What does end-stage Alzheimer’s and dementia look like?

Brain disease with memory loss due to Dementia and Alzheimer’s illness

Nine years after my husband Morris was diagnosed with Alzheimer’s disease he developed a kidney stone. At that point he was still walking, but shuffling and sometimes losing his balance. He was speaking, although he often didn’t make any sense. He was laughing–sometimes. And he usually knew his family and friends. It was difficult for him to eat and he often didn’t know what he was eating. But mostly he fed himself.

The day he went to the emergency for severe pain from a kidney stone, Morris was propelled on a downward spiral into end-stage Alzheimer’s. He died six weeks later. In just a matter of days my husband lost his ability to walk, toilet, speak and eat by himself. He needed to be lifted out of bed into a wheel chair and spoon fed. The memory care home he had lived in for two years wouldn’t accept him back because he was no longer ambulatory.

Morris was released from the hospital on a Friday afternoon to a rehabilitation center for physical therapy, which attempted to help he walk–which he never did again. At the rehab center he didn’t sleep at night. The floor attendant kept him in a wheel chair in the hall so he wouldn’t get out of bed and fall. They ended up putting his mattress on the floor because he did fall out and required stitches on his forehead. He’d go days without sleep and my son-in-law predicted that the lack of sleep would get him in the end.

I moved Morris back to his original memory care home on the condition that I had to hire outside help. The rehab facility was understaffed and the food provided little nutrition. The first night I left him there I felt as though I was leaving him to the “wolves.”

When I first placed him in the memory care home two years previous to this time, I was promised that my husband could stay there throughout the course of his illness. So if you are planning to place a loved one in a home, read the contract very carefully.  After he was back at the home for a couple weeks I had to move him again because it was costing way too much at this point to pay the monthly bill of $6,000 dollars plus an additional hourly fee for the outside care agency. Morris lived only two more weeks in an end-stage hospice facility. The staff was top notch and compassionate and I’m grateful that I moved him there.

End-stage Alzheimer’s is not pretty.

It includes:

  • incontinence
  • difficulty eating and swallowing
  • loss of speech
  • inability to walk and get out of bed
  • total assistance with personal care
  • not recognizing family members—but not all the time
  • secondary illnesses
  • sleep issues or sleeping most of the time

What can you do?

  1. Make sure you have all your loved one’s legal and financial papers in place well before this stage. (durable power of attorney, will, trust, advance directives, DNR-do not resuscitate, etc., final arrangements-cremation or burial, memorial service, etc.)
  2. Ask family and friends for support, and be specific. Do you need help with yard maintenance or with walking your dog?
  3. Do you need someone to shovel the driveway or sidewalk if you are spending a lot of time with your loved one?
  4. Ask someone at your place of worship to set up a meal-train or to set up a CaringBridge account to keep friends and family abreast of the current situation.
  5. AFA–Alzheimer’s Foundation of America’s licensed social workers are available Monday through Friday, from 9am to 9 pm EST, and Saturdays from 9am to 1pm EST, via AFA’s National Toll-free helpline–866-232-8484. They are also available by e-mail, chat and Skype.
  6. The Alzheimer’s Association Helpline is open 24/7-800-272-3900.
  7. Hospital chaplains console families and help in times of grief and the difficult period of waiting for a loved one to recover or pass.
  8. Hospice offers support to the patient by providing personal services that include bathing, and palliative care. Hospice also offers grief counseling to families.
  9. It is important that as a caregiver you take care of yourself. On days that I was too exhausted to make dinner, I would heat a pan with a bit of olive oil, saute pre-washed spinach, and pour over a couple of eggs for a healthy, quick meal. Protein is important and so are greens that contain the stress-reducing nutrients vitamin B and magnesium. If you have difficulty eating because of nerves and emotions or time limitations, make yourself a protein shake with berries and/or a banana, a scoop of protein powder and liquid of your choice.
  10. Aromatherapy is a miracle cure for stress and anxiety. Use a wall plug-in to diffuse the aroma of lavender oil to uplift mood, or place a few drops on a handkerchief and tuck it into a shirt pocket or on a pillow. Other oils to try: vetiver, frankincense, myrrh, orange, lemon, bergamot, and grapefruit.

Blessings to you, your family and your loved one.

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 New year requirements for all caregivers

You’re tired, you’re stressed–You and 45 million or so American caregivers. So what are you going to do about it? Don’t say that “I don’t have time to take care of myself.” I’ve been there and done that. But I always promised myself that I was not going to be a martyr and sacrifice my health for my husband’s illness. Because if both of us went done that wasn’t going to serve any purpose, least of all our children. They were barely adults when my husband was in the throes of Alzheimer’s disease. They needed at least one healthy parent. And whether you are taking care of a spouse, parent or child, there are other people in your life who love and need you, not necessarily to take care of them, but to love and support them emotionally.

When you are a caregiver, it’s hard to find the time to go to the gym or even take a shower, somedays. But it’s absolutely vital that you take care of yourself or you will end up getting sick and then who will take care of your loved one? Who will take care of YOU?

Here are 10 easy ways to take the edge off your stress and fatigue so you feel some relief.

  • Say a positive affirmation before you get out of bed. “This day is going to be a good one.” “I am grateful for my friends and family.” “I am healthy and full of energy.” “I am strong and competent.” Say something positive to set the tone of the day.
  • Before you reach for a cup of coffee, drink a glass of hot water with lemon. It hydrates your body and brain, the lemon helps to alkalize the system (yes, it’s counter intuitive), which is usually too acidic, and it helps with regularity.
  • Ask for help! You don’t have to do it all by yourself. No one is going to think badly of you if you take some time for yourself. If your loved one resents your going out, it’s okay. Don’t become a slave to their wishes and rants. If you can’t leave your loved one alone, please ask a neighbor, friend or home care professional to help at least a couple hours a week. Some social service programs provide free respite care.
  • Many cities throughout the U.S. offer volunteer snowbusters (volunteers who will shovel your walk and driveway), fix-it volunteers who will help with easy home repairs, and yard maintenance volunteers.
  • Meet a friend for a chat over coffee. Having a good chat and/or laugh, either via telephone or in person does wonders.
  • Find a walking partner in your neighborhood and try to walk at least once a week (preferably 3 times a week).
  • Put on a CD, vinyl record or the radio and listen to your favorite music. If your care partner is mobile, ask him/her to dance. There is nothing like music or dance to uplift the spirit.
  • 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.
  • Take a multi-vitamin mineral supplement to support your overall health, well-being, and immunity.
  • 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.

Wishing you and your loved ones a healthy, happy New Year! And remember that “this too shall pass.”

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.

20 energy and stress fixes to use now!

The holidays are stressful for everyone, but especially for caregivers. Here’s a list of some of my favorite stress relievers and energy boosters.

Soak in an Epsom salt bath and put in a few drops of lavender oil.
Soak in an Epsom salt bath and sprinkle in a few drops of lavender oil.
  1. Start the day with an affirmation. Before you get out of bed say something such as: “I am happy for the beautiful day.” I am grateful for my family and friends.” “I am cherished.” Make it yours, make it sincere. It’s amazing how it can set a positive tone of the day.
  2. Breathe! When we are stressed we tend to hold our breath. Take a 5-minute break and sit down in a comfortable chair. Close your eyes and take a deep breath, in and out. Then focus on your breath and watch how your mind quiets down and your muscles relax. Then remember to breathe throughout the day. Whenever you feel yourself getting anxious or tight, take a deep breath and let it go.
  3. Drink water. We’ve heard it a million times but it’s always good to be reminded. Forget about sodas and limit the wine and alcohol. Staying hydrated, especially at this time of year, is vital to supporting the immune system and reducing inflammation. It’s also important to support healthy cognitive function and memory.
  4. Make lists, including a meal plan for the week. It helps eliminate the last hour panic of “what am I going to make for dinner?” and unhealthy last-minute food decisions like ordering pizza.
  5. “Me time” is important! Get respite care if your loved one needs full-time attention. Ask a neighbor, relative or friend to come over for an hour or two so you can take a walk, go to the gym, or meet a friend for lunch or coffee.
  6. Eat walnuts. A daily dose of about 9 whole walnuts or 1 Tbs. walnut oil helps your blood pressure from spiking during stress. Walnuts contain L-arginine, an amino acid that helps relax blood vessels, which in turn helps reduce hypertension.
  7. Drink green tea. L-Theanine is the main chemical constituent in green tea. It is an ideal nutritional aid for stress because it produces alpha-wave activity that leads to deep relaxation and mental alertness. This is especially important because in order to mitigate stressful situations, it’s important to remain calm and alert. Theanine also stimulates the release of the neurotransmitters GABA, serotonin and dopamine, which help us feel happy, motivated and calm. Green tea extract is available as a nutritional supplement, which might be easier and quicker to take, and it’ll save you a lot of trips to the bathroom.
  8. While we’re on the topic of “green,” be sure to eat green leafy vegetables for vitamin B and magnesium, both of which help your body cope with stress.
  9. Two handfuls of cashews (make that a small handful, please; one ounce of cashews contains 157 calories.) provide a mood-boosting effect because they are one of the highest natural sources of tryptophan, the precursor for serotonin, the feel-good neurotransmitter.
  10. Did someone mention dark chocolate? It reduces cortisol, the stress hormone that causes anxiety symptoms. Just a couple of pieces should do the trick.
  11. Stretch! It’s important for everyone, not just runners and athletes. Stretching keeps your muscles flexible, strong and healthy. Without it, muscles tighten and weaken, which puts you at risk for joint pain and strain.
  12. Walk around the block. Just getting out into fresh air will instantly relieve stress, and moving your body gets your blood pumping and will clear your mind.
  13. Light candles and play relaxing music while you eat. It will change the mood instantly.
  14. Aromatherapy is a miracle cure for stress and anxiety. Use a wall plug-in to diffuse the aroma of lavender oil to uplift mood, or place a few drops on a handkerchief and tuck it into a shirt pocket or on a pillow. Other oils to try: vetiver, frankincense, myrrh, orange, lemon, bergamot, and grapefruit.
  15. Sit down, close the door and meditate. If you don’t have a mantra use the word OM. Repeat it silently and when you realize you are not saying it, then gently come back to it. Do it for 10 to 20 minutes every day and yoyu will notice that you are much more relaxed.
  16. Music is the universal language, and it is also the universal stress reliever. Whether it’s jazz, classical, or hard rock that makes you feel better, by all means, play it loud, play it soft, dance to it, drive to it, go to sleep to it. It will definitely help.
  17. Take a multi-vitamin mineral supplement to help with stress, energy and immune support.
  18. Warm up with warming herbs and spices such as ginger, turmeric, cumin, oregano, cayenne, black pepper, cardamon, garlic.
  19. Take an Epsom salt bath and put in a few drops of lavender oil. Light some candles, turn down the lights, put on some music, and relax!
  20. Getting the proper rest is vital to staying healthy and reducing stress. Prepare yourself for a deep night’s sleep by unplugging from electronics at least an hour before bed, taking an Epsom salt bath (put several drops of lavender oil in the water for added relaxation), and making sure the room temperature isn’t too warm.  Good night, sleep tight!

If you, or someone you care about, tend to suffer from stress, anxiety, or depression, these recommendations might just “take the edge off” and improve your quality of life … without the risk of side effects. May the holiday season begin!

Best wishes for a happy, safe and relatively stress-free holiday season!

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.

Caring for yourself and others with good nutrition

Mary Collette Rogers interviewed me on her podcast “The Healthy Kitchen Companion.”

Find out more about Mary’s programs around The New Kitchen Way: cookhappylivehealthy.org/blog/

Discover insights and tools for handling the challenges of caregiving, particularly stress. Sobering statistics highlight the need for addressing this topic: In 2017, fully 16 million friends and family provided 18 billion hours of unpaid care for 5½ million Americans with Alzheimer’s. That figure, of course, accounts for just one of many chronic conditions that required the services of caregivers.

Equally important is the need for self-care since it is said that at some point you’ll either be a caregiver or be cared for yourself. Self-care can minimize the need for care from others, or make it possible to provide care to those you love.

In this conversation, Barbra Cohn and Mary Collette Rogers share a wealth of knowledge and strategies for using the power of good nutrition to alleviate the stress of caregiving–whether for yourself or others.

Barbra, author of Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia, provides solid nutritional advice for
** Introducing the Stress Vitamins and minerals, and foods where they can be found
** How neurotransmitters like serotonin improve mood and how to use natural mood boosters in foods to uplift mood
** Why breakfast is the most important meal of the day for caregivers and key breakfast foods
** Barbra’s secret for boosting immunity, staying hydrated and replenishing nutrients drained by stress

Mary Collette, Healthy Kitchen Companion, explores how to ensure that Barbra’s nutritional wisdom doesn’t just get parked at the kitchen door. With The New Kitchen Way, her integrated approach to meal making, you’ll see good nutrition advice actually show up on your table–deliciously and easily. Learn
** About the power of organization and why it works as well in the kitchen as the business world
** How chaos and lack of control are the true culprits that sabotage kitchen fun and success
** How organization alleviates stress when you invite it into your kitchen and meal making
** How the kitchen and meal making can be broken down into just six areas, and
** How the 6 KitchenSmart Strategies easily guide you to get those six areas under control, leaving you relieved and confident about making nourishing meals.

 

 

Have you tried any of these natural ways to combat depression?

St. John's Wort capsulesOctober 11 is National Depression Screening Day. If you are feeling overwhelmed, depressed or have a hard time getting out of bed in the morning because you don’t want to face the world it’s time to evaluate your emotional health. You can take an anonymous screening online here: Select a state to find a screening.

If you are suicidal please call the national suicide prevention lifeline: 1-800-273-8255.  The Lifeline provides 24/7 free and confidential support for people in distress, prevention and crisis resources for you or your loved ones.


If you have mild to moderate depression, there are a number of proven natural supplements and modalities that can help.

While I cared for my husband who had younger-onset Alzheimer’s disease, I lived behind a persona of forced cheerfulness because I didn’t want anyone to know that my private world was being deconstructed bit by bit. I went through bouts of depression and grieving periods. I took the supplement St. John’s wort, danced and meditated. I met with girlfriends and did yoga. I also used essential oils and tried to eat well. It all helped.

I gave St John’s wort to my husband, too, until he was in late-stage Alzheimer’s disease. By then he needed a pharmaceutical anti-depressant. But the St. John’s wort worked well for mild to moderate depression.

  1. Here’s what we know about St. John’s wort
  • It is a safe and effective way to treat mild to moderate depression over long periods of time
  • Is similarly effective as standard antidepressants
  • It has minimal side effects when compared to standard antidepressants

One study done on laboratory animals found that St, John’s wort (Hypericum perforatum) has antidepressant properties similar to standard antidepressants. The antidepressant profile of H. perforatum is closely related to the selective serotonin reuptake inhibitors class of antidepressants.

A Swiss study evaluated 440 patients suffering from mild to moderate depression and treated them with 500 mg. of St. John’s wort for up to one year. Although mild side effects such as upset stomach were reported—which may or may NOT have been related to the treatment—the researchers reported that is a safe and effective way to treat mild to moderate depression over long periods of time. They also found that it is especially suitable for preventing a relapse.

A meta-analysis at the Centre for Complementary Medicine Research, Technische Universitaet Muenchen, Munich, Germany analyzed 29 trials (which included 5,489 patients), comparing St. John’s wort with placebo or standard antidepressants. The evidence suggests that the hypericum extracts tested in the included trials a) are superior to placebo in patients with major depression; b) are similarly effective as standard antidepressants; c) and have fewer side effects than standard antidepressants.

2. Support serotonin levels. Omega 3 fatty acids are rich in DHA, the major unsaturated fat in the brain. Your brain is 60% fat and depends on the fat you ingest from food. Healthy fats found in cold-water fish such as salmon, mackerel, sardines, and in olive oil, walnuts, flax and avocado will improve your mood. It is important to cook with a healthy fat such as olive oil, walnut or avocado in order to feed your brain! Canola oil, peanut oil, and safflower are not able to provide you with the fat your brain needs.

As a nutrition educator, I also like to recommend foods that increase the “happy” neurotransmitter serotonin. Whole grains, sweet potatoes, brown rice, oatmeal, buckwheat, millet, quinoa, support your brain’s ability to process more serotonin.

3. Drink water. Your brain needs to stay hydrated. Make sure you drink at least six tall glasses of water every day. When my mom went into the hospital for severe dehydration, among other things, she began hallucinating. A psychiatrist called to tell me “your mom has full-blown dementia.” I said, “No she doesn’t,”  and refused to allow the doctor to prescribe an anti-psychotic prescription. Sure enough, several days later my mom sounded completely normal. Her body had been dehydrated, as well as her brain. The simple habit of drinking water is sometimes all we need to maintain mood and mental health.

4. The Canadian Network for Mood and Anxiety Treatments published a report in the “Canadian Journal of Psychiatry” in 2016 with this conclusion: For the management of mild to moderate depression it says exercise, light therapy, St. John’s wort, omega-3 fatty acids, SAM-e, and yoga are recommended as first- or second-line treatments.

5. A recently published study in the “Journal of Clinical Medicine” concluded that individuals who engaged in a meditative movement practice of Tai Chi, Qigong, or Yoga showed significantly improved treatment remission rates. The researchers conclude that emphasizing the therapeutic effects of meditative movements for treating MDD (Major Depressive Disorder) is critical because it may provide a useful alternative to existing mainstream treatments (drug therapy and psychotherapy) for MDD. Given the fact that meditative movements are safe and easily accessible, clinicians may consider recommending meditative movements for symptomatic management in this population.

6. Music is the universal language as well as one of the most common ways to affect mood.  My husband was never without head phones as he listened to music and wandered through the halls of the memory care home where he lived the last two years of his life. Music made him happy. It makes toddlers spin until they’re dizzy, teens hand bang until their necks get sore, and adults drum their car’s steering wheel. Music also helps decrease anxiety and improves functioning of depressed individuals as found in a meta-analysis that concluded music therapy provides short-term beneficial effects for people with depression. 

Other natural ways to combat depression

7. Create a calm environment. Light candles at dinner, play classical music, have a vase of fresh flowers on the table.

8. Get some physical exercise every day; even just a 20 minute walk helps tremendously.

9. Use aromatherapy oils. For more information about the use of aromatherapy to reduce stress, improve immunity, reduce agitation, and to promote relaxation read chapter 18 “Aromatherapy” in “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia” by Barbra Cohn

10. Vitamin B complex optimizes cognitive activity and brain function, has a positive effect on memory, learning capacity and attention span, and supports a healthy nervous system and a stable mood. Vitamins B6 and B12, in particular, play a role in the synthesis of serotonin, the neurotransmitter linked to improving memory, lifting mood and regulating sleep.

11. Maintain your social connections. Loneliness can actually lead to health problems and mental decline. Join a group—any kind of group: worship,  hiking, scrabble, table tennis, knitting, discussion group or book club. Volunteer at a food bank, soup kitchen or animal shelter. It’s important to stay connected and to feel as though you are a contributing member of society.

12. Sleep well by getting to bed before 11:00 pm, eating your last meal before 8pm, turning off your electronic devices, and eliminating light in your bedroom. If you have trouble sleeping consider using a lavender essential oil spray on your pillow or a sachet of lavender inserted into the pillowcase. There are lots of natural sleep aids available at your local health food store, such as melatonin, calcium/magnesium, valerian, hops, etc. Consult with a nutritional consultant about what might work best for you.

“Surround yourself with people who are only going to lift you higher.” anonymous


 

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

The Stigma of Having Dementia: To tell or not to tell

若い女性One of the hardest things about getting a diagnosis of Alzheimer’s disease is deciding when and whom to tell. When my husband was diagnosed with younger-onset Alzheimer’s disease at 60 years old we were afraid that people would treat him differently, and that our friends would write us off.

Although we were excluded from some social events and intimate dinners by friends who didn’t have the patience to listen to the same story repeated over and over, or by those who simply didn’t know how to act around someone with dementia, most of our friends created a warm, caring cocoon that helped us feel safe and loved.

In the beginning, I refrained from telling our children about their dad’s diagnosis for an entire year, hoping to delay their heartache. Our youngest daughter had just gone off to college and we wanted her to have one year in which she could focus on her studies and friends, without worrying about her parents.

I tried my best to cover up my husband’s gaffes, slips of memory, and awkwardness in social situations. Eventually, we withdrew from our old life because of the challenges that accompany dementia, and we socialized only with family and intimate friends. Our world became increasingly smaller as I became lonelier and more isolated.

When I look back at that time I find it naïve to think that divine intervention or a miracle would cure my husband. After all, I thought, why tell people about his diagnosis when perhaps he’ll be cured as a result of taking myriad nutritional supplements and getting healings from alternative practitioners? It can remain our little secret.

It turns out that according to a survey published in the World Alzheimer’s Report 2012: Overcoming the Stigma of Dementia, we weren’t alone in trying to keep my husband’s diagnosis a secret. (We did tell my parents, his brother, and a few very close friends.) Nearly one in four people with dementia (24 percent) who responded to the survey said they hid their diagnosis, citing stigma as the main reason. They expressed concerns that their thoughts and opinions would be discounted and dismissed, and that they would be treated more positively if they did not reveal their diagnosis.

Why worry about stigma when you’ve got so many other worries?

Identifying stigma is important because it:
• Gets in the way of receiving the proper help and care people with dementia need in order to live life optimally
• Leads to stereotyping and discriminating of the elderly and those with dementia
• Damages the fragile self-esteem of people with dementia
• Is a major cause of social isolation for the dementia patient and his or her family
• Is a barrier to the caregiver’s utilization of community services and obtaining support from family and friends
• Reduces the depression and burden for the caregiver

Doctors keep secrets, too. What happens when the doctor doesn’t reveal a diagnosis?

According to a report released March 24, 2015 by the Alzheimer’s Association, just 45 percent of Medicare patients who’d been diagnosed with Alzheimer’s said they were informed of the diagnosis by their doctor. By contrast, more than 90 percent of Medicare patients with cancer said they were told by their doctor.

One reason doctors often cite for not telling patients is the time constraints of a typically short appointment, says Keith Fargo, director of scientific programs at the Alzheimer’s Association. “It’s difficult to disclose a diagnosis of a fatal brain disease in just a few minutes,” he says. (The average length of time a doctor spends with a Medicare patient is just 8 minutes.)

It’s also hard for doctors to tell patients they have a disease that can’t be stopped or even slowed down by a drug or surgery, Fargo says. And, he says, doctors often fear the emotional reaction an Alzheimer’s diagnosis can cause.

However, the Alzheimer’s Association believes that telling the person with Alzheimer’s the truth about his or her diagnosis should be standard practice. Disclosure can be delivered in a sensitive and supportive manner that avoids unnecessary distress. And based on the principles of medical ethics, there is widespread agreement among health care professionals that people have the right to know and understand their diagnosis

Disclosing an Alzheimer’s diagnosis has several benefits:

  • Allows better access to quality medical care and support services
  • Provides an opportunity for people with a diagnosis to participate in decisions about their care, including providing informed consent for current and future treatment plans
  • Enables the patient to get the maximum benefit from available treatments
  • Increases the chance of participating in clinical drug trials

What can you do?

In response to the World Alzheimer’s Report 2012: Overcoming the Stigma of Dementia, the Alzheimer’s Association came up with these tips for coping with stigma created by people living with the disease. Current and former members of the Alzheimer’s Association National Early-Stage Advisory Group developed these tips based on their personal experiences:

  • Be open and direct. Engage others in discussions about Alzheimer’s disease and the need for prevention, better treatment and an eventual cure.
  • Communicate the facts. Sharing accurate information is key to dispelling misconceptions about the disease. Whether a pamphlet or link to online content, offer information to help people better understand Alzheimer’s disease.
    • Seek support and stay connected. It is important to stay engaged in meaningful relationships and activities. Whether family, friends or a support group, a network is critical.
    • Don’t be discouraged. Denial of the disease by others is not reflection of you. If people think that Alzheimer’s disease is normal aging, see it as an education opportunity.
    • Be a part of the solution. Advocate for yourself and millions of others by speaking out and raising awareness. If you have the time and inclination, write letters to your state representatives, and to your newspaper.

If you or a loved one have received a diagnosis of dementia or Alzheimer’s disease I encourage you to not keep it a secret as I did. Be open and share your feelings with your family and friends. Unfortunately, because Alzheimer’s disease is predicted to become an epidemic for the Baby Boomer generation, almost everyone will be touched by it in one way or other. It’s important that we do our best to educate the public and the best place to start is within our circle of family and friends—-because ignorance leads to fear and understanding leads to compassion.


 

What does marijuana do for Alzheimer’s and dementia patients?

Medical marijuana from the DoctorMy husband passed away eight years ago from younger-onset Alzheimer’s.  Recreational marijuana is now legal in Colorado, but before medical marijuana was legal I’d find a way to obtain it for him to smoke or eat in cookies and brownies. It calmed him down and made him happy. It reduced his anxiety, but it definitely did not help his memory. And that’s not what I was looking for. I just wanted him to feel calmer, and in so doing, it helped me feel more at ease. (Please read Is it a good idea for Alzheimer’s and dementia patients to use marijuana?)

I am not a scientist, but having interpreted studies for the nutritional supplement industry for several decades I can say that it’s possible to find a pro and con study for almost any drug, nutraceutical, herb, vitamin or mineral. Every person is unique, every situation is unique and every environmental factor will influence the outcome of a scientific study in some way. This fact is especially interesting: Because of the federal restrictions, researchers’ only legal source of cannabis for study is a Mississippi farm. But the marijuana plants there are not necessarily identical to those that people get at the dispensary or on the street. Just another indication that studies don’t always demonstrate accurate findings.

Marijuana studies vary in quality and the conclusions are frequently conflicting, according to experts on the issue. What we do know is that marijuana contains hundreds of chemical compounds, the most powerful of which are delta-9-tetrahydrocannabinol, or THC, and cannabidiol, or CBD. THC produces the psychoactive effects — the marijuana high. CBD has a role in pain control and also moderates the effect of THC. But many strains of marijuana in use today have high concentrations of THC and little CBD to balance it. The long-term effects of this shift are unknown.

Here are some recent studies showing the effects of marijuana use on cognition, dementia and heart health.

  1. It’s a known fact that high beta-amyloid—the culprit in Alzheimer’s disease—triggers inflammation and nerve cell death. This leads to memory loss and cognitive deficits. A study published in the journal Aging and Mechanisms of Disease (Amyloid proteotoxicity initiates an inflammatory response blocked by cannabinoids) found that the compound THC (tetrahydrocannabinol) reduced beta-amyloid levels and eradicated the inflammatory response to beta-amyloid, preventing nerve cellular death. While clinical trials are needed to confirm the role THC might play in protecting nerve cells against beta-amyloid, the researchers believe their findings shed more light on the role beta-amyloid plays in Alzheimer’s disease, which could pave the way for new treatments.
  2. Another study examined mice with induced symptoms of Alzheimer’s. The laboratory animals were given a combination of THC and CBD.  The animals displayed improved learning and had less evidence of amyloid clumps in their bodies. Other researchers believe that targeting the CB2 receptor could control the activity of microglia, (a type of cell located throughout the brain and spinal cord) preventing the potentially harmful overactivation of the immune system in the brain.
  3. A Harvard study indicates that medical marijuana has a positive impact on executive functioning in adults. The study points out that medical marijuana products themselves may protect against the executive function deficits that affect most recreational marijuana users because of the inherent differences between medical and recreational products. Medical products are usually low in THC, the primary psychoactive constituent of the plant, and high in other cannabinoids, including CBD. CBD is a non-psychoactive component touted for its therapeutic potential, which may also mitigate some of the negative effects of THC. On self-report questionnaires, patients also indicated moderate improvements in quality of sleep and depression. Obviously, individuals with dementia and Alzheimer’s are not  making important decisions, but this study shows how cannabis can help with sleep and mood.
  4. Research presented in March 2017 at the American College of Cardiology’s 66th Annual Scientific Session showed that using marijuana raises the vascular risks of stroke and heart failure, both major risk factors leading to vascular dementia. Research in cell cultures shows that heart muscle cells have cannabis receptors relevant to contractility, or squeezing ability, suggesting that those receptors might be one mechanism through which marijuana use could affect the cardiovascular system. The study drew data from the Nationwide Inpatient Sample, which includes the health records of patients admitted at more than 1,000 hospitals comprising about 20 percent of U.S. medical centers. Researchers extracted records from young and middle-aged patients—age 18-55 years—who were discharged from hospitals in 2009 and 2010, when marijuana use was illegal in most states. Marijuana use was diagnosed in about 1.5 percent (316,000) of more than 20 million health records included in the analysis. Comparing cardiovascular disease rates in these patients to disease rates in patients not reporting marijuana use, researchers found marijuana use was associated with a significantly increased risk for cardiovascular events such as stroke, heart failure, coronary artery disease and sudden cardiac death. Marijuana use was also linked with a variety of factors known to increase cardiovascular risk, such as obesity, high blood pressure, smoking and alcohol use. After researchers adjusted the analysis to account for these factors, marijuana use was independently associated with a 26 percent increase in the risk of stroke and a 10 percent increase in the risk of developing heart failure.

“Even when we corrected for known risk factors, we still found a higher rate of both stroke and heart failure in these patients, so that leads us to believe that there is something else going on besides just obesity or diet-related cardiovascular side effects,” the lead researcher said. “More research will be needed to understand the pathophysiology behind this effect.”

Conclusion

A lot of clinical research needs to be done in order for the medical community and Alzheimer’s Association to recommend the use of cannabis for Alzheimer’s and dementia.

As with any pharmaceutical, it’s important to understand that no drugs are, as a general rule, 100% safe. But if they can fix something, we take a calculated risk by using them. If cannabis calms down an agitated person, helps with sleep, puts a smile on one’s frozen face, it might be worth trying. If you do decide to give it to an individual with Alzheimer’s, please be cautious. Start with a very small dose in a cookie or brownie and see what the reaction is. Watch for signs of distress and nausea. And hope for some sense of calm and joy.

It helped my husband relax and appear as his old, happy self. But it certainly didn’t help his cognition.


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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” 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.

 

 

 

 

 

 

Are you putting yourself at risk for dementia with OTC medications and prescription drugs?

Reading Instructions from PharmacyA new study links the increased risk of dementia with certain medications. (Anticholinergic drugs and risk of dementia: case-control study) The focus of the study was on drugs that have anticholinergic effects. Acetylcholine is vital to memory and learning. There are lower levels of this neurotransmitter in the brains of people with Alzheimer’s disease. Additionally, animal studies have shown that anticholinergic drugs may contribute to brain inflammation, another risk factor for dementia.

It’s estimated that approximately 50% of adults in the U.S. take one or more medications with an anticholinergic effect. Some of the most common are:

  • amitriptyline (Endep, Elavil), paroxetine (Paxil, Pexeva), and bupropion (Aplenzin, Wellbutin). These drugs are commonly taken for depression)
  • oxybutynin and tolterodine, taken for an overactive bladder, found in Ditropan, Oxytrol.
  • diphenhydramine, a common antihistamine found in: Advil PM, Aleve PM, Bayer PM, Benadryl, Excedrin PM, Nytol, Simply Sleep, Sominex, Tylenol PM, Unisom, etc.
  • Chlorpheniramine, found in Actifed, Allergy & Congestion RElief, Chlor-Trimeton, Codeprex, Efidac-24 Chlorpheniramine, etc.

According to Shelly Gray, professor pharmacy at the University of Washington, and author of  Cumulative Use of Strong Anticholinergics and Incident Dementia” (March 2015, JAMA Internal Med.), the longer people took the drugs and the higher the dose, the higher the risk of dementia, although it’s important to note that short-term use was not linked to higher risks.

Gray suggested that people, especially seniors, who have trouble sleeping find a non-drug therapy for insomnia Celexa and Prozac for depression and Claritin for allergies.  She emphasized that it is important to speak with one’s doctor before stopping a medication that you have been taking.

Natural alternatives

Help for depression

  1. Get some physical exercise every day; even just a 20 minute walk helps tremendously.
  2. Use aromatherapy oils. For more information about the use of aromatherapy to reduce stress, improve immunity, reduce agitation, and to promote relaxation read chapter 18 “Aromatherapy” in “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia” by Barbra Cohn
  3.  I gave my husband Ginkgo biloba for depression (and also took it myself). It helped right up until he was in late stage Alzheimer’s. One word of advice, not all brands are efficacious, so pick one carefully. Also note that it takes about 6 weeks to notice an effect. This is a typical difference of taking a pharmaceutical versus a natural remedy.
  4. Vitamin B complex optimizes cognitive activity and brain function, has a positive effect on memory, learning capacity and attention span, and supports a healthy nervous system and a stable mood. Vitamins B6 and B12, in particular, play a role in the synthesis of serotonin, the neurotransmitter linked to improving memory, lifting mood and regulating sleep.
  5. Omega-3 fatty acids are rich in DHA, the major unsaturated fat in the brain. This long-chain fatty acid provides the necessary fluid quality to the membranes of the nerve cells so that electrical nerve impulses can flow easily along the circuits of the brain. One study found that Alzheimer’s patients given an omega-3-rich supplement experienced a significant improvement in their quality of life.
  6. Maintain your social connections. Loneliness can actually lead to health problems and mental decline. Join a group—any kind of group: worship,  hiking, scrabble, table tennis, knitting, discussion group, or book club. Volunteer at a food bank, soup kitchen or animal shelter. It’s important to stay connected and to feel as though you are a contributing member of society.

Natural sleep aids

  1. Try valerian, passion-flower or skullcap herbal tea at least a couple of hours before bedtime.
  2. A cup of warm milk with a small pinch of cardamom, coriander, cinnamon, turmeric and cumin, and an 1/8 of a tsp of ghee is a tasty and relaxing bedtime drink. The calcium in the milk is a muscle relaxant and the Indian spices help induce relaxation. Experiment to see which spices you like.
  3. Eat a banana. Bananas contain potassium and magnesium that help reduce risk of muscle cramps. These two minerals also support heart health and cognitive function.
  4. A drop in blood sugar during the night can cause us to wake up. Although it’s better to not go to sleep on a full stomach, a small protein snack such as a slice of cheese or smear of peanut butter on a cracker can help maintain balanced blood sugar.
  5. Melatonin supplements help some people, but you might have to experiment with the dosage. I like Natural Vitality’s Natural Calm, a powdered calcium supplement that you put in water or juice. I also like the homeopathic remedy Hyland’s Calms Forte.
  6. Spritz lavender oil on your pillow or put a sachet of lavender flowers under your pillow.

Natural antihistamines

  1. Quercetin is a bioflavonoid that is naturally found in plant foods such as apples, cruciferous vegetables (like broccoli or cauliflower), onions/shallots, green tea and citrus fruits. It stabilizes the release of histamines and helps to naturally control allergy symptoms.
  2. Apple cider vinegar is my new “go to” remedy for almost everything. I take 1 Tablespoon everyday by pinching my nose and drinking water to flush it down. It helps alkalize the body and supports immune function.
  3. Butterbur is a natural herb that is sold as an extract. A study published in August 2005 in Phytotherapy Research found that when compared to an antihistamine, the butterbur extract worked just as well, without the side effect of drowsiness.
  4. Remember that Claritin does not contain diphenhydramine, so use it by all means if these other remedies do not do the trick.

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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” 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.

Can depression be a sign of dementia?

Depressed Senior Woman Sitting OutsideDepression can affect our memory, and it can result from not being able to do the things that were once easy for us, as in the case of Alzheimer’s or dementia. Depression can result from a number of factors and it often appears differently in different people

Some people are able to hide the fact that they are terribly depressed. I did. I tried to put on a happy face during my husband’s illness, but inside I often felt as though I was dying. Following the recent suicides of Kate Spade and Anthony Bourdain, we have to remind ourselves that we usually don’t know what is happening inside someone else’s head.

Before my husband was diagnosed with younger-onset Alzheimer’s disease he was withdrawn and depressed. I didn’t know what exactly what was going on, and he was unable to articulate how he felt. I eventually realized that he was depressed because the things that were once effortless for him to do, such as driving around town or figuring out how much tip to leave in a restaurant, had become difficult.

Alzheimer’s and depression often occur simultaneously, which often makes it difficult for physicians to make a diagnosis without further testing. According to James M. Ellison, MD of the Swank Memory Care Center, Christiana Care Health System, approximately half of individuals affected by Alzheimer’s disease will experience clinically significant depressive symptoms at some point.  Depression can occur during any phase of the illness.

Symptoms common to Alzheimer’s and depression

  • Loss of interest in things that were once enjoyable
  • Memory issues
  • Sleeping too much or too little
  • Social withdrawal or isolation
  • Impaired concentration
  • Eating too much or too little
  • Crying, feelings of hopelessness, despair
  • Unmotivated
  • Lack of energy, lethargy, apathy
  • Irritability
  • Thoughts of death or suicide

A case of the chicken or the egg: which came first, Alzheimer’s or depression?

Some health professionals think that depression can put one at greater risk for Alzheimer’s. There is also a belief that depression is a symptom of Alzheimer’s. In any case, physicians feel that a person with dementia who is depressed can experience a quicker cognitive decline and need to rely more on caregivers.

What to do?

8 natural ways to combat depression.

Antidepressants may not work as well with people who have Alzheimer’s and are depressed. Before resorting to antidepressants and other drugs,  try these options:

  1. Provide a safe and calm environment. Light candles at dinner, play classical music, have a vase of fresh flowers on the table.
  2. Get some physical exercise every day; even just a 20 minute walk helps tremendously.
  3. Use aromatherapy oils. For more information about the use of aromatherapy to reduce stress, improve immunity, reduce agitation, and to promote relaxation read chapter 18 “Aromatherapy” in “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia” by Barbra Cohn
  4.  I gave my husband Ginkgo biloba for depression (and also took it myself). It helped right up until he was in late stage Alzheimer’s. One word of advice, not all brands are efficacious, so pick one carefully. Also note that it takes about 6 weeks to notice an effect. This is a typical difference of taking a pharmaceutical versus a natural remedy.
  5. Vitamin B complex optimizes cognitive activity and brain function, has a positive effect on memory, learning capacity and attention span, and supports a healthy nervous system and a stable mood. Vitamins B6 and B12, in particular, play a role in the synthesis of serotonin, the neurotransmitter linked to improving memory, lifting mood and regulating sleep.
  6. Omega-3 fatty acids are rich in DHA, the major unsaturated fat in the brain. This long-chain fatty acid provides the necessary fluid quality to the membranes of the nerve cells so that electrical nerve impulses can flow easily along the circuits of the brain. One study found that Alzheimer’s patients given an omega-3-rich supplement experienced a significant improvement in their quality of life.
  7. Maintain your social connections. Loneliness can actually lead to health problems and mental decline. Join a group—any kind of group: worship,  hiking, scrabble, table tennis, knitting, discussion group, or book club. Volunteer at a food bank, soup kitchen or animal shelter. It’s important to stay connected and to feel as though you are a contributing member of society.
  8. Sleep well by getting to bed before 11:00 pm, eating your last meal before 8pm, turning off your electronic devices, and eliminating light in your bedroom. Studies have indicated that sleep deprivation can increase risk of dementia and Alzheimer’s disease. If you have trouble sleeping consider using a lavender essential oil spray on your pillow or a sachet of lavender inserted into the pillowcase. There are lots of natural sleep aids available at your local health food store, such as melatonin, calcium/magnesium, valerian, hops, etc. Consult with a nutritional consultant about what might work best for you.

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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” 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.