Tag Archives: alzheimers

Happy Father’s Day

Thinking of Dad today and what it would be like to take a long walk in the park with him and discuss all of the troubles happening in the world right now.

Hope you get to spend quality time on this Father’s Day with your fathers or those who serve as father figures in your life.

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Remembering Wendy Mitchell, who shared her dementia experience with candor, compassion

I was saddened to learn that Wendy Mitchell, who so generously and insightfully shared her experience living with dementia through her blog and books, died this week. However, I take solace in knowing that Mitchell left this world in a way that honored the agency she still had over her own life.

I mostly knew Mitchell through her blog, Which me am I today? The blog’s title captures the dementia experience so well. I enjoyed the photos she shared from her sunrise walks, which included gorgeous skies as well as a variety of birds and other animals. Mitchell was dedicated to her nature walks, writing that the “miracle of nature would thin the glue in my head and bring me alive again.” Mitchell shared the full spectrum of the dementia experience, demonstrating that memory impairment does not prevent those with dementia from continuing to feel a wide range of emotions, maintaining a sense of humor, and achieving new milestones.

At the same time, Mitchell was clear-eyed about what the end of the dementia journey looks like for many people, and she was determined to not have her life end that way. She had been making her end of life plans for awhile, consulting with family and getting their blessing. Because assisted dying isn’t a legal option in the UK, Mitchell planned to travel to Switzerland and utilize the services available at Dignitas. But a recent fall in which she spent a week in the hospital derailed those plans. With her mobility limited, Mitchell chose to stop eating and drinking. You can read Mitchell’s final blog post which goes into detail about her decision process. I encourage you to read it, even if you disagree with her choice.

For the record, I support assisted dying and would consider that option for myself. I think it’s a decision for an individual, in consultation with family members, medical providers and spiritual advisers to make, NOT government officials.

Mitchell shared on her blog what she hoped to accomplish by sharing her dementia journey: “What I want is not sympathy. What I want is simply to raise awareness.” Mission accomplished.

Mitchell was a cherished member of AlzAuthors, read their lovely tribute.

Illustration by Microsoft Copilot.

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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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Filed under Awareness & Activism