story of mine about my father, French Toast, is included in the collection, but I also thought Jim might appreciate the wealth of information that was shared by the dozens of dementia caregivers who contributed to the collection. In his recent letter, he mentioned the book and the information I shared about my father’s struggles with swallowing in the end stage of the disease. He thanked me for sharing the information and how it had been helpful while caring for Peggy.

Caregiving can feel very isolating. When caring for someone with dementia, that isolation can feel even greater, as friends and sometimes even other family members maintain a distance, not sure how to help or struggling to accept the diagnosis. But in those moments you might be learning something that, when shared with others, can make their caregiving lives easier.

Don’t be afraid to share the lessons you have learned on your caregiving journey. Knowledge is a precious gift and what we learn from fellow caregivers can be more meaningful than what we learn in books.

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Preserving Memories With a Loved One—Questions to Ask Before it’s Too Late — The Diary of An Alzheimer’s Caregiver

Most of us think we have more time than we actually do … So many times, after my mom passed, I wished I’d asked her about this person or that event. – Stacy Monson

So true! The Memories Project began as a way to honor my father and the further I went in documenting my father’s stories, the more I realized I was missing important details. That is why I urge everyone to ask your loved ones to recount their life stories and anything else they want to share. It’s so easy now, literally a tap on a smartphone button, and you can record these precious memories.

Read the blog post along with a great list of questions to get you started by clicking the link below:

Preserving Memories With a Loved One—Questions to Ask Before it’s Too Late — The Diary of An Alzheimer’s Caregiver

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Sharing our stories as family caregivers

When we are actively caregiving, it can sometimes feel as no one cares or no one understands what we are going through. As a former family caregiver, I now dedicate my time to not only telling my caregiving story, but learning about other caregiver’s journeys. This week I was blessed with two opportunities to share my story.

I’m a proud member of AlzAuthors, and this week I am the featured guest on the group’s excellent podcast series, Untangling Alzheimer’s & Dementia. If you are looking for a support as a caregiver, I encourage you to check out the podcast as well as the bookstore which offers books about dementia covering a wide range of topics and genres. I’m honored to have my book, The Reluctant Caregiver, included in this collection.

I also did an interview that is featured on Bella’s Blog, part of the Joe & Bella’s retail website. The company describes itself as “a one-stop shopping site for older adults and those who care for them.” The store sells everything from adaptive clothing to safety and mobility items and bathing supplies, all thoughtfully curated by aging and caregiving experts. The first of my two-part interview was posted this week. I discuss the details surrounding my father’s dementia journey and how it impacted the entire family. Use the discount code “Joy” to get 10% off your first purchase at Joe & Bella.

It’s important that family caregivers hear stories from others who have gone through a similar situation. It helps one feel less isolated and can help empower those who are struggling. I’m always grateful to share my caregiving story, but the most rewarding part for me is connecting with others through their own caregiving experiences. We have so much to learn from each other.

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NYT report shines light on dangerous drugging of nursing home residents

A recent New York Times investigation may be a revelation to some, but not to family caregivers who have loved ones in nursing homes, especially memory care centers. The investigation found that at least 21 percent of nursing home residents are on antipsychotic drugs. “Chemical restraints” have become a convenient method to reduce the hands-on care needed for those with dementia in nursing homes which are chronically understaffed. Savvy (and/or devious) nursing home operators and doctors have found workarounds to circumvent the weak government regulations that attempt to curb this dangerous practice.

This is an issue near and dear to my heart. I’ve written about my father’s experience in a memory care center during the last year of his life. He was given Risperidone, a drug typically given to adolescents with schizophrenia. It turned my father into a zombie and made him unsteady, causing several falls which resulted in ER visits. To add insult to injury, my family was left with owing thousands of dollars for medications used to inappropriately sedate my father.

Here is what I wrote about my dad’s experience with the drug:

I remember the indifferent attitude the doctor at the local hospital had when I questioned the use of Risperdal, which was already controversial even while my dad was still alive. The doctor just shrugged his shoulders and said they had to continue prescribing what the doctor from the nursing home had ordered. He asked me if I knew what it was for and I responded “to make patients like zombies so they’re easier for the nursing home staff to deal with” and the doctor agreed with a laugh. I did not find it funny at all.

Johnson & Johnson paid over $2 billion in fines to settle charges levied by the government that they promoted off-label use of the drug to elderly patients with dementia and even provided kickbacks to doctors and nursing home operators. The massive fine didn’t hinder the practice. The drugs of choice are now Haldol and Depakote, according to the New York Times investigation. Doctors are adding a diagnosis of schizophrenia to nursing home residents with dementia to get around government regulations. Haldol is used to treat schizophrenia and therefore doesn’t have to be included in the mandatory reporting of antipsychotic use that nursing homes must provide to the government.

The underlying problem to the overmedicating of nursing home residents with dementia is staffing shortages. If facilities were adequately staffed and had special training in how to care for those with dementia, the need to sedate residents would be alleviated. Families aren’t going bankrupt just so there loved ones can be turned into zombies through chemical restraints. Nursing home operators get access to medications that a family doctor would likely balk out if a family caregiver asked for it to manage their loved one at home. The government’s response continues to be insufficient.

My advice is that if you have a loved one in a memory care center, review their medication list on a monthly basis. If you are not comfortable with your loved one being on a particular medication or you witness alarming changes in your loved one’s physical or mental state, speak up. If you are looking to move your loved one with dementia into a memory care center, ask about their use of off-label medications. Ask that they seek your permission before prescribing such drugs. We must advocate for our loved ones to be treated humanely and not as an experiment to sedate into submission.

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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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