Category Archives: Early alzheimer’s

The 10 things you must do after getting a dementia diagnosis.

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A walk through the park

It’s a shock to receive a dire prognosis. The day I listened to the doctor tell my husband that he had Alzheimer’s remains as one of those pivotal, earth-shaking moments that changed the course of my family’s life.

I’ve been hearing about more and more people, young and old, who are getting an Alzheimer’s diagnosis. It’s okay to cry, to throw a tantrum, and to feel numb. I remember calling my parents in disbelief and saying that my life wasn’t supposed to turn out this way. I was only 48 years old. I lost my spouse at 58. Now at 71, I look back and see how far I’ve come. Ten years of navigating the Alzheimer’s world, taking care of my husband, having him live in a memory care home, and seeing it through until the end, definitely took a toll on me — physically and emotionally. I still tear up when I think about it.

Whether you are the caregiver or the person who has dementia, the important thing to tell yourself is that you will get through this. But there are things you must do — starting today — to help yourself and your loved one(s).

  • Get in touch with your local Alzheimer’s Association. https://www.alz.org/ They are a godsend and do amazing work helping caregivers and people with dementia, and funding research. Check out their education programs such as “Managing Money: A Caregiver’s Guide to Finances” https://training.alz.org/products/4355/managing-money-a-caregivers-guide-to-finances?_gl=1*ec354i*_ga*MTkxNzM3NzMxOS4xNzAzMDk3NDQ5*_ga_9JTEWVX24V*MTcwMzA5NzQ0OC4xLjEuMTcwMzA5NzU4MS4xOC4wLjA. Or, “Living with Alzheimer’s: For People with Alzheimer’s Disease.”
  • Make an appointment with an elder attorney to figure out how to best plan for the future. (http://National Academy of Elder Law Attorneys). As soon as possible, designate who will be your powers of attorney, including durable general power of attorney and medical power of attorney. Put a lot of thought into it. You want to make sure the people you put your trust in are people you know will have your best interests and wishes in mind.
  • Consult with a professional about long-term care Medicaid to see if you qualify and what you might do to qualify if you currently don’t. Making these plans while you or your loved one are still able to is a great gift.
  • Enlist family members and neighbors who you can count on to be helpful. Designate someone as an emergency contact. Share your contact information with them and let them know you might need their help at some point.
  • Share your feelings with your closest friends and family. Don’t do what I did and try to keep the diagnosis a secret. That became a huge stressor for me.
  • Consider adult daycare programs that provide care, companionship, and supervision during the day. To find out more about centers where you live, contact your local aging information and assistance provider or Area Agency on Aging (AAA). For help connecting to these agencies, contact the Eldercare Locator at 1-800-677-1116 or https://eldercare.acl.gov.
    The National Adult Day Services Association is a good source for general information about adult daycare centers, programs, and associations. Call 1-877-745-1440 or visit http://www.nadsa.org.
  • Schedule a weekly walk with a friend or neighbor. The exercise and socialization will do you good.
  • Remove area rugs from the house and other items that may pose a fall risk. And make sure there is sufficient lighting in the house.
  • Do everything you can to reduce stress. Have a family meeting in which everyone can participate in the sharing of care. It’s important to divvy up tasks because there will be plenty of them in the long, fraught Alzheimer’s journey. Even if someone lives across the country, that person can share the responsibility of calling in prescription drugs, ordering food to be delivered, setting up appointments, etc.
  • Stay engaged in activities that you’ve always enjoyed. Dance, sing in a choir, play an instrument, garden, play a sport or cards. Alzheimer’s and other dementias are not contagious. Enjoy your life the best way you can by staying engaged in your favorite activities for as long as possible.

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Are you a good candidate for the new Alzheimer’s drug?

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Patient getting an IV infusion

On January 6, 2023, the FDA approved Leqembi, the first drug shown to slow Alzheimer’s. Leqembi (Lecanemab) is manufactured by the Japanese drugmaker Eisai and co-developed by Eisai and Biogen. The drug is for patients with mild or early-stage Alzheimer’s dementia.

How does it work?

Lecanemab is an antibody that removes sticky deposits of the protein amyloid beta from the brain. Leqembi (the brand name in the US) neutralizes the protein and marks it for clearance by the immune system before clumping occurs. The result is fewer beta-amyloid aggregates, or plaques, in the brain, potentially slowing the progress of the disease. Results from a late-stage study showed that the drug reduces the rate of cognitive decline in patients with early Alzheimer’s by 27%.

How is it given?

Leqembi is administered intravenously once every two weeks to patients who have a diagnosis of early or mild Alzheimer’s. During the first 14 weeks of taking the drug, patients must be closely monitored and get brain scans to make sure there is no brain swelling.

What are the risks?

Cerebral edema, also called ARIA-E, is the main risk. It involves the breakdown of the tight endothelial junctions of the blood-brain barrier and results in the accumulation of fluid in the brain. In general, common side effects of ARIA-E include easy bruising/bleeding, numbness/tingling of the hands/feet, unsteadiness, unexplained muscle weakness, vision changes, muscle joint pain, butterfly-shaped rash on the nose and cheeks, symptoms of heart failure (including shortness of breath, swelling ankles/feet, and unusual tiredness. Patients who have chest pain or seizures should get medical help immediately.

Biogen has issued these warnings and precautions: Leqembi can cause amyloid-related imaging abnormalities-edema (ARIA-E) and -hemosiderin deposition (ARIA-H). ARIA-E can be observed with MRI imaging as brain edema or sulcal effusions, and ARIA-H as microhemorrhage and superficial siderosis. ARIA is usually asymptomatic, although serious and life-threatening events, can occur including seizures. They are rare, however.

Reported symptoms associated with ARIA may include headache, confusion, visual changes, dizziness, nausea, and gait difficulty. Focal neurologic deficits may also occur. Symptoms associated with ARIA usually resolve over time.

In one study listed on Biogen’s news release (although it doesn’t say how many patients were treated) 3% of the patients who took the drug had symptomatic ARIA. It resolved itself in 80% of those patients. One patient had a brain hemorrhage after one treatment with the drug. https://investors.biogen.com/news-releases/news-release-details/fda-approves-leqembitm-lecanemab-irmb-under-accelerated-approval

The majority of ARIA-E radiographic events occurred early in treatment (within the first 7 doses), although ARIA can occur at any time and patients can have more than one episode. Other studies have reported that patients taking Leqembi who had brain hemorrhages died. This information is on the Biogen news release, also. https://investors.biogen.com/news-releases/news-release-details/fda-approves-leqembitm-lecanemab-irmb-under-accelerated-approval

Patients who have had a cerebral hemorrhage, aneurysm, brain lesions, stroke, brain contusion, or other brain and vascular pathologies are advised to not take the drug because there is a risk of a brain hemorrhage. Most doctors would not administer the drug in any of these cases.

How much does Leqembi cost?

A year’s treatment will cost about $26,500. Currently, there are few options outside of self-pay. Most of the patients who are potential candidates for the drug are on Medicare, and the Federal program’s coverage is very limited, so far. Patients who can pay out of pocket will be able to start the treatment if they are a good candidate for Leqembi and are able to find a doctor and health care system to work with.

So far, Soleo Health is the sole specialty pharmacy distributor for Leqembi. Soleo Health will distribute Leqembi to provider offices and infusion centers, and administer it across the company’s ambulatory infusion centers nationwide, including those operated by its provider division, Virtis Health. This division offers therapeutic and diagnostic services to people with complex diseases requiring special management.

The company reported that it operates more than 40 infusion centers across the U.S.

Patients treated with Leqembi also can receive support through Soleo Health’s Alzheimer’s disease Therapeutic Care Management Center, or TCMC, whose interdisciplinary staff includes physician specialists, nurse practitioners, registered nurses, therapy-care pharmacists, reimbursement specialists, and patient care ambassadors. The center is supported by the company’s nationwide specialty pharmacies, Soleo Health stated.

More information on Soleo Health’s services for Leqembi and Alzheimer’s disease is available by contacting its Alzheimer’s TCMC at 844-960-9090 or via email at alzheimers@soleohealth.com.

Is it worth the risk?

This is a tough question. If I were in the position of deciding whether to put my loved one on Leqembi I’d have to think long and hard if the risk of their having a brain bleed and possible hemorrhage is worth the possibility of living six months, nine months, or a year or two longer without dementia. On the other hand, it’s too early to know just how beneficial the drug will be. I’d probably not be first in line and would wait a bit to see how much Leqembi is helping and whether Medicare is going to cover at least part of the cost.

Maybe Leqembi will turn out to be the silver bullet we’ve been waiting for, and will totally clear out the amyloid plaques. Now wouldn’t that be fantastic?!

Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”–winner of the 2018 Book Excellence Award in self-help– in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.