New year, new drug to treat Alzheimer’s approved by FDA

This week, the U.S. Food and Drug Administration approved a new drug to treat those in the early stages of Alzheimer’s disease. The approval of lecanemab was welcomed by the Alzheimer’s Association, who urged the Centers for Medicare & Medicaid Services to cover the cost for its members. Some members of the medical community have a more guarded view of this latest Alzheimer’s treatment, encouraging families to talk to their providers to understand the benefits and risks.

Here are some facts to know about lecanemab:

  • The drug, made by Eisai in collaboration with Biogen, is for those diagnosed with mild cognitive impairment or mild dementia stage of disease and confirmed presence of amyloid beta pathology, according to the FDA.
  • In a study cited by the FDA, those who took the drug experienced a statistically significant reduction in brain amyloid plaque versus those in the placebo group. While the connection between the presence of amyloid plaque in the brain and Alzheimer’s is still up for scientific debate, the study also showed that lecanemab resulted in moderately less decline on measures of cognition and function than taking a placebo.
  • There are potentially serious side effects that need to be considered before beginning the medication. In addition to infusion reactions, there were reports of brain swelling and bleeding (what the drugmakers call ARIA: amyloid related imaging abnormalities.) Three deaths of those in the study have been potentially linked to lecanemab.
  • The drug costs $26,500 per patient annually. As stated above, CMS has not approved payment for the new drug yet, meaning that only those who can afford to pay for it out of pocket will have access to the treatment for now. The Alzheimer’s Association has formally requested that CMS “remove the requirement that Medicare beneficiaries be enrolled in a research study in order to receive coverage of FDA-approved Alzheimer’s treatments.”
  • What you should ask your doctor: Before starting lecanemab, it is advisable to get genetic testing to determine whether the patient has the APOE4 gene, because the study showed that ARIA events were more common in those with that gene. Those on blood thinners should also talk to their doctor about increased risks.

A doctor interviewed by CNN said that lecanemab is another tool that he can add to his toolbox for treating Alzheimer’s disease. Families considering the drug for their loved one should understand that overall the drug’s benefits were modest and weigh that benefit to the potentially serious risks of taking the drug. For some families, the potential to slow down the cognitive decline of their loved ones will be worth that risk.

Just like with cancer, we all wish for a miracle drug or other form of treatment that would offer an instant and complete cure for Alzheimer’s. The reality is more like taking baby steps in the treatment development process, but those small steps can grow into better care and results over time.

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Wishing you a happy, healthy new year

Another year is in the books. As we look back on 2022, it’s easy to focus on the negative, but I hope you will cut yourself some slack and take time to celebrate what went well this year. Finding those good moments can be difficult when one is in a challenging caregiving situation. One suggestion that I’ve seen online is to get a jar and write on a slip of paper one good thing that happened each week. At the end of the year, the jar will be filled with highlights. If you are more digitally inclined you could keep a spreadsheet or use an app. It’s a simple way to make sure you don’t overlook your achievements.

My biggest achievement in 2022 was publishing my children’s book, Slow Dog. I began the year taking a course on writing for children, where I came up with the idea but waited until the summer to get serious about the project. If I had waited any longer, the book may never have existed as I got laid off from my job just two months after it was published. Timing is everything and sometimes the universe gives you a nudge just when you need it.

I hope 2023 will bring you good health and success in what matters to you.

Photo by Moritz Knöringer on Unsplash.

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Season’s Greetings

Christmas was a simple affair for my small family, but a holiday I remember fondly. I can still smell the cinnamon sticks featured in the holiday decoration in the far left of this family photo. I kept some of the brightly colored balls we used to decorate our small tree and they now decorate my tabletop tree, some 40 years later.

Wishing you and your loved ones a happy holiday. I hope you get to spend it with loved ones and that the deep freeze doesn’t disrupt your plans. Stay warm and safe!

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Marking 11 years since my father’s death

It has been 11 years since my father died. The weather is similar as it was on that day, a chilly rain, which in turn is typical Irish weather and reminds me of my father’s homeland.

The moment I received the call from my mother that my father was gone is forever embedded in my memory. The death of a parent is one of those world-stopping moments. It’s not something you get over, but the tide of life will continue to push you forward.

Witnessing the devastation of Alzheimer’s disease first-hand in my family prompted me to become an advocate for finding effective treatments and for better support of family caregivers. I join many others in those causes and I’m grateful for the connections I’ve made through the years.

Sharing your dementia caregiving stories is important and I hope you will continue to do so, whether it’s through a blog or other outlet. I know it’s not always easy to share such personal details, but putting a real face on a disease that has long been kept behind closed doors is essential in raising awareness and building public support for better treatments and services.

My father mattered and so do your loved ones. When those difficult anniversaries come, embrace the good memories and use the tough ones to inspire you to push for change.

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Adjusting holiday expectations



Caregivers can experience additional stress around the holidays on top of an already challenging routine. That stress is often triggered by expectations: from others and ourselves on how a holiday should be celebrated. Family traditions are something to be treasured, but when caring for an ill loved one, those traditions can quickly become burdens.

One of the more difficult aspects of family caregiving is adjusting one’s expectations when it comes to holiday celebrations. My family struggled with these changes as my father’s dementia progressed and again when my mother was recovering from cancer. When a loved one has dementia, they may not recognize that it’s a holiday. They may feel overwhelmed and extra disoriented if their routine is disrupted and extra people are in the home. Big family celebrations and travel may no longer be a good option.

It’s okay not to feel the joy that the season may bring others if you are going through a difficult time. But in order to avoid a completely miserable experience, it can help to adjust expectations. Focus on what matters most to you and the small, simple things that can bring you joy during the holidays. If there is something that is particularly meaningful, seek out the support you need to make that happen, whether it’s attending a religious service or a holiday-themed event.

While nice, the gifts or a fancy dinner isn’t what makes the holiday season special. It’s spending time with loved ones. The traditions may change, but the love remains.

Photo by Markus Spiske on Unsplash.






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Resources for family caregivers facing unemployment

Photo by Windows on Unsplash.

There have been a series of layoffs in the media world recently and I find myself once again without a job. The last time I joined the ranks of the unemployed was when I quit a new job to take care of my mother when she was diagnosed with colon cancer just six months after my father died. I am fortunate this time around to have received a severance package that will keep me afloat temporarily while I look for new opportunities.

So many people, especially family caregivers, don’t have such a safety net when they face a job loss. I wanted to share some lessons that I learned while I was an unemployed family caregiver and a few resources for family caregivers who find themselves in challenging financial circumstances.

Unemployment is one of life’s most stressful events, and it’s even more so for those who are the primary caregivers for a loved one. Before tackling the financial challenges, make sure you have the emotional support you need. High levels of sustained stress can trigger physical symptoms, so don’t ignore your own health needs during this difficult time.

Reassess your family budget and be prepared to make some difficult cuts. Are there any expenses that could be reduced or eliminated? With many family caregivers already living paycheck to paycheck, this might feel like an exercise in futility. But reviewing your budget is essential as it will help determine what financial assistance programs you may qualify for.

Take a thoughtful approach to your job search. Being unemployed can leave one feeling desperate and willing to take the first job offer that comes along, but that can end up backfiring. Unemployment provides an opportunity to reconsider your work priorities. List your job requirements, which might include a minimum salary level, remote work, flexible schedule, etc. Highlight which are must-haves and refine your job search to meet those requirements. For example, as my mother dealt with health complications that delayed her recovery, I turned to freelance work instead of looking for another full-time job. In that moment, family caregiving took precedent and I didn’t want to begin another full-time job only to have to quit again if my mother had further medical issues. The downside was that I had to utilize my parent’s limited financial resources to help pay my own bills during that period. When my mother became more medically stable, I began my full-time job search in earnest.

It won’t last forever: I spent over a year in what I called “severe underemployment” in which I picked up several low-paying freelance gigs to help pay the bills because I couldn’t find anything better at the time. Finally I found a job through a former colleague that turned out to be an ideal fit and allowed me to work with a fantastic team.

But be prepared for further hiccups: I learned this lesson the hard way: the universe isn’t going to give you a break because you are a caregiver. Home repairs, the car breaking down, or more substantial events like divorce and illness may occur. For example, as I’m still reeling from being laid off last month, I’m having to deal with a pricey veterinary bill because my dog is sick.

Funding resources for family caregivers:

AARP: Can I Get Paid to Be a Caregiver for a Family Member?

Family Caregiver Alliance: Family Caregiver Services by State

Caregiver Action Network: Financial and Legal Tools

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A thank you to caregivers

Photo by Priscilla Du Preez on Unsplash

Happy Thanksgiving to those who celebrate. In addition to food, family and football, today is a day to show gratitude.

I’d like to give thanks to all of the caregivers, from family members to those in the care workforce. I’d like to express gratitude especially to those caregivers who feel invisible, unappreciated and overworked. You matter and you deserve more support. There are many people working hard to implement changes to better support caregivers. It’s been an uphill battle and will continue to be so, but caregiver advocates, many of us former or current caregivers, are a tough and dedicated bunch.

Let the caregivers in your life know how much their efforts mean. Thank you to all of those who have supported me on my caregiving journey, from following this blog to buying my books and sending encouraging notes and comments.

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Celebrating Murphy’s 9th birthday and senior dogs everywhere

Friday was Murphy’s 9th birthday. Well, that’s the day we’ve chosen to celebrate. With rescue dogs, details like date of birth remain a mystery. Murphy could actually be 7 or 11 or any age in that range. Rescue animals reinforce the idea that age is just a number.

Murphy received yummy treats and a giant stuffed gator toy.

We have a gift to offer in return. Now through Nov. 22, the e-book version of Slow Dog is free! Please share with family and friends and maybe even give a copy as a gift over the holidays.

Thanks to all of you who have purchased a copy. Slow Dog is now an Amazon best seller!

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What employers can do to support family caregivers

In honor of National Family Caregivers Month, I wanted to highlight a key area of support that is critical for family caregivers, yet many suffer in silence.

This AARP blog post is directed at employers and discusses how supporting their employees who are also family caregivers is not charity, but a smart business practice.

Not only is it a smart business practice, but it’s going to be essential over the coming years. As our population ages, more and more people will become family caregivers. 7 in 10 workers currently have some caregiving duties, according to AARP. One in four is a millennial and a growing number are even younger. Family caregiving is not an “older worker” issue but an issue that any employee can face.

One of the few bright spots in the pandemic was that in certain sectors of the workforce, strides were made in workplace and scheduling flexibility. Employees who are also family caregivers appreciated the difference that flexibility made in their quality of life. Now employers are using their fears of an economic downturn to try and force workers back into a rigid schedule and workplace locations. Some employees are rebelling, but many family caregivers have no choice because caregiving is expensive and not covered by insurance.

When family caregivers reach a breaking point, they end up leaving the workforce. That’s a loss for everyone. Employers who are concerned about having enough staffing can take steps to ensure that they are creating a support environment for family caregivers. It’s common sense that workers who have enough support to manage their family caregiving duties will also be more productive at work and more likely to remain with a company that offers such support. That makes it a win-win for all involved.

Here are some steps employers should consider to support family caregivers:

  • Offer a flexibile schedule
  • Offer remote work
  • Offer caregiver support programs as part of the employee health care package
  • Paid family leave
  • Making sure hiring policies don’t discriminate against older workers or those with caregiving duties

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National Family Caregivers Month: Caregiving Happens

November is National Family Caregivers Month. This year’s theme per the Caregiver Action Network is #CaregivingHappens.

One can become a family caregiver in the blink of an eye. As the #CaregivingHappens campaign illustrates, people can face a family care crisis at any moment. One can be going through a routine day, at work or running errands, and receive the call or text that requires one to switch into caregiver mode.

By raising awareness of how many people are family caregivers and how you may encounter them throughout your day, it helps to highlight the resources they need and where there are gaps in support systems. Family caregivers must not remain invisible or taken for granted.

Do you find yourself facing a family caregiving situation for the first time? Check out these 8 Rules for New Caregivers compiled by AARP.

Through Nov. 15, take advantage of the AlzAuthors Caregiver Appreciation Month Book Sale & Giveaway.

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