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

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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

10 ways for caregivers to reduce holiday stress

Happy holidays! Thanksgiving is almost here! It’s almost inevitable that most of us feel more stressed during the holiday season. There’s always so much to do if you’re planning to get together with friends and family. And for those who are grieving or alone, the stress can be debilitating. If you’re a caregiver, you’re undoubtedly even more stressed.

The most important thing is to take care of YOU. If you get stressed and exhibit anxiety, those around you are going to feel it. It becomes a vicious cycle. You get stressed, and then the person you care for may get irritable, nervous, or anxious.

Make this your mantra: eat healthily, drink water, take a daily walk, and sleep well. It sounds easy, but how do you do that when your time is limited and you feel stretched in every which way.

Or how do you take care of yourself when you’re so depressed it’s hard to get out of bed? (This is a huge topic that I won’t address here, but you might want to read: Have you tried any of these natural ways to combat depression? https://barbracohn.2018/10/03/have-you-tried-any-of-these-natural-ways-to-combat-depression/

  1. Make a pot of soup that will last several days. Lentil, split pea, vegetable, chicken, butternut squash, and tomato soups are chockful of goodness. See below for a yummy recipe.
  2. Do you really need to drink 8 glasses of water each day? According to an article that recently appeared in the New York Times, the answer is no. It depends on a lot of things: how big you are, how active you are, and how much liquid you’re getting through foods and other drinks such as tea and coffee. I had always thought that caffeinated tea and coffee dehydrate you. But according to this article they don’t. Juicy fruits such as oranges, melons, and pears (not to mention summer fruits), contribute water to your total intake. Just make sure that you’re drinking enough so that you don’t get to the point where you feel thirsty or where your lips feel dry.
  3. Exercise is vital to overall health and stress reduction. Whether you live in a cold or hot climate, dress appropriately and find at least 15 minutes a day to get outside and walk.
  4. Show your care partner (the person you care for) a bit of extra attention if you’re able to. Take them for a drive to see holiday lights. Have an afternoon tea in a charming café. Visit your care partner’s best friend, or have them come for a visit. Buy a new CD of their favorite music and play it for them. Light candles at dinnertime. Have them help you with decorations, if possible.
  5. Plan a visit from a music therapist or animal-assisted (AAT)therapist, or find out where you might find them visiting facilities.
  6. Aromatherapy can be a resource of comfort to you and your care partner by providing an easy, natural way to reduce stress and anxiety and uplift mood. To make sure you are buying a pure essential oil and not synthetic fragrance oil, look for the botanical name of the plant and the phrase “pure essential oil” on the label. Essential oils can be used in a wide variety of ways, but the most common methods are by inhalation or topical use, such as lotion, body oil, or in a bath. My favorite method which I used for my husband is an electric micro-mist diffuser, and available by mail order or at health food stores. These disperse essential oils into the air in a cool mist or can be gently warmed in a candle-heated aroma lamp that releases the aroma into the air. Another easy way is to add 30-40 drops of essential oils to a 4-ounce water spritz bottle. Favorite oils for reducing stress and anxiety include: lavender, Holy basil, clary sage, geranium, rose, and ylang ylang. Citrus oils uplift the mind and emotions, relieve stress and anxiety, and are useful for appetite support: bergamot, grapefruit, lemon, and orange.
  7. Making art can help you regain a sense of balance. If you’re feeling out of control, and are inclined to create art, set aside a table just for art and make it sacred. Gather your materials and have them easily accessible so that the space is prepared for you to focus on the “now” without a lot of distraction. It’s amazing how making art can melt stress once you get into the creative zone. The same goes for playing an instrument. It doesn’t matter what is going on in the world or how I feel, when I sit down at the piano, everything becomes part of the past and I’m able to enjoy the moment. It actually becomes a meditation.
  8. Speaking of meditation, the buzzword these days is “mindfulness.” There are numerous apps and classes that can teach you how to stay present and act with kindness and compassion. You can also take a meditation class such as Transcendental Meditation, where you learn how to meditate twice a day for 20 minutes. TM has been proven to reduce blood pressure, and help the body recharge by reducing stress. It’s easy and anyone who can think a thought can do it.
  9. Keep it simple. You don’t have to make an elaborate feast (unless you’re a cook and love to do that) to make the holidays special. If you want to make it really easy on yourself, order a meal for the number of people at your table. Grocery stores like Whole Foods provide dinners that are yummy and healthy (and yes, a little expensive). Or make the essentials and buy a pie.
  10. This holiday season stop and smell the flavors and enjoy the little things: a walk in the woods, a new baby’s smile, a toddler’s romp, a new sweater, or a pair of socks. Get out the photo albums and reminisce. Watch funny YouTube videos of animals and children. Watch a comedy together. Borrow your neighbor’s dog to take on a walk. Walk in the snow (please wear treaded boots so you don’t fall). Enjoy the moment because time passes quickly and what’s here this year may not be here next year.

While most families are hoping to get together for the first time in a couple of years due to COVID, it’s important to keep abreast of the latest health and safety directives in your area. The number of COVID cases is on the rise again. Please wear a mask when flying, traveling by train or bus, and when you’re in crowded places such as a grocery store. Get a COVID booster and seasonal flu shot. If you feel sick, please stay home! There’s nothing like exposing your loved ones to an illness and having them get sick to make you feel guilty and everyone stressed.

One of my favorite soup recipes to enjoy throughout the winter

Pasta y Fagioli—a one-pot meal, 4 servings

  • 2 tbsp olive oil
  • 1 large onion, chopped
  • 3 carrots cut into 1/4 inch pieces
  • 2 stalks of celery, cut into 1/4-inch pieces
  • 1 leek, peeled and cut into 1/4-inch pieces (discard the top, tough stalk or keep to use when making vegetable broth)
  • 1 zucchini, cut into 1/4-inch pieces
  • 1 yellow squash, cut into 1/4-inch pieces
  • 2 large garlic cloves, finely chopped
  • Herbs of your choice: basil or thyme
  • 1 28-ounce can of chopped tomatoes
  • 1 quart of stock –vegetable or chicken. Add water if needed to cover the veggies
  • 2 cans of white beans (navy, butter, or cannellini)
  • 8 oz of pasta of your choice
  • salt and pepper to taste
  • Grated parmesan cheese

Heat the oil in a soup pot on medium. Add the onion and cook for about 5 mins., occasionally stirring. Add the other vegetables, until they begin to soften, about 8 minutes. Stir in the garlic, and cook for 2 minutes. Add the broth and tomatoes and their juice.

Separately, cook the amount of pasta you want to put in the soup. Keep the pasta separate or it will turn to mush. Add a serving of pasta to the soup and top with grated cheese. Serve with bread and salad. Delicious!

Happy Thanksgiving!

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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

How would you rate yourself as a caregiver?

It’s been 12 years since my husband passed away from younger-onset Alzheimer’s disease. Even now ask myself if I could have done more for him. I still have guilt, even though I saw a therapist for the last three years of his life who said to me, “If a friend were telling you what you’re telling me, what would you say to her?”

I’d tell her, “You’re doing the best that you can.” My therapist nodded his head and reminded me that I was doing the very best that I knew how, and physically was able to.

I was pragmatic and philosophical about my husband’s Alzheimer’s. I was really good about taking him to his doctor appointments and utilizing every complementary healing modality that was available, such as acupuncture, massage, and even some pretty far-out techniques which I don’t even remember the name of. We hired gentle-touch practitioners, psychic healers, and astrologers. You name it. We tried them all. I even bought an expensive stress-reducing massage bed that emits infrared light and has jade balls that massage the spine by riding from the neck to the ankles.

Did these modalities help? I think so. They certainly helped reduce the stress that we both felt. Did they delay the symptoms of Alzheimer’s? Probably not, but my husband outlived his prognosis by two years, according to his doctor, so I have to believe that a good diet, nutritional supplements, and the support of loving friends and family played a huge role.

Yet, still, I think there were a few things I could have done better. I could have worked harder to acknowledge Morris’s reality. By that I mean I could have done a better job of redirecting him when he got anxious or worried. I realize that it’s easier to say this now, more than a decade after he died. But I wish I had more skill and practice in switching the topic from his obsession about having his car keys taken away, or his discomfort when I’d take him for a ride in the car and he’d complain about every bump in the road.

I wish I had shown him more affection by holding his hand or rubbing his shoulders. I actually told him one day at the breakfast table that I could not have an intimate physical relationship with him anymore because I felt more like his mother than his wife. This is a hard thing for me to admit, and I feel so sad that I said this to him. The reason I’m writing it here is to tell you that you don’t have to be 100% honest with what you express to the loved one you are caring for. It’s okay to withhold things because if your loved one has dementia s/he is already having difficulties processing normal everyday activities. There’s no need to get into a deep philosophical discussion or one in which you have to express what you are going through. Create a time and space for that to happen with a dear friend or a therapist.

If you feel guilty or are unsure of whether you’re doing enough ask yourself these questions:

  • Do you feel that you aren’t doing enough for your care recipient? Make a list of everything you do for the person you care for. Preparing a meal, shopping for groceries, driving to appointments, making a bed, doing laundry, making a phone call, sitting next to the person, even just giving a hug: the list adds up! You are doing a lot more than you think you are!
  • Are you guilty about your negative feelings? Resentment, anger, and grief are all normal. They are just feelings and they aren’t wrong. Feelings are complicated and you are entitled to them. You probably love the person you are caring for but the time you spend is precious and you might rather be outside gardening or hiking or traveling.
  • Do you feel bad about taking time for yourself? Don’t! If you don’t stay well, including eating and sleeping well, there’s a good chance you will get sick. And that is not going to help anyone! Please take some time for yourself. If you are a full-time caregiver, at least take a 15-minute walk every day. Get some respite care. Your local county social services department can most likely provide you with some options for help.
  • Are you feeling inadequate at a caregiver? The Alzheimer’s Association offers free classes on caregiving. “The Savvy Caregiver” is an excellent five-session class for family caregivers. It helps caregivers better understand the changes their loved ones are experiencing, and how to best provide individualized care for their loved ones throughout the progression of Alzheimer’s or dementia.
  • Tips for easing guilt
  • Ask yourself what is bothering you. Talk with a close friend who will not judge you, or with a professional therapist, clergyperson, spiritual teacher, or intuitive guide. Talk about your guilt until you feel your body release the tension that is stored in your muscles and cells.
  • Remember that you are human and not perfect. No one expects you to perform with absolute clarity and grace all the time.
  • You cannot control everything all the time. You are doing the best that you can with the information, strength, and inner resources that you have.
  • Have an “empty chair” dialogue by speaking out loud and pretending that your care partner is in the chair next to you. Express your feelings openly and wholeheartedly. Ask for forgiveness if you feel that you wronged your loved one in any way.
  • Write down your thoughts and feelings. Journaling is a wonderful, inexpensive way to release your concerns and worries on paper. It’s available when your therapist and best friend are not, and you can do it anywhere at your leisure.
  • Strong feelings of guilt, remorse, and grief will diminish over time.  If they continue to haunt you, seek professional help.

I’m still working–on forgiving myself for not being the perfect caregiver. I’m not overwhelmed by it, and I’ve recreated a wonderful, fulfilling life for myself. But I remember my therapist’s words, “You’re doing the best that you can.” I know I did, and that just has to be good enough.

The Alzheimer’s Association offers programs especially designed to benefit people caring for a family member or friend living with dementia by providing more understanding and tools to help navigate the journey. For more information contact 800-272-3900, alz.org.

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: TheCaregiver’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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Cataract surgery reduces dementia risk

It seems that almost all my friends are needing cataract surgery. And that’s probably a good thing. Because studies are indicating that cataracts increase your risk of developing dementia.

What is cataract surgery?

Nine in ten people develop cataracts by the time they’re 65, and an estimated 2 million (mostly older) Americans get cataract surgery every year.

A cataract is an opacification or clouding of the natural lens of the eye. The surgery involves the removal of the lens and replacement with an intraocular lens or artificial replacement for the lens of your eye. It’s considered one of the safest, most effective, and most common procedures performed today.

Research shows a link between vision loss and dementia

A recent study in JAMA Internal Medicine analyzed the relationship between cataract surgery and the risk of developing dementia. The researchers discovered that people who had cataract surgery had a 29 percent lower risk of developing dementia when compared to people who didn’t have the surgery. https://pubmed.ncbi.nlm.nih.gov/34870676/

The research also found that glaucoma did not affect the risk of dementia.

How does cataract removal protect brain health?

  • Cataracts can reduce vision, which may lead to depression. Depression is a risk factor for dementia.
  • One study found that the integrity of the eye is essential for the structure and function of the brain. “Cataract patients often present with accelerated age-related decreases in brain function, but the underlying mechanisms are still unclear.” https://pubmed.ncbi.nlm.nih.gov/29548900/ Vision impairment can lead to reduced sensory input to the brain, and this leads to less brain stimulation and loss of brain function.
  • People who have vision loss may be less engaged in physical activity and social interaction. This can lead to an increased risk of dementia.

Ways to help prevent cataracts

  • Eat a Mediterranean-based diet including foods that are high in vitamin C, vitamin E, lutein and zeaxanthin. Low levels of lutein and zeaxanthin are associated with cataracts, whereas higher levels help to reduce the risk of developing cataracts.
  • Lutein and zeaxanthin are carotenoids and are found in spinach, Swiss chard, kale, parsley, pistachios, green peas, egg yolks, sweet corn, and red grapes. They are best absorbed when eaten with a healthy fat such as olive oil or avocado.
  • Wear sunglasses to protect your eyes from UV rays.
  • Quit smoking. Smoking increases the free radicals superoxide and hydroxyl radicals that damage the lipids and proteins in the eyes. This causes deposits to form on the lens of the eyes and leads to cataract formation.
  • Maintain healthy blood sugar levels. People with diabetes are more likely to develop cataracts.
  • Restrict consumption of alcohol, which can increase the risk of cataracts by increasing the body’s inflammatory response, free radical production in the eyes, and dehydration. Dehydration affects the proteins in the lens of your eyes.
  • Get regular eye exams.

Get more bang for your buck

If your eye doctor is suggesting that you have surgery to remove cataracts, do it sooner than later. Because cataract surgery will not only sharpen your vision, it may very well sharpen your mind.

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: TheCaregiver’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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

20 ways to make Zooming with a person who has dementia more meaningful

It’s often difficult to communicate in person with someone who has dementia. If that person lives at a distance, it’s even harder. Using zoom is a great option, especially if someone can assist with the mechanics. But if that person is hard of hearing, seeing, or has aphasia communicating on zoom becomes even more challenging.

Here are some ways that you can connect via zoom so that you feel less guilty about not being there or not being able to communicate the way you wish you could.

Even if your conversation is limited to a minute or two, the person on the other end will appreciate your taking the time to check in with them or to just say “hello.” Your loved one may not be able to speak or hear you, but just seeing your face will provide a bit of comfort.

  • Plan to eat together. Ask the person caring for your loved one to prepare something that you both especially like. Eat together and talk about the flavors, colors, and texture. This may be helpful if your loved one is having eating difficulties. Or, indulge in a special treat such as ice cream. This can be an opportunity to reminisce about going out for ice cream. What are your favorite flavors and where is/was your favorite ice cream parlor?
  • Hold up meaningful photos to the zoom screen. Don’t use words like “remember when. . . .” Instead, talk about the people in the photos and the special events where they were taken. Or talk about what those people are doing now, what they’ve done or where they live, etc.
  • Include your pet, if you have one. Dogs and cats contribute feelings of warmth and may elicit memories that your loved one had if they cared for a pet.
  • If your loved one is still engaged in a hobby such as knitting, fishing, quilting, or woodworking, show some of the items that they used or still use. If they painted a picture that you’ve hung in your house, display it on the screen and talk about how much you like it and why etc. If you both knit, plan a knitting session.
  • Does your loved one enjoy gardening? Bring in a pot of petunias or whatever you have growing in the garden, and talk about the colors, the smells, what you enjoy about gardening, and what they have enjoyed.
  • Do you have a hummingbird feeder hanging on the back porch? Show it on your zoom screen if you have a laptop or tablet.
  • If your loved one played an instrument, or if you play an instrument, use the time to play a recording or the actual instrument.
  • Children love to perform, especially on zoom. Have your child dance, sing or do acrobatics for your loved one. If you don’t have any kids, borrow a neighbor’s. It’ll bring cheer to everyone.
  • If your loved one can hear well, maybe they would enjoy being read to. A poem, an aphorism, a joke, a proverb, a short tale–or even a list of the funny things that kids say–may evoke a smile or chuckle.
  • Do you and your loved one share a love for fashion and jewelry? If they’ve gifted you jewelry, wear it while you’re on zoom and talk about how much you’ve appreciated it throughout the years.
  • If you both like to draw or paint, arrange with the caregiver to provide your loved one with the materials to create something while you’re on zoom together. Choose to create your own piece or not.
  • If you have a second digital device, take your loved one on a tour of a country, city, or art museum.
  • Did your loved one enjoy birding or identifying wildflowers? Find an app on your phone or tablet for birds, flowers, etc., and hold it up to the zoom screen. Some of these apps even contain bird songs.
  • Talk about a trip that you’re planning or have recently gone on. Describe it with sensory images using colors, smells, and sounds. What was the highlight of the trip?
  • Do some simple chair exercises together.
  • Find a copy of their local or hometown newspaper and pick out an event or interesting news item to share.
  • It’s been suggested that instead of looking straight into the camera, it’s better to turn your body sideways to the screen into a supportive stance. Supposedly it opens the other person’s visual field because you’re no longer the dominating object on their screen, and also reduces the otherwise excessive amount of eye contact.https://news.stanford.edu/2021/02/23/four-causes-zoom-fatigue-solutions/
  • Repeat or rephrase the last few words that your loved one says. Their last words can help them keep a fluid conversation. This lets the other person know that you heard what they were saying and helps calm them if they’re in distress.
  • Offer compliments freely. “I like your hair” “You look so good today.” “You’ve always been so good at . . . .” This helps establish the connection and lets the person know they are appreciated.
  • Pray together if your loved one would enjoy that.

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: TheCaregiver’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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Traveling with someone who has dementia (this article first appeared in AAA’s EnCompass magazine)

https://living.acg.aaa.com/travel/15-tips-traveling-someone-dementia

Portrait of a senior couple at sea at sunset

My husband, Morris, loved to travel so much that he memorized plane and train schedules for fun. Until he developed Alzheimer’s, that is. When he was unable to convert dollars into the local currency on our 25th anniversary trip through France and Spain, I realized something was very wrong. He followed me like a puppy dog around Barcelona and was afraid to hop on the subway. I was forced to read maps (not something I’m great at) and choose where to go and what to see, without any input. It was like traveling with a young child. My suspicion that he had Alzheimer’s was confirmed when we returned home.

That winter we went to an all-inclusive resort on the Riviera Maya, south of Cancun, to escape from our new reality. The last-minute get-away helped alleviate the stress of worrying about the future. But I couldn’t totally relax because I quickly learned that you can’t trust someone with dementia to find their way back to an unfamiliar hotel room.

Since he had been an avid lap-pool swimmer, I later took Morris on a quick trip to Glenwood Springs for a soak in the mineral pools. I was concerned that he would have trouble getting dressed in the locker room without my help. My first question to the staff was, “Do you have a family changing room?”

They actually have two, complete with toilet, sink, shower, and fold-down bench. There are also three ADA (American Disabilities Act) accessible rooms in the new restroom facility near the kid’s area at the west end of the property. 

Changing was easy. But Morris was afraid to get into the pool. I later learned that people with Alzheimer’s have difficulty with depth perception and peripheral vision. Their eyes might be healthy, but changes in the brain affect the way they process visual information and alters their perception of the world and how they understand it.

I wish I had known this before our family took a trip to Arches National Park. Morris was terrified as we slowly made our way through the Devil’s Garden. And I became impatient with him, not realizing that he probably felt as though he was about to fall off a cliff.

The good news is that you can travel with someone who has dementia. It’s a bit of a challenge, but it’s doable in the early stages. It just takes more planning, patience, and time. Our family took several fun trips to Hawaii with Morris after his diagnosis. They were even more special than our previous trips because we wanted to enjoy every precious moment together.

20 Tips for traveling with someone with dementia

It’s inevitable that routines will be disrupted while traveling. Here’s how to make it easier on yourself and the person you are caring for.

  1. Don’t leave home without an ID bracelet or wearable GPS unit that can’t be easily removed by your traveling companion. List the person’s name and your cell number on the ID. If the person can still use a cell phone, make sure your number is the emergency contact.
  2. Keep a current photo of your care recipient with you in case you get separated. And carry a laminated card that briefly explains that they have dementia. Showing this to service people helps to avoid frustration, impatience, confusion, and embarrassment.
  3. Consider staying in a hotel rather than with relatives who may be alarmed by or unfamiliar with dementia symptoms. If there’s any sort of drama in the household, this will only add to everyone’s confusion and frustration.
  4. Let the hotel staff know ahead of time of special needs. Ask for a vase of flowers to be placed in your room. They always seem to freshen up the environment.
  5. Bring an aromatherapy diffuser that plugs into the wall. Aromatherapy works like magic to allay anxiety. Put a few drops of lavender oil, sage, geranium, rose, or ylang ylang oil on a pillowcase, or handkerchief that you can stick in a shirt pocket, or in a diffuser. Try out different blends before your trip to see what your traveling companion prefers. Essential oils and diffusers are available at natural food stores and online.
  6. Try to avoid noisy, crowded situations that might provoke anxiety, fear, or confusion. Instead, visit tranquil environments such as art museums and galleries, botanical gardens, and special interest museums. If you’re meeting friends or family, picnic in a beautiful park. If children are included, choose a park with a playground.
  7. Have afternoon tea, cookies, and fruit in your hotel room, and allow time for a nap.
  8. Ice cream treats always work when the going gets rough!
  9. If you’re flying, book a direct flight and limit flight time to under four hours.
  10. Pack everything in a light backpack to carry on board, if possible, to avoid waiting at baggage claim. Carry documents and medications with you.
  11. Leave the lace-up shoes at home. Velcro shoes or slip-on shoes are a must.
  12. Most airports have a seating area a few feet from where you pick up your belongings, where you can put yourselves back together.
  13. Just beyond that is a handicapped seating area where you can hitch a ride on an electric cart that brings you to your gate.
  14. Use the family restrooms, rather than the public restrooms. Your traveling companion will appreciate the help.
  15. Take advantage of early boarding.
  16. Bring your own food, snacks, and water. Make sure you don’t bring anything that qualifies as a liquid. That includes yogurt.
  17. Let flight attendants know about special needs. They are more than willing to help.
  18. Don’t worry about your companion getting locked inside the cabin restroom. It is possible to open the door from the outside.
  19. Bring an iPad or headphones for entertainment and relaxation.
  20. Sit back and try to relax!

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: TheCaregiver’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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Aging and Memory Loss: What’s normal, what’s not, and how to seek help (this article appeared in the Daily Camera’s Aging at Altitude Special Section, spring 2022)

Most of us have had “senior moments” where we’ve run into a friend and momentarily forget their name. Or we search the house for eyeglasses that are perched on our head. Or we walk in circles trying to locate our car in the mall parking lot. Those forgetful moments are fairly typical of being a member of the 21st century with a headful of thoughts and responsibilities.

Putting the car keys in the refrigerator might be something you do if you’re distracted, but storing a dozen cans of pineapple in the dishwasher, or forgetting how to drive home are not normal memory slips. These types of forgetfulness could be a sign of cognitive impairment or a dementia. But the latest research is showing that if you treat early signs of mental decline, you can slow down and possibly reverse cognitive decline.

Ilene Naomi Rusk, Ph.D. is a neuropsychologist, functional brain health coach, and director of The Healthy Brain Program at the Brain and Behavior Clinic (2523 Broadway #200, Boulder, CO, 303-938-9244). Dr. Rusk acts like a detective to fully understand the root causes of a person’s psychological and brain health issues. Then she works with the patient and a functional medicine team with personalized diagnostics, and treatment or interventions, from brain training to nutrition guidance.

“It’s good for everyone to have baseline neuropsychological testing in mid-life even if you have no memory issues,” says Rusk. Most people think cognition is memory, but it’s much more than that. It’s memory, learning, attention and focus, visual and spatial skills, and how we absorb information, retain it and then share it. Cognition is also how we process things visually, auditorily, and spatially.”

There are different categories of cognitive health versus cognitive impairment that can clue me into whether or not someone is headed towards dementia, says Rusk.

“Subjective Cognitive Impairment (SCI) is when you notice a change in your cognition and think ‘I’m a little different than I used to be’, but other people can’t tell and it wouldn’t show up on a memory test.

“The next category is Mild Cognitive Impairment (MCI). This is when you notice changes in your thinking and people around you may or may not notice changes. With MCI you might also have some challenges on neuropsychological tests that show empirical changes. This is a staging system,” says Rusk. “With MCI there’s a great opportunity to intervene, and we want to intervene as early as possible because once you have Mild Cognitive Impairment it’s easier to slip into dementia,” she adds.

The best thing is to tell your doctor if you have concerns and then go to see someone to get properly assessed.

“I recommend that people go directly to a neuropsychologist or neurologist after they’ve spoken to their family physician to look for root causes. There are so many prevention strategies and a new functional medicine methodology to approach cognitive decline. Functional Medicine practitioners look at blood sugar control, blood pressure, gut health, latent, mold, infections, inflammatory markers, stress, sleep patterns, chronic loneliness, and trauma. These are all important things when looking at modifiable root causes of cognitive impairment,” says Rusk.

“We no longer think that Alzheimer’s is only a disease of the brain. That’s definitely an endpoint,” she says. “Everything from dental health to herpes is being looked at, and the amyloid theory of Alzheimer’s is even being questioned by some people. I see trauma healing and stress reduction as important interventions. Chronic stress affects so much in our physiology and unhealed trauma leaves physiologic imprints.

 It’s also important to know,” she adds, “that 70% of dementias are of the Alzheimer’s type and 30% of dementias fall into other categories such as Frontal Temporal Dementia, Parkinson’s, Lewy Bodies, etc. getting properly diagnosed is very important.

The brain pathology of Alzheimer’s often starts 20 years before there are clinical signs. “A person goes from no dementia to SCI, MCI, early stages of dementia, mild, moderate, and severe stages,” says Rusk. “My goal is prevention, and my favorite thing to do is talk to young people about brain health. If we can intervene early, the decline can be delayed and even sometimes prevented.”

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: TheCaregiver’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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Should you move your loved one to a memory care home?

Forgetful senior with dementia

Moving my husband to a memory care home was the hardest thing I’ve ever done. But I knew that if I didn’t, I’d pay dearly with my own deteriorating health. After caring for Morris for 8 years, I was stressed and diagnosed with a serious disease. When I asked my doctor what he would do in my situation, he paused before saying “You need to take care of yourself.”

Morris was mostly able to take care of his personal hygiene, with some help in the shower, etc. But he wasn’t able to drive, and he needed help getting dressed. He could feed himself if I put the food in front of him. He still enjoyed watching movies, although I’m sure he couldn’t follow the plot. He liked being taken out to lunch, but he couldn’t read a menu. In other words, he needed a lot of help. I didn’t feel that he was a danger to himself or to me, but I didn’t leave him alone in the house for more than a quick trip to the grocery store. However, I was burned out and had received a diagnosis that no one ever wants to hear — the kind that requires a lot of self-care, rest, and good nutrition.

So I was relieved to learn that our spot on the waiting list at my chosen memory care home was towards the top of the list. And I was especially glad, thanks to my therapist’s advice, that I had looked for a place the previous year so that in case of an emergency I didn’t have to frantically scramble to find a home for my husband . . . a place where I felt confident that the caregivers would treat him with kindness, compassion, and respect.

How do you know when it’s time to move someone to a long-term facility?

Of course, every situation is unique, especially since no two dementia patients or families are alike. Some families consist of an elderly couple who live by themselves with no family nearby. A person with dementia may live on their own. Or an older parent may be looked after by an adult child or grandchild who lives nearby or in another state. But in every case, it’s vital to have safety measures in place. That may involve moving the person with dementia into a family member’s home or into a long-term care facility. Families that have several siblings — adult children of the affected parent — share the caring responsibility by having the parent rotate throughout the year, staying with each child for a few months at a time.

Here are some indications of when it’s time to make that move

  • The caregiver is burned out and stress is affecting his/her mental, emotional, and physical health.
  • When it becomes obvious that the person being cared for is unable to take care of their basic needs.
  • S/he wanders off and doesn’t know how to get back home.
  • S/he is isolated, lonely, and depressed.
  • Your loved one is angry and verbally or physically abusive.
  • S/he has mobility issues and tends to fall.
  • The person with dementia has Sundowner’s syndrome and gets agitated at the end of the day. This is a sign that they are becoming unable to live alone.

Making the decision to move a loved one into a memory care home is one of the hardest decisions you will ever make. Just remember that when you’re a caregiver for someone with dementia, it’s important to take care of yourself, too. Because if you don’t and you get sick, then who will take care of you?

Take the advice of my therapist and start looking for a home where your loved one will be well cared for. Or have a family meeting and make a caregiving plan that suits everyone. Here are a couple of other blogs that may be helpful. https://barbracohn.com/2019/08/03/the-20-most-important-things-to-consider-when-looking-for-a-memory-care-home/

https://barbracohn.com/2013/04/03/is-it-is-it-time-to-move-your-loved-one-to-a-memory-care-home/

Please be gentle with yourself.

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: TheCaregiver’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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

The memory care home wants to evict my loved one! What should I do?

Caregiver yelling at man in wheel-chair

Sometimes a person with dementia will act out and strike the person who just happens to walk by, or the person who accidentally walks into their room. Or, the aggressor might bite another person. Aggressive behaviors aren’t that unusual, but sometimes they get out of control. If they continue, the director of the memory care home will give the family a warning, and if the behavior isn’t resolved, the patient may be asked to leave.

Before things get out of control, there are modalities that can be used to help calm things down. Please read Chapter 18 “Aromatherapy” in Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia by Barbra Cohn (see below) on how essential oils can immediately diffuse a tense situation. The book contains 19 other healing modalities that really do work.

In our case, the care facility wanted my husband to leave because he became too needy. Even though the director assured me that the facility would be able to take care of him to the end of his Alzheimer’s journey when I signed the contract for him to move in, that’s not what happened.

After Morris had surgery for a kidney stone, he was unable to walk or toilet by himself. He couldn’t do much of anything anymore. He stopped talking and couldn’t feed himself. The facility where he had been for two years refused to accept him back from the hospital. The hospital discharged him on a Friday afternoon and we had to scramble for a facility that would take him. It was stressful and the new facility was awful. I begged the home where he had been to take him back, and they agreed, but with a big caveat. I had to hire a care person to be with Morris one-on-one because the facility didn’t have the staff to give him the extra care that he needed.

We hired extra care, but the cost became prohibitive. I moved Morris for the third time in four weeks to a different facility that specialized in end-stage Alzheimer’s. It was the perfect decision. He died there two weeks later, after having compassionate end-of-life care.

If things hadn’t gotten so crazy, and my husband hadn’t deteriorated as quickly as he did, I would have called my ombudsman to help me communicate with the first memory care home’s director. Her refusal to take Morris back after his hospitalization was virtually the same as kicking him out, and it was contrary to what was promised when I signed the initial contract: that they’d care for him until the end.

Contact your ombudsman

If you have any similar issues, contact your ombudsman. An ombudsman is someone who advocates for the health, safety, and rights of individuals in long-term facilities (LTC), and ensures that the residents are protected by the standards required under the Nursing Home Reform Law of 1987. Under the federal Older Americans Act, every state is required to have an Ombudsman Program that addresses complaints and advocates for improvements in the long-term care system. 

Unlawful evictions are one of the major complaints that an ombudsman deals with. The ombudsman will

If you can’t resolve a conflict or your concerns with the director of the facility or are uncomfortable, you can contact your ombudsman to:

  • Investigate suspected abuse (mental, physical, and emotional) of your loved one
  • Review inadequate staffing or training that should meet the level of care expected and promised
  • Discuss and resolve grievances that you and the staff have
  • Learn about your options and legal rights

Who can use an Ombudsman?

  • Residents of any nursing home or board and care facility, including assisted living facilities
  • A family member or friend of a nursing home resident
  • A nursing home administrator or employee with a concern about a resident at their facility
  • Any individual or citizen’s group interested in the welfare of residents
  • Individuals and families who are considering long-term care placement

How do I contact my Ombudsman?

Residential care communities must post the area’s ombudsman program contact information and responsibilities. You can also search for your state’s ombudsman by visiting the Elder Care Locator website (eldercare.acl.gov) or contact the Alzheimer’s Foundation of America’s (AFA) Helpline – 866-232-8484.

What if my loved one is asked to leave because of aggressive behavior?

First, try to figure out why your loved one is acting out. Does s/he have a urinary tract infection? Is s/he in pain because of a tooth abscess? Have a physician do a complete physical exam to rule out pain. Your loved one may be unable to articulate what is bothering them.

Be on the lookout for bruises, bedsores, stomach upset, missing personal items such as eyeglasses, or anything else that may be the cause of a change in behavior. Is another resident walking into your loved one’s room accidentally? Is loud music being played in the dining room? What about community TV shows? Are they violent, disturbing, or too loud?

Sadly, residents who have behavior issues are often given medications to control their outbursts. Try everything you can before resorting to those. My husband was given a sedating drug at one point and he became catatonic. As soon as I ordered the doctor to take him off the drug, Morris quickly reverted to his usual, pleasant self. When he would start to show agitation, I’d plug in an aromatherapy diffuser with a blend of oils that immediately calmed him down.

Essential oils can diffuse feelings of sadness, depression, anxiety, etc. Lavender oil is the most frequently used fragrance. You can also try bergamot, grapefruit, lemon, orange, clary sage, geranium, rose, and ylang-ylang, frankincense, and myrrh. Put the oil in a diffuser or spray bottle to mist your loved one’s collar or pillow. Find a fragrance that is pleasing to them.

It’s always in everyone’s best interest to try to solve things amicably. An attorney can help review your contract with the facility, especially when it comes to involuntary transfers and aggressive behavior. But hopefully, the situation won’t get to that point.

All the best to you in the new year,

Barbra

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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.


Is your care partner driving you nuts?

Stressed caregiver

It’s hard to maintain equanimity and patience when your care recipient is constantly repeating him/herself. Of is following you around the house like a puppy dog. Or is accusing you of “stealing” their wallet, or is getting up several times during the night so you’re unable to get the sleep you need for your own health and in order to take care of them without losing your cool.

When I couldn’t handle my husband’s early stage Alzheimer’s behavior, I’d simply leave the house and walk around the block. But as the disease progresses and it isn’t safe to leave your care partner alone in the house, that’s not always possible.

Here are 16 things that might help you keep your sanity, and your care partner’s too. 

  1.  Simplify communication by asking one question at a time. Break down complex ideas, and give only one choice, i.e. when helping your care partner get dressed simply ask “Do you want to wear the blue or green shirt?” Don’t ask open-ended questions. Ask questions with yes or no answers, if possible.
  2. Before speaking, make sure the television, radio, and music are turned off. Look directly in the eyes of your care partner. Use their name and maintain eye contact.
  3.  Provide a gentle physical touch. Just stroking someone’s arm, shoulders or head can reduce agitation.
  4. Put on soothing music. Or, if your care partner loves dance music (Big Band or Rock n/Roll, Latin), turn up the volume and dance!.
  5. Reduce or avoid use of caffeine, sugar, tobacco and alcohol.
  6. Reduce clutter, noise, and the number of visitors.
  7. Bring out the family photo albums to help the person reminisce about happier times. They may not remember what they ate 30 minutes ago, but chances are they will remember special events from the past.
  8. Go for a walk together, or drive to a park where you can sit together and watch children play, or the ducks swim in a pond.
  9. Schedule a relaxing massage for both of you. It will do you good!
  10. Ice cream works like magic. Go for a drive to your favorite ice cream shop.
  11. If your care partner accuses you of stealing their money, let them keep a small
    amount of money in a wallet. When they make an accusation, simply pull out the
    wallet to show them the money is still in there. In case they hide the wallet
    and you’re unable to find it, have a spare one on hand that looks identical to
    the original one.
  12.  If you need to bring your care partner to an appointment, leave plenty of
    extra time for getting dressed, eating, moving from the house to the car, etc.
    If you feel rushed and stressed, they will pick up on your feelings and start
    mirroring them.
  13. Use essential oils to immediately diffuse feelings of sadness, depression, anxiety, etc. Lavender oil is the most frequently used fragrance. You can also try bergamot, grapefruit,
    lemon, orange, clary sage, geranium, rose, and ylang ylang, frankincense, and myrrh. Put the oil in a diffuser or spray bottle to mist your collar or pillow. Find a fragrance that is pleasing to your care partner. It’ll help him/her also.
  14. It’s important to get at least 6 hours (preferably 7 or 8) of sleep every night. Of course, this isn’t always possible if you are caring for someone and need to get up at night, or are worried about paying the bills, taking care of the car, getting a new stove, etc. If you can’t get in the hours at night, put your feet up for 10 minutes during the day when your care partner naps. Or take a power nap. It really helps.
  15. Get help! Hire someone to come in a couple of times a week so you can get out of the house. If your budget doesn’t allow it, contact your county’s area agency on aging or senior care services agency for information about respite care.
  16.  When all else fails, maintain your sense of humor. Towards the end of my husband’s
    10-year Alzheimer’s journey, for some reason, we both shared a lot of
    meaningless laughs, probably because the whole damn journey was so exhausting
    for both us and what else was there to do? I had already shed more tears than I
    had in all the years leading up to the diagnosis.

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 AmazonBarnes & NobleBoulder Book StoreTattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.