Category Archives: Patient Safety

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.

10 ways for caregivers to reduce holiday stress

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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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

Cataract surgery reduces dementia risk

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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 Amazon, Barnes & Noble, Boulder Book Store, Tattered 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?

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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 Amazon, Barnes & Noble, Boulder Book Store, Tattered 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?

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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

Calmer WatersAbout 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 Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store,  Indie Bound.org, and many other fine independent bookstores, as well as public libraries.

20 Ways to prevent falls in Alzheimer’s patients

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Woman falls on slippery bathroom floor.

People with Alzheimer’s and other types of dementia are four to five times more likely to fall than older people who don’t have cognitive impairment. They are also three times more likely to fracture their hip when they fall, which leads to surgery and immobility. The rate of death following a hip fracture for those with Alzheimer’s is also increased.

A person with dementia may have trouble recognizing sight, sound or touch. Their vision may be distorted, not because of an actual eye problem but because of how the brain interprets what it is seeing. They may have problems with depth perception, get confused by patterns or light intensity, and they may lose coordination of movement and physical strength.

Some of these changes are inevitable and irreversible. However, movement and physical activity can go a long way toward fall prevention.

Scott Salus, occupational therapist and co-owner with physical therapist Daniel Basta, of Kind Rehabilitation says, “One of the main things that helps prevent falls is understanding that a fear of falling is one of the best predictors that someone will eventually fall.

“It’s really important to address falls before they happen. Caregivers need to come from an honest and firm place, because the moment someone has their first fall that can be the moment they lose their independence,” he says.

When Salus’ then-65-year-old, physically-fit mother and her boyfriend were moving, he insisted they look into the future to think about mobility issues. Would it be more prudent to live in a ranch than a multi-level home? “You can start the conversation early and plan for an eventuality that may never take place,” he says.

Salus, who specializes in working with patients with dementia and Parkinson’s, says, “The process of fall reduction is a delicate one that includes practicing every-day activities. We

reassure patients that it’s safe to practice pulling up their pants, or going into a shower fully clothed.”

He evaluates if the patient has vertigo when bending to tie their shoes or getting up from a seated position. Have they had a recent surgery or new diagnosis? How do they manage pain? Do they need a commode, or learn to reposition their arms, feet, and legs when toileting or getting out of a chair?

A physical therapy program might include exercises for strength, flexibility, good posture, and gait training. Learning to maintain balance while you’re walking and distracted or multi-tasking is also important, Salus adds.

The Feldenkrais Method® (Awareness Through Movement® and Functional Integration® developed by Moshe Feldenkrais) is another modality that helps prevent falls by teaching individuals to pay closer attention to the way they move.

Al Wadleigh, a Feldenkrais practitioner who teaches privately and at the Longmont Senior Center, starts a chair class by asking the participants to begin with a scan by turning the awareness inward. “Get a sense of how you’re making contact with the chair and with your feet on the floor. How is your weight distributed on the pelvis? Now roll back and forward to sense how your lower back is in relationship to the chair,” he says.

“We go through the lessons—and there are 2,000 of them—to fill out the idea of exploring and sensing what feels good. It’s to figure out, when given a better opportunity and choice, what the nervous system prefers. It’s development learning in order to change habits from old injuries, surgeries, emotions, work, and thoughts that don’t serve us.”

The aim of Feldenkrais is to invigorate your brain and nervous system with new ways of organizing and sensing your movement in the world. “Around age 50 the brain says ‘we’re not using all our neuro-pathways.’ We have fewer to rely on, so we have to neutralize the old habits in order to live life with more vitality,” Wadleigh adds.

He ends the class by asking participants to do a self-inquiry. One person says, “I’ve done the pelvis rock many times but sitting on a chair made it clearer.”

Wadleigh responds that the smaller the movement the more precise it can be. Once you’re aware of what you’re not aware of, you can fill in those parts.”

Another person with Multiple Sclerosis says that one of his feet was dragging that morning. “Now I can lift it up.” He adds, “I feel a centered-ness since doing Feldenkrais, and have better structure. Now when I stand and I’m reaching for something I’m able to move easier. That’s big for me.”

20 Tips for preventing falls

  1. Have adequate lighting throughout the house; place night lights in the bedroom and bathroom.
  2. Limit liquids after dinner to reduce night-time toileting.
  3. Get adequate sleep.
  4. Remove loose area rugs.
  5. Wear gripping socks, sturdy slippers, or shoes in the house.
  6. Avoid unsafe shoes, i.e. flip flops and high-heels.
  7. Place guardrails where needed.
  8. Stand up slowly.
  9. Use a walker or cane for steadiness.
  10. Declutter and remove excess furniture.
  11. Implement an exercise program to support muscle strength, stability, and balance.
  12. Use a “reach stick” to grab out-of-reach items.
  13. Do not use a step ladder.
  14. Eliminate or reduce alcohol and smoking.
  15. Be wary of medications that cause dizziness, sleepiness, and unsteadiness.
  16. Be attentive to pain management.
  17. Be aware of where your pet is to avoid tripping.
  18. Get adequate calcium and vitamin D to maintain bone health.
  19. Maintain a healthy weight.
  20. Get regular vision and hearing check-ups.
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.

How to protect your loved ones from elder abuse during the coronavirus lockdown

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senior man covering his face with his hands. Depression and anxiety Copy space.World Elder Abuse Awareness Day is June 15. According to the World Health Organization elder abuse is a violation of human rights and a significant cause of illness, injury, loss of productivity, isolation, and despair. It touches people across all socioeconomic groups, cultures, and races. But only about one in five cases is ever reported. People with dementia are particularly vulnerable because they are unable to recognize that they are being abused or to report it.

This year during the coronavirus lockdown, there have been massive increases in reports of elder abuse ranging from financial scams to incidents of family violence. https://www.levinperconti.com/nursing-home-abuse/

The most vulnerable

Aging adults are highly susceptible to the deadly effects of COVID-19. Just knowing this, amps up anxiety levels and depressive symptoms in aging adults who might be isolated, lonely, and alienated from their families. Isolation and loneliness make the elderly even more vulnerable to scams, and to abuse by caregivers, neighbors, family and financial advisors.

Adults with mental disabilities and/or dementia who live in care facilities are exclusively cared for by staff who may not be in communication with family members. Family members have been restricted from entering the facilities in order to manage the spread of the virus. Consequently, family members are unable to see first-hand whether their loved one is being well cared for.

A news story recently reported that a son was shocked to learn that his father was severely dehydrated, hadn’t eaten for days, and was left in a dirty diaper for more than a couple days. The response he got from the facility was that they were short of staff because so many people were out sick.

Also, people who have diminished eye sight or hearing, or are confined to a wheel chair are vulnerable. My friend’s father who has macular degeneration and is hearing impaired was scammed out of thousands of dollars by a caller who claimed that she was his niece. She said that she was being held in jail and needed bond money. This type of family emergency scam has been going on for years via telephone calls.

We’ve all heard of telephone scams in which a caller claims he is a jailed grandson who pleads with his grandparents to send bail money, or the IRS scam where the caller threatens severe consequences if the senior doesn’t pay tardy taxes.

These types of occurrences are all too common, especially in under staffed, underfunded nursing homes.

Verify an emergency

If someone calls or sends a message claiming to be a family member or a friend desperate for money:

  • Resist the urge to act immediately, no matter how dramatic the story is.
  • Verify the person’s identity by asking questions that a stranger couldn’t possibly answer.
  • Call a phone number for your family member or friend that you know to be genuine.
  • Check the story out with someone else in your family or circle of friends, even if you’ve been told to keep it a secret.
  • Don’t wire money — or send a check or money order by overnight delivery or courier.
  • Report possible fraud at ftc.gov/complaint or by calling 1-877-FTC-HELP.
  •  Report COVID-19 related scams to the National Center for Disaster Fraud (1-866-720-5721)

Types of abuse

  • Physical–causing pain or injury
  • Neglect–failure to provide food, shelter, clothing, medical and other necessities required to provide a safe, nurturing environment
  • Emotional and Psychological—Verbal assaults, harassment, threats, intimidation
  • Confinement –restraining or isolating the person
  • Financial—Scams, misuse or withholding of the person’s financial resources to the disadvantage of the elderly person, and to the advantage of another person.
  • Deprivation—Denying the person medication, medical care, food, shelter or physical assistance
  • Sexual abuse –Any sexual activity, including fondling, when the person is unable to understand, unwilling to consent, or threatened or physically forced

Signs of abuse

  • Bruises, pressure marks, broken bones, abrasions and burns
  • Bruises around the breasts and genital area could indicate sexual abuse
  • Poor hygiene, bed sores, unattended medical needs, unusual weight loss
  • Sudden withdrawal from normal activities, unexpected depression, and a sudden change in alertness can be an indicator of emotional abuse. However, these symptoms can be the result of a progression of dementia or other disease.
  • Sudden changes in financial situation can be a result of exploitation.
  • Aggressive behavior from a caregiver or from the person being cared for can result in verbal or emotional abuse on either end.

Report abuse

Abuse can occur anywhere: at home, in nursing homes, and memory care homes. If you suspect abuse don’t hesitate to report it. You do not have to prove anything. It is up to the professional staff to investigate your suspicions, and put the proper safety measures in place.

If you suspect abuse, call the police or 911 immediately if you someone you know is in immediate or threatening danger.

Caregivers also are the recipients of abuse from the person they care for. If a caregiver feels physically threatened it’s important to get help in providing safe care for the person being cared for, possibly in a facility.

What can you do to protect yourself and your loved ones?

Report suspected mistreatment to your community’s Human Services Adult Protection agency and/or law enforcement office. Even if a situation has already been investigated, if you believe circumstances are getting worse, continue to speak out.

If you or others experience abuse or neglect in a community setting:

Report suspected abuse or exploitation to the local Adult Protective Services or Long-Term Care Ombudsman Program .

Human Services provides help with:

  • In-home assessment for abuse, neglect, and/or exploitation
  • Crisis intervention
  • Monthly visits by a case worker, if risk continues
  • Assistance with housing and/or placement to alternative housing
  • Assistance with obtaining benefits
  • Money management
  1. To report suspected abuse in a nursing home or long-term care facility, contact your local Long-Term Care Ombudsman. Each licensed long-term care facility is required to display a poster with the facility’s assigned ombudsman’s name and contact information. If you are a resident or family member of a resident in a facility, call the ombudsman listed on the poster. To learn more about the ombudsman program visit: Long-term care ombudsmen are advocates for residents of nursing homes, board and care homes and assisted living facilities. http://www.ltcombudsman.org
  2. Caregivers (both family and professionals) are most often the abusers of the elderly. Stress and feelings of being overwhelmed may provoke unintentional belligerent feelings. If you feel overwhelmed or frustrated as a caregiver, talk to someone for support.
  3. To speak with an Alzheimer’s Association Care Consultant call: 1-800-272-3900
  4. To find a support group in your area visit http://www.alz.org/apps/findus.asp
  5. To receive support from other caregivers visit https://www.alzconnected.org/
  6. To report an incident or concern of abuse or neglect, call the Alzheimer’s Association (1.800.272.3900) or Eldercare Locator (1.800.677.1116). You’ll be connected to your state or local adult protective services division or to a long-term care ombudsman. You do not need to prove that abuse is occurring — it is up to the professionals to investigate suspicions.
  7. Read more: http://www.alz.org/care/alzheimers-dementia-elder-abuse.asp#ixzz2W9DhCbSL
  8. Keep in contact. Talk with your older friends, neighbors, and relatives. Maintaining communication will help decrease isolation, a risk factor for mistreatment. It will also provide a chance to talk about any problems they may be experiencing.
  9. Join Ageless Alliance, a national, non-profit grassroots organization working to promote aging with dignity and eliminate elder abuse, neglect and exploitation through Awareness, Advocacy and Action. Based at the Center of Excellence on Elder Abuse and Neglect at the University of California, Irvine, Ageless Alliance is a grassroots campaign to give a voice to those who have been affected by elder abuse and abuse of adults with disabilities.
  10. Plan ahead to protect against financial exploitation. Download a handout on ways to protect yourself or a loved one.http://www.ncea.aoa.gov/Resources/Publication/docs/NCEA_ProtectYourself_web508.pdf
  11. Be aware of the possibility of abuse. Look around and take note of what may be happening with your older neighbors and acquaintances. Do they seem lately to be withdrawn, nervous, fearful, sad, or anxious, especially around certain people, when they have not seemed so in the past?
  12. Contact your local Area Agency on Aging (AAA) office to identify local programs and sources of support, such as Meals on Wheels. These programs help elders to maintain health, well-being, and independence—a good defense against abuse. See the Eldercare Locator, www.eldercare.gov Welcome to the Eldercare Locator, a public service of the U.S. Administration on Aging connecting you to services for older adults and their families. You can also reach us at 1-800-677-1116.

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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.

Why hydration is crucial, especially during the pandemic

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Glass of waterAdipsia is the fancy name for the loss of the sense of thirst. As we get older, our sense of thirst diminishes, just as our sense of smell and taste diminish. Chronic dehydration  is one of the most common problems among seniors and the elderly who reside in care facilities.

If you have a loved one at home with dementia or in a care facility it’s important that you learn the signs of dehydration (below) and offer water or another beverage to your patient every hour and throughout the day.

Many older adults often limit their fluid intake because they may be incontinent or fear accidents. Those who have limited mobility may try to avoid another trip to the toilet. Individuals who have aphasia (inability to speak due to dementia or brain damage from  stroke, etc.) may not be able to express their thirst.

Better monitoring of fluid intake is needed at care facilities

Studies have shown that nearly all nursing home residents suffer from inadequate hydration. Additionally, in one study, 25 out of 40 participants suffered from diseases that may have been caused or exacerbated by their being dehydrated.

If your loved one is in a care facility now—during the COVID-19 pandemic–it is more important than ever to try to encourage them to drink. Ask the staff to put signs up in their room as a reminder. It’s especially important if your loved one has dementia and forgets to drink or is not thirsty.

What happens when you are dehydrated?

Your blood begins to thicken, which interferes with normal blood flow and viscosity. This is one of the reasons why, especially during the  pandemic, it’s crucial to stay hydrated. There have been many reports of blood clots and other cardiovascular episodes in patients with COVID-19. The kidneys, liver, pancreas and other organs can be severely affected from dehydration, and severe dehydration can lead to acute pancreatitis in some individuals.

Dehydration can interfere with brain function

This is a good example of what happens when our brains are dehydrated. My mom wasn’t able to walk the last two years of her life, and was dependent upon two private caregivers. She also drank thickened water, which is a disgusting thickened pudding-like liquid that substitutes for water. The reason?  She aspirated water and food into her lungs, which caused her to cough. Sometimes, the result was pneumonia. She may have felt thirsty and not wanted to bother with the thickened water, or maybe she wasn’t thirsty. But she ended up being severely dehydrated on more than one occasion.

When Mom was admitted to the hospital for a UTI (urinary tract infection), she developed delirium. A psychiatrist called me to report that my mom was exhibiting full-blown dementia. I had just spoken to Mom a day before and she sounded fine. I refused the offer of an antipsychotic drug for her, knowing well the high risk of putting an older adult on those drugs. (see Why you should throw away that antipsychotic drug prescribed for your loved one). As it turned out, my mom was severely dehydrated. After a couple days on a hydrating intravenous solution she returned to her normal self.

It’s important to learn the signs of dehydration in everyone, but especially in seniors and young children. The physical symptoms are usually clear:

  • dry lips and sticky or dry mouth
  • no tears when crying
  • dry, papery skin that tents when it is pressed
  • decreased urine output
  • sunken eyes
  • headache
  • lethargy
  • dark urine
  • extreme thirst
  • unable to sweat
  • fast breath rate
  • low blood pressure
  • the mental symptoms are not as obvious, but can result in mental confusion, irritability, delirium
  • extreme cases of dehydration can lead to loss of consciousness, coma, kidney failure, and seizures.

Ways to stay hydrated

If you are a caregiver (and that includes caring for yourself!) here are some helpful guidelines:

The rule of thumb is to have 48 to 64 ounces of non-sweetened, non-artificially sweetened drinks. Hydration keeps the body in proper pH (how acidic or alkaline your body is) and protects it from getting dehydrated, which is a cause of inflammation and other kinds of imbalances. Dehydration can also contribute to urinary tract infections (UTIs).

  • Encourage and remind your care partner to drink.
  • Drinking healthy fluids is important as eating healthy foods. Water is the top choice, followed by herbal teas, milk, vegetable and fruit juices. Remember that juices contain a lot of sugar, both natural and added, so don’t overdo them. Soups are nourishing and hydrating but be aware of the sodium content. Avoid carbonated and caffeinated drinks which have a diuretic effect.
  • Serve liquids at a temperature that your care partner likes. Not everyone enjoys ice water.
  • Flavor water with lime or lemon.
  • Remind your care partner not to wait until s/he is thirsty. By then s/he is already dehydrated.
  • Serve juicy fruits such as watermelon, which contain lots of water.
  • Offer healthy popsicles as an addition to drinks and to those who refuse water.
  • Smoothies and shakes are nourishing and filling.

The next time your mind is muddled, drink a tall glass of water and notice the difference. Drink plenty of water, fresh juices, and herbal teas to stay hydrated, flush out toxins and enjoy mental clarity. It is especially important now as we head into summer and during the COVID-19 pandemic. But it’s just as important all year round.

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Does dementia increase a person’s risk of getting Coronavirus?

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Elderly woman looking sad out the window.Although dementia in itself doesn’t increase one’s risk, there are other factors that might contribute to a person’s increased risk.

Does the patient have any underlying conditions such as high blood pressure, diabetes, auto-immune disease, lung diseases including asthma and COPD, cancer? All of these increase risk of serious symptoms associated with the COVID-19 virus.

If a person with dementia is living at home, s/he may be at increased risk if they forget to wash their hands or socially distance. And, of course, as we are all well aware of, patients in care  facilities are at higher risk simply for the fact they are communally living together. Caregivers come in and out of the facility, go to their homes, and may be interact with others. See Should you move a family member back home from a care facility?

What can you do?

  • If your loved one is living at home and can still read, place sticky notes around the house  (refrigerator, bathroom, kitchen sink) in appropriate places to remind him/her to wash their hands.
  • Call often to check in. Use Zoom or Skype, Facetime, if the person can manage technology. Amazon’s new Portal, which is like a large iPad that is kept plugged in, is an easy device. Check it out: It’s a smart, hands-free video calling device with Alexa built-in.
  • Make sure your loved one has adequate food. If s/he can still prepare meals, drop off their groceries. If they have trouble in the kitchen, bring home-cooked meals or make arrangements with an organization such as Meals on Wheels that can deliver foods.
  • If you have to go inside the person’s home, make sure you have on a mask and gloves, and maintain physical distance as much as possible.
  • A person with dementia is probably not keeping a clean, tidy home, which is important to health and wellness. Try to clean around the person. Have him or her sit in front of the TV or at the kitchen table, while you vacuum and clean the bathroom. Then move him/her to another room in order to clean the kitchen.
  • The main thing is to stay in daily contact. Have the grandkids write notes and draw pictures to send in the mail. If you live in the same town, visit from the lawn and have your loved one sit on the front or back porch.
  • Set up a daily schedule for your loved one. Keep it posted on the fridge. For example: 8:00–wake up, toilet, brush teeth, shower. 8:30 Take meds, eat breakfast. 9:30 Do fitness routine, etc. Do 10 sit-to-stands while watching TV. Walk through the house for 10 minutes a couple times a day.
  • It’s important to protect our loved ones physically but to engage them socially to prevent loneliness and to keep them mentally stimulated. Here’s a great way for seniors whose dementia is minimal.

Well Connected (formerly called Senior Center Without Walls), is a telephone-based national program that offers free weekly activities, education, friendly conversation, classes, support groups, and presentations to individuals 60 years or older anywhere in the United States for English and Spanish speakers. There are activities occurring throughout the day, every day 10:00 am-8:00 pm, Mountain Time, depending on the day. Sessions run between 30 minutes to one hour.

Play a game, write a poem, go on a virtual tour, meditate, share a gratitude, get support, and most importantly, connect and engage with others every day. Well Connected is a community consisting of participants, staff, facilitators, presenters, and other volunteers who care about each other and who value being connected. All groups are accessible by phone and many are accessible online.

Well Connected offers 75 different programs. People can join a particular group, call in the same time each week, hear the same voices on a regular basis and make friends. This has a positive impact on their emotional and physical life. “The gratitude activity, which is offered twice a day, is especially popular and well attended,” says Wade, Social Call director (see below). “Participants share something they are grateful for. This allows for an increase in social connectedness. We also have fun and intellectual programs that help individuals feel valued, stimulated and engaged, and sometimes we invite presenters from the outside in.”

Wade pointed out that Well Connected, is not just for people with mobility concerns. We get folks who are active, people who are married and individuals in a co-housing situation. Anyone can feel lonely, she says. “We take a survey every year and the results indicate that 85% of our participants feel more intellectually stimulated and  socially connected. And on a daily basis, we get calls of gratitude from participants who say, ‘this program saved my live,’” says Wade.

Well Connected also offers a program called Social Call, in which volunteers call participants for a weekly phone visit. For more information, email coviaconnections@covia.org or call 877-797-7299.

Well Connected is an award-winning program of Covia, formerly called Episcopal Senior Communities. For more information: To register call 1-877-797-7299,  https://covia.org/services/well-connected/

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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.

Should you move a family member back home from a care facility?

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I'll have to learn to walk againAccording to the New York Times (April 17, 2020), about a fifth of U.S. virus deaths are linked to nursing homes and other long-term care facilities. That’s about 7,000 people.

It’s an extremely difficult time for families who have a loved one in a care facility. You’re not able to visit, and you and your loved one might be missing the physical touch that we as humans crave.  You might be too overwhelmed with caring for others at home to make the drive to the care facility, only to be allowed to peer through a window and touch hands separated by glass.

Two of my friends recently lost a parent who was in a nursing facility. Their parents didn’t die from Covid-19. One died from Alzheimer’s (yes, Alzheimer’s is a fatal disease) and the other had dementia and was recovering from a broken pelvis. Neither friend was able to get to the facility in time to say good-bye, partly because of the imposed lock-down on these facilities.

You might be worried that your loved one will contract Covid-19. What should you do?

Should you move your loved one home?

  • Consider why you moved your loved one to a care facility in the first place. Are you able to safely care for him/her at home?
  • How is your health? Have you been sick? Do you have a chronic condition that prevents you from taking on added stress?
  • Are you overwhelmed caring for children who are doing online schooling?
  • Are you working from home?
  • Is your loved one mobile? Continent? Can you bathe and dress him/her? Do they need a two-person transfer?
  • Can you hire in-home care? This option comes with the risk of having an outsider who has possibly been exposed to Covid-19 come into your home.
  • A person with dementia might have compounded anxiety during the pandemic. Anxiety increases when a person with dementia has their routine disrupted. The individual may not be able to understand what is going on, but pick up on the stress of those around him/her. Would you have the patience and time to devote to caring for such an individual?
  • Be honest with yourself, and consider your own health, psychology and emotional well-being.

If moving your loved one is out of the questions, consider these tips from The Alzheimer’s Association.

If your loved one is in a care facility:

By now, almost all care facilities are not allowing visitors through the door. 

  • Check with the facility regarding their procedures for managing COVID-19 risk. Ensure they have your emergency contact information and the information of another family member or friend as a backup.
  • Do not visit your family member if you have any signs or symptoms of illness.
  • Depending on the situation in your local area, facilities may limit or not allow visitors. This is to protect the residents but it can be difficult if you are unable to see your family member.
  • If visitation is not allowed, ask the facility how you can have contact with your family member. Options include telephone calls, video chats or even emails to check in.
  • If your family member is unable to engage in calls or video chats, ask the facility how you can keep in touch with facility staff in order to get updates.

What if the care facility has or had Covid-19 incidences?

  • Ask the facility about their quarantine procedures. What is your level of confidence that CDC guidelines are being followed?
  • How many people in the facility have been impacted by COVID-19? Are those affected staff, residents or both?
  • Is your family member able to follow social distancing procedures (with or without help)?
    • In some cases, the person may not be able to walk or move about on their own. This could help maintain social distancing.
  • Does the facility have and use personal protective equipment?
  • How many staff members interact with your family member on a regular basis? Is the facility able to limit the number of staff who work with your family member?
  • Is the facility adequately staffed to provide the level of care your family member requires?

The Centers for Disease Control has issued these guidelines for nursing home visitation in the wake of the COVID-19 outbreak:

Limiting Visitation: For facilities that are in counties, or counties adjacent to other counties where a COVID-19 case has occurred, we recommend limiting visitation (except in certain situations as indicated above). For example, a daughter who visits her mother every Monday, would cease these visits, and limit her visits to only those situations when her mom has a significant issue. Also, during the visit, the daughter would limit her contact with her mother and only meet with her in her room or a place the facility has specifically dedicated for visits.

Facilities should actively screen and restrict visitation by those who meet the following criteria: 1. Signs or symptoms of a respiratory infection, such as fever, cough, shortness of breath, or sore throat. 2. In the last 14 days, has had contact with someone with a confirmed diagnosis of COVID19, or under investigation for COVID-19, or are ill with respiratory illness. 3. International travel within the last 14 days to countries with sustained community transmission. 4. Residing in a community where community-based spread of COVID-19 is occurring.

Be kind to yourself, and try not to feel guilty about not being able to visit your loved one. Caregiver guilt is complicated, but you are probably doing the best that you can.

This pandemic lock-down is unprecedented. Hopefully, the restrictions will lift soon and you’ll be able to be with your loved one again. Until then, take extra good care of yourself.

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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.