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.


 

Do you have any of these risk factors for Alzheimers?

Woman with hypertension treating by a nurse

  1. Dizziness when standing up
  2. Reduced levels of plasmalogens
  3. High blood pressure
  4. Obesity
  5. Alcohol
  6. Head trauma
  7. Family history
  8. Smoking
  9. Age
  10. Social Isolation (see Loneliness vs. Aloneness: Why one is dangerous to your health

Most people know that old age is a risk factor for Alzheimer’s disease. In fact, after age 65 the risk of Alzheimer’s doubles every five years. And after age 85 one out of three seniors dies with Alzheimer’s or other form of dementia. You’ve probably also heard that obesity, alcohol consumption, head trauma, family history, smoking, and social isolation put you at increase risk.

But here are a few risk factors that you may not have heard about.

Dizziness when standing up

A new risk factor, and a concern for me personally, is orthostatic hypotension (OH), a fancy name for feeling  dizzy when you stand up. According to a new study, middle-aged people who experience orthostatic hypotension may have a higher risk of developing dementia later in life. The study analyzed data from 11,709 participants without a history of coronary heart disease or stroke. It concluded that individuals who experience a drop in systolic blood pressure (the bottom number) of at least 20 mm Hg or a drop in diastolic blood pressure (the top number) of at least 10 mm Hg on standing are said to have orthostatic hypotension.

Over a 25-year period, 1,068 participants developed dementia and 842 had an ischemic stroke. Compared to persons without OH at baseline, those with OH had a higher risk of dementia and ischemic stroke. Persons with OH had greater, although insignificant, cognitive decline over 20 years. But since the study doesn’t take any other risk factors into consideration, I’m not going to lose sleep over this.

2. We’ve heard how omega 3 fatty acids are necessary for a healthy cardiovascular system. But if your liver doesn’t process these key lipids properly it can spell trouble in your brain.

Reduced levels of plasmalogens — a class of lipids created in the liver that are integral to cell membranes in the brain — are associated with an increased risk of Alzheimer’s Disease, according to new research presented at the Alzheimer’s Association International Conference (AAIC) 2018 by Mitchel A. Kling, MD, an associate professor of Psychiatry in the Perelman School of Medicine at the University of Pennsylvania and the Veterans Affairs Medical Center. A reduced level is also implicated in Down’s Syndrome and Parkinson’s disease.

In 2012, scientists found a 40% reduction in plasmalogen content of white matter in the brain in individuals with early stage Alzheimer’s.

Plasmalogens are created in the liver and are dispersed through the blood stream in the form of lipoproteins, which also transport cholesterol and other lipids to and from cells and tissues throughout the body, including the brain. The researchers measured several plasmalogens including those containing omega-3 fatty acids docosahexaenoic acid (DHA), eicosapentaenoic acid (EPA), as well as an omega-6 fatty acid and closely-related non-plasmalogen lipids, in blood-based fluids collected from two groups. The first group included 1,547 subjects that have Alzheimer’s disease, MCI or significant memory concerns (SMC), and subjects who were cognitively normal (CN) and who are enrolled in the Alzheimer’s Disease Neuroimaging Initiative. The second group included 112 subjects from the Penn Memory Center, including those with Alzheimer’s, MCI, and CN.

“Our findings provide renewed hope for the creation of new treatment and prevention approaches for Alzheimer’s disease,” Kling said. “Moving forward, we’re examining the connections between plasmalogens, other lipids, and cognition, in addition to gene expression in the liver and the brain. While we’re in the early stages of discovering how the liver, lipids, and diet are related to Alzheimer’s disease and neurodegeneration, it’s been promising.”



You would think that taking omega 3s would help, right? Well, according to the study, they don’t. However, plasmalogens from mussels are being sold in Japan and Singapore as a health supplement for Alzheimer’s disease. See Scallop-derived PLASMALOGEN. There is also a Singapore product for sale in the U.S. that supposedly helps your body increase the level of plasmalogens. It’s called NeuroREGAIN. You can read about it here: NeuroREGAIN

According to the first study cited, these products don’t help because of the pH in the
digestive system and the ability to utilize the ingredients.
But it’s up to you. I tried lots of things with my husband, and if he were still alive I’d probably try this product, too.


3. Recently, researchers from the Rush Alzheimer’s Disease Center at Rush University Medical Center in Chicago, IL, set up a study funded by the National Institutes of Health to look for links between blood pressure and physical markers of brain health in older adults. The findings are published in the July 11, 2018, online issue of Neurology. Study co-author Dr. Zoe Arvanitakis explains the types of pathology they were searching for.

“We researched whether blood pressure in later life was associated with signs of brain aging that include plaques and tangles linked to Alzheimer’s disease, and brain lesions called infarcts, areas of dead tissue caused by a blockage of the blood supply, which can increase with age, often go undetected and can lead to stroke, said Arvanitakis.”

Healthy blood pressure is less than 120/80 millimeters of mercury (mmHg). The higher number is called systolic blood pressure, the pressure in the blood vessels when the heart beats. The lower number is called diastolic blood pressure, the pressure when the heart is at rest.

For the study, 1,288 older people were followed until they died, which was an average of eight years later. The average age at death was 89 years. Blood pressure was documented yearly for each participant and autopsies were conducted on their brains after death. The average systolic blood pressure for those enrolled in the study was 134 mmHg and the average diastolic blood pressure was 71 mmHg. Two-thirds of the participants had a history of high blood pressure, and 87 percent were taking high blood pressure medication. A total of 48 percent of the participants had one or more brain infarct lesions.

Researchers found that the risk of brain lesions was higher in people with higher average systolic blood pressure across the years. For a person with one standard deviation above the average systolic blood pressure, for example 147 mmHg versus 134 mmHg, there was a 46 percent increased risk of having one or more brain lesions, specifically infarcts. For comparison, the effect of an increase by one standard deviation on the risk of having one or more brain infarcts was the equivalent of nine years of brain aging.

Those with one standard deviation above the average systolic blood pressure also had a 46 percent greater chance of having large lesions and a 36 percent greater risk of very small lesions. Arvanitakis noted that an important additional result of the study was that people with a declining systolic blood pressure also had an increased risk of one or more brain lesions, so it was not just the level but also the declining blood pressure which was associated with brain lesions.

Separately, higher average diastolic blood pressure was also related to brain infarct lesions. People who had an increase of one standard deviation from an average diastolic blood pressure, for example from 71 mmHg to 79 mmHg, had a 28 percent greater risk of one or more brain lesions.

The results did not change when researchers controlled for other factors that could affect the risk of brain lesions, such as whether they used high blood pressure drugs.

When looking for signs of Alzheimer’s disease in the brain at autopsy, researchers found a link between higher average late-life systolic blood pressure across the years before death and a higher number of tangles, but not plaques. Arvanitakis said this link is difficult to interpret and will need more research.

 The bottom line is be aware of your blood pressure and how to maintain healthy levels.

Natural remedies to support healthy blood pressure and circulation:

  • Magnesium
  • Potassium
  • Vitamin B complex
  • Vitamin C
  • CoQ10
  • Resveratrol
  • Astaxanthin
  • Nattokinase
  • Pomegranate
  • Acetyl-L-carnitine

A healthy heart supports a healthy brain. Here are 12 ways to support both.

12 ways to support a healthy heart

  1. Eat a nutritious, high-fiber, low-fat heart healthy diet.
  2. Include foods high in phytonutrients (the nutrients found in plants)
  3. Get plenty of foods containing omega-3 fatty acids (found in cold water fish). Vegetarians should take flax-seed oil or ground flax seed.
  4. Take nutritional supplements proven to support a healthy heart
  5. Practice a stress reduction technique such as yoga or meditation
  6. Exercise
  7. Stop smoking!
  8. Reduce and/or avoid alcohol
  9. Get an annual physical exam to rule out other health factor risks
  10. Protect yourself from environmental toxins
  11. Drink 6 to 8 glasses of purified, filtered water every day
  12. Get plenty of restful sleep!

 

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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-Helpin 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.

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.

Do you worry about developing digital dementia?

Cropped Group of friends standing on table and browsing in their divices in modern roomI recently listened to a lecture about the dangers of digital dementia, and I think it’s an important topic to explore on the healthycaregiverblog. Essentially, it’s a condition that develops overtime after becoming addicted to and overusing digital technology. This includes smart phones, computers, reading devices, and tablets. The term was coined by German neuroscientist Manfred Spitzer and describes how the result of overuse of digital technology is resulting in the breakdown of cognitive abilities, which first appear as something similar to attention disorder.

Our kids are on their phones too much, they play video games for hours, and studies have shown they are having an increasingly harder time concentrating on schoolwork. An article in Psychology Today (Susan Greenfield Ph.D., 7.1.15) says “We know that action video gaming is linked with greater brain volume in the striatum (1) but this may be at the expense of a reduction in hippocampal volume. (2) Although this proposal requires further investigation, previous research has shown that reduced grey matter in the hippocampus is associated with an increased risk for schizophrenia, post-traumatic stress disorder, depression and dementia, amongst other disorders.”

According to the Kaiser Foundation’s shocking report, elementary-age children use entertainment technology for an average of 7.5 hours a day.

  • 75% of these children have televisions in their bedrooms
  • 68% of two-year-olds regularly use tablets
  • 59% have smartphones
  • 44% have game consoles.

While occasional digital screen time may be okay, many parents rely on them for babysitting and some peace and quiet. An ASHA Survey of the U.S. states that:

“…more than half of parents surveyed say they use technology to keep kids ages 0–3 entertained; nearly 50% of parents of children age 8 report they often rely on technology to prevent behavior problems and tantrums.”

However, just because something is common doesn’t mean it’s okay. What exactly should we be worried about?

Spitzer proposes that short-term memory pathways will start to deteriorate from underuse if we overuse technology. I know for my self that I am addicted to checking my email and friends’ Facebook posts. I have also realized that it is more difficult for me to concentrate on reading the newspaper because I can get the nugget of information more quickly online than reading an entire article. I’m just thankful my overuse of technology hasn’t gotten in the way of my love for reading hand-held old-fashioned books.

But what about putting myself at risk for dementia? Should I worry? Should you worry?

YES!

Here’s why: All digital devices emit high levels of blue light and blue light has been proven to increase cortisol levels.  Cortisol is the stress hormone.  Chronically elevated cortisol levels can lead to shrinkage in some brain areas, most notably the hippocampus, which is what is associated with memory and recall. This is the area first affected in Alzheimer’s disease.  Elevated cortisol is also a major contributor to obesity and Type II Diabetes.  It also disrupts our normal circadian rhythm leading to sleep disorders. Over 25,000 articles have been published in scientific journals over the last 30 years about the effects of EMF’s (electromagnetic fields) on human health.

I think we all need to be cognizant of how much time we spend behind the screen–any screen, including TV. Here are some ways to turn of the technology, re-establish healthy social interaction and get healthier at the same time.

Include your family in setting these parameters

  1. Get outside as much as possible. Walk more. Get a dog so you have to go outside and walk. Exposure to natural sun light is much preferred over sitting in front of a digital device that emits blue light.
  2. Limit the time digital technology is used in your home. Set a specific time and limit that time.
  3. Read more, read together.
  4. Enjoy a joint or individual project. Have a game night or an ongoing puzzle set up in the family room.
  5. Make it a strict rule: no phones or TV at the dinner table. That includes at  restaurants.
  6. Learn games on non-electronic formats. For instance, instead of learning how to play chess on a computer, get a chess set and set up the board. Leave it out; don’t put it away. It’ll encourage your family to play more often.
  7. Write a play and then act it out for the family or neighborhood
  8. Learn how to play a musical instrument.
  9. Join a sports team.
  10. Walk a neighbor’s dog or babysit.

You will enjoy more social interaction, feel happier, healthier and more at peace with yourself and the world around you.

 

  1. Kühn S, Romanowski A, Schilling C, Lorenz R, Mörsen C, Seiferth N, … & Gallinat J. (2011). The neural basis of video gaming. Translational Psychiatry, 1(11), e53
  2. West GL, Drisdelle BL, Konishi K, Jackson J, Jolicoeur P, & Bohbot VD. (2015). Habitual action video game playing is associated with caudate nucleus-dependent navigational strategies. Proceedings of the Royal Society B, 282(1808)

 

 

Keep your cool with these 10 summertime eating tips

20bb6fee-b988-4716-bd91-23dff6882655It’s summertime and the livin’ is easy—or at least we’d like it to be. This summer is especially hot all over the world. If you’re tired and stressed out from caregiving, these tips will help you stay cooler in summer. The same information applies to those we care for. . . and for everyone.

According to the ancient Indian system of Ayurveda our body consists of three main elements or doshas—Vatta, Pitta and Kapha. Pitta consists of water and fire. It’s hot, so during summer when the temperature rises we want to eat cooling foods. Eating cooling foods not only keeps us from overheating, it reduces the tendency to get irritable, impatient and angry.  (Chapters 20 and 31 in “Calmer Waters: The Caregiver’s Journey through Alzheimer’s and Dementia” contain more information about ayurveda and nutrition that calms down the nervous system and supports immunity.)

  1. First and foremost, stay hydrated. It’s especially important to make sure you and your loved ones are getting enough liquids because when we forget to drink we can become dehydrated quickly, which leads to other health problems. It’s also crucial to keep the brain hydrated in order to maintain mental alertness. Drink plenty of water and stay away from carbonated and caffeinated drinks. Herbal teas, and fresh fruit or vegetable juices are great in summer. Just remember that fruit juices are high in sugar and calories. Coconut water is cooling and helps to replenish electrolytes, which is especially important during and after an illness.
  2. Enjoy the bounty of summer fruits. Peaches, apricots, cherries, watermelon, cantaloupe, and berries are especially good for helping the body reduce the fiery heat of summer. Juice them or make popsicles with watermelon juice or any other combination including yogurt. These are especially helpful to keep seniors hydrated and for people who have trouble chewing.
  3. According to Ayurveda, some of the recommended summer vegetables include cucumber, green leafy vegetables, green beans, squash, zucchini, asparagus, beets and eggplant. Juice a leafy green with cucumber and beets for a delicious cooling drink.
  4. Sprinkle on the herbs and spices. They’re easy to use and contribute added flavor and antioxidants to your diet. Cooling spices include cardamom, coriander, fennel and tumeric. Cooling herbs include cilantro, mint and dill.
  5. Avoid hot, sour and salty foods including fermented food, red meat, and greasy and spicy food. Excess pitta aggravates the tendency towards heartburn and gastric hyperacidity.
  6. Here’s some good news—Ayurveda recommends ice cream during the hot summer months! So by all means, enjoy! Dementia patients are especially fond of ice cream. If the person you are caring for refuses to eat or eats very little, try serving ice cream. It contains protein, calcium and calories, and it’s easy to serve and eat. If weight gain or cholesterol is a concern, select a dairy-free version of America’s favorite dessert. Rice Cream, Coconut Bliss and Soy Delicious make delicious non-dairy, frozen desserts.
  7. Cooling grains include amaranth, barley, quinoa, rice, tapioca and wheat. Use them in salads mixed with veggies. One of my favorites is quinoa salad. Cook 1 cup of quinoa. (Be sure to rinse it first to remove saponin, a naturally occurring chemical that coats each grain to ward off insects. It has a strong, bitter flavor. And yes, it is a pain to rinse quinoa. First soak it and then place it in a very fine mesh strainer and rinse.)  Sauté onion and zucchini, add a handful of fresh corn cut off the cob, mix with the quinoa. Add fresh tomatoes, black beans, and a dressing made with olive oil and balsamic vinegar. Delicious!
  8. Make your own granola. Once you do, you’ll never go back to buying store-bought granola, which is typically filled with sugar. Plus, it is expensive. Oats, almonds, and coconut are all cooling. First toast 1/2 cup of slivered almonds on a cookie sheet in the oven. Watch carefully so they don’t burn. Add to 4 cups of oats, along with 1/2 cup coconut flakes, 1/4 cup coconut oil, 1/4 cup maple syrup. Add 1/2 tsp of cinnamon, if desired. (Cinnamon is warming, but a little bit won’t hurt.) Stir and bake at 325 degrees for about 20 minutes. Add raisins if desired.
  9. For added protein, top your salads with these cooling legumes: garbanzo, pinto, white beans, azuki beans, and black-eyed peas.
  10. If you eat meat try to avoid beef, chicken, and pork during the hot months and use cooling meats such as buffalo, turkey rabbit or venison instead.

Happy eating. . . and stay cool!

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.

Men: Are you taking care of yourself?

仲の良い父と娘Happy Father’s Day to all men who play a caring role in the life of a child, and kudos for  all that you do. But let me ask you this: Do you take care of yourself? Typically, most men take better care of their cars than themselves. Most men wait until a symptom pops up, and by then the illness or disease has progressed.

I’m not going to give you a lecture about how you should make an appointment tomorrow to get a routine preventative check-up, but hopefully after going through the following list, you’ll see my point.

Take this quiz to see how much you really know about men’s health. 

1) As a man gets older, it’s almost inevitable that he:

  1. loses interest in sex
  2. has a difficult time maintaining an erection
  3. doesn’t need to exercise as much
  4. develops an enlarged prostate

2) To detect prostate cancer early, a man should:

  1. have a colonoscopy
  2. practice a monthly self prostate examination
  3. have a digital rectal exam and PSA blood test
  4. have a sonogram of his prostate every year

3) Impotence can result from:

  1. drinking too much alcohol
  2. recreational drug use (smoking marijuana)
  3. high blood pressure
  4. diabetes
  5. all of the above

4) 75% of prostate cancer occurs in:

  1. Hispanic men
  2. men over 65
  3. men who eat a low-fat diet
  4. men with low testosterone levels

5) The most common cancer among men is:

  1. prostate cancer
  2. lung cancer
  3. skin cancer
  4. colon cancer

6) Which racial/ethnic group is most likely to develop prostate cancer?

  1. Caucasian
  2. Asian
  3. Hispanic
  4. African-American

7) A common risk factor for developing prostate cancer is:

  1. lack of exercise
  2. high fat diet
  3. high testosterone levels
  4. growing older
  5. all of the above

8) What beverage has been found to support prostate health?

  1. beer
  2. green tea
  3. orange juice
  4. red wine

9) What common food has been found to support prostate health?

  1. oranges
  2. tomatoes
  3. beef
  4. cheese

10) Which disease is considered the number one cause of death among American males?

  1. diabetes
  2. prostate cancer
  3. obesity
  4. cardiovascular disease

11) Cardiovascular disease kills far more men and women than cancer.

  1. True
  2. False

12) Eating a diet that includes plenty of pasta, potatoes and white rice can reduce your risk of heart disease.

  1. True
  2. False

13) The heart muscle is totally responsible for maintaining normal blood pressure levels.

  1. True
  2. False

14) Cardiovascular disease is hereditary and cannot be prevented.

  1. True
  2. False

15) CVD starts in the teenage years.

  1. True
  2. False

16) An aspirin a day is the best way to thin the blood, in order to reduce the chance of stroke and heart attack.

  1. True
  2. False

17) High blood cholesterol is the best overall indicator of cardiovascular disease.

  1. True
  2. False

18) Statistics show that the stress of caregiving can result in chronic disease for the caregiver and take as many as ten years off one’s life.


Answers:

1) d

2) g

3) e- all of the above. Not smoking, eating a healthy diet, not overdoing it when it comes to drinking, regular exercise, getting enough sleep, will all help support normal blood flow. Also, Ginkgo biloba extract helps support normal blood flow to the penis

4) b. Simply growing older increases a man’s risk. Seventy-five percent of prostate cancer occurs in men over 65 with only 7% diagnosed in men under 60 years of age.

5) c. Skin cancer is the number one form of cancer in the US. Prostate cancer is the most common cancer among men next to skin cancer and the second leading cause of cancer death in men after lung cancer.

6) d. African-American males have the highest incidence of prostate cancer, a third higher than white males, and African-American males are also twice as likely to die from it.

7) e. Also, men who have higher testosterone levels, or who eat a high fat diet have been shown to have an increased risk of developing prostate cancer.

8) b. Green tea is chock full of antioxidants that have been shown to reduce cancer. Red wine, on the other hand, is a natural preventative against cardiovascular disease.

9) b. Tomatoes contain lycopene, especially potent in the fight against prostate cancer.

10) d. Among major disease groups, heart disease is the leading cause of death within the elderly population.

11) True. Although cancer fears are more common, cardiovascular disease is the chief cause of death and disability in the United States today. It affects close to 60 million Americans and every year more than a million people suffer from new or recurrent heart attacks. In fact,every 20 seconds a person in the United States has a heart attack, and one-third of these attacks leads to death. The American Heart Association calls CVD “the silent epidemic.”

12) False. For years we were told that a heart-healthy diet included foods low in fat and high in carbohydrates, such as fruits, veggies, legumes, grains and other starches. But now experts are saying that overloading on carbohydrates (especially the wrong kind) can make you fat and increase your risk of heart disease. Eating foods with a high glycemic index—such as cookies, cake, candy, bagels, pasta, white rice, refined bread and grains, potatoes and potato chips—raises blood sugar and insulin levels, which in turn stimulates the production of triglycerides (blood fats that raise heart disease risk).

13) False. Your kidneys, blood vessels and heart all control blood pressure. In order to maintain healthy blood pressure and keep blood moving, the walls of your arteries, capillaries and veins need to be flexible and strong. Research has shown that nutrients such as Co-Q10, hawthorne, red wine polyphenols, notoginseng (a cousin of ginseng), and astragalus help strengthen blood flow throughout the entire body, maintaining healthy blood pressure. In addition, EDTA (the main ingredient in Health Freedom Nutrition’s Cardio Clear) removes heavy metals and toxins that interfere with the production of nitric oxide, a major factor in controlling blood pressure.

14) False. Even if there’s heart disease in your family, and even if you have high cholesterol, combining an regular exercise program with and a Mediterranean based diet and healthy lifestyle (no smoking, reduced alcohol consumption) can dramatically reduce your risk of heart attack and stroke.

15) True. Dr. Scoot Calig, M.D., a pediatrician at West Hills Medical Center and an assistant clinical professor at the University of Southern California, Los Angeles, says, “It’s important to keep in mind that the development of cardiovascular disease begins in the teenage years. Studies have shown that by that time, arterial plaque formation is well under way.”  Just another reason to exercise, eat a healthy diet, and take nutritional supplements such as oral EDTA to strengthen the heart and arteries and clear out toxic metals that inhibit the production of nitric oxide.

16) False. For years, aspirin has been prescribed after a heart attack, in order to avoid a subsequent heart attack. And now, a panel of experts is recommending aspirin as a precaution against heart disease for all at-risk, healthy adults over 40. But Alfred Berg, M.D., of the University of Washington, head of the panel says, “Do not assume that an aspirin a day is without risk.” Aspirin can cause intestinal bleeding and hemorrhagic stroke. Herbs such as hawthorne, nattokinase, garlic and Ginkgo biloba have the ability to thin the blood like aspirin, without damaging the esophageal and intestinal linings, or exacerbating ulcers.

17) False. Homocysteine—a by-product of the amino acid methionine— is a more sensitive indicator of cardiovascular health than cholesterol. Too much of it increases injury to arterial walls, as well as accelerates oxidation and accumulation of cholesterol in blood vessel. The good news is that folic acid, and vitamins B6 and B12 help keep homocysteine levels low!

18) True—for men and women! Click here to read 16 Stress-busters to nourish your body, mind and soul

Have a happy Father’s Day, and please take care of your health so you can continue to enjoy life and be a support and friend to everyone who loves you.


For dozens of general health tips and caregiving help read Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia  by Barbra Cohn.image

12 ways to protect yourself and loved ones from Elder Abuse

senior woman with her hands signaling to stop over light backgroundWorld Elder Abuse Awareness Day is June 15th and 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.

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 claimed that she was being held in jail and needed bond money. This family emergency scam has been going on for years.

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.

Another friend’s mother lived in Florida where she had round-the-clock nursing care in her own home. At the end of her life she suffered from dementia and was frail and bed-ridden. When Cheryl (name has been changed) went for a visit, she discovered that her mother had been cruelly beaten, and even though her two caregivers were women, it was apparent there she had been sexually abused. The poor woman’s genital area was swollen and bruised.

Physical abuse is not the only type of abuse targeted at the elderly. I know of two families who lost their inheritance because of financial fraud and theft. In one family the elderly father was cared for by a young woman who convinced him to marry her in order to be the beneficiary of his estate. The man’s family was unable to get a penny or access to the family home they had grown up in. Another elderly man assigned a trustee to overlook his financial affairs. The trustee stole his money and even though one of his adult children is a lawyer, the family was unable to recover a penny of their inheritance.

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, under funded nursing homes.

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.

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.

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:

Adult Protective Services (APS) is there to help. The APS mission is to ensure the safety and well-being of elders and dependent adults. Unfortunately, it is estimated that millions of U.S. elders, from all walks of life, face abuse and neglect every year. Anyone can be victimized. However, there are things you can do to help protect yourself from abuse and neglect…

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 Alliancea 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.

You have a dementia diagnosis, now what?

Senior doctor talking with patient and tablet in officeJune is Alzheimer’s & Brain Awareness Month. It’s a good time to have a physical exam, especially if you are worried about your memory not being as sharp as it used to be or if you’re having trouble coping with daily life. If you’ve noticed that someone close to you is showing signs of withdrawal, depression or confusion, please strongly suggest that he or she make an appointment for an exam, too.

Here’s the scenario of how my husband Morris and I received his diagnosis. I’ve provided a list below it to help you tread water when you feel as though you’re drowning.


There were several indications that something was wrong with my husband two years before he was diagnosed. This tall, good-looking man, a graduate of the Wharton School of Business at the University of Pennsylvania, was having trouble calculating how much tip to leave a waitress. When we went to Spain for our twenty-fifth anniversary, Morris couldn’t figure out how much money the hotel would cost in dollars. This man, who once memorized train and airplane schedules without even trying, followed me around the city like a puppy dog as we boarded a subway or bus en route to tourist attractions.

That following fall—our daughter’s last year in high school—Morris couldn’t give directions to a friend who was taking the SAT at the high school my husband had attended in Denver. I got out the map to help him, but he couldn’t read the map. That was the moment I knew something was very wrong. When he left for a road trip to California with our son and forgot his suitcase, I sat on the stairs and cried. I couldn’t deny it any longer. I had a strong suspicion that Morris had Alzheimer’s disease, and although I pleaded with him for two years to see a neurologist, he refused.

Finally, he agreed. The doctor (I’ll call her “Dr. Fitzgerald”) asked Morris why he had come in. “My wife thinks I might have Alzheimer’s disease,” he said.

“You wouldn’t be able to drive here yourself if you had Alzheimer’s,” she replied.

Nonetheless, Dr. Fitzgerald gave Morris the Mini-Mental State Exam (MMSE, a thirty point questionnaire used to screen cognitive impairment), asking questions such as, “What are the year, season, date, day, and month?” and progressing to more difficult questions that included counting backward from one hundred by serial sevens. I don’t know about you, but I’d probably be slow on the draw to count backward by sevens. At least I’d have to stop and think about it before responding. Morris botched up that question, and he wasn’t able to draw the face of a clock either. The concept of time was already an elusive abstraction.

Dr. Fitzgerald ordered a blood work-up to rule out an organic problem such as hypoactive thyroid—which can cause memory problems—and an MRI scan (magnetic resonance imaging) to rule out a brain tumor. To tell you the truth, I was hoping for a brain tumor because at least you can take the bull by the horns and really go at the darn thing with radiation and a scalpel. Well, there was no brain tumor and his blood panel looked just fine.

A week later, just as we were investigating the cost of long-term health insurance, Dr. Fitzgerald called to ask Morris to bring in his wife to the follow-up appointment. I’m sorry to say that one of the biggest mistakes I’ve ever made was to schedule that appointment without first buying long-term care insurance. Once you get a diagnosis such as Alzheimer’s, there’s no way you’re going to qualify for long-term care insurance, which could potentially save a family thousands of dollars in catastrophic health care costs.

In the early afternoon of January 3, 2001, Morris and I sat in a dimly lit exam room on wooden frame chairs with hunter green cushions on the seat and back. He wore a sweater woven from various shades of blue and gray that highlighted his eyes. We waited for the doctor to knock on the door, the way they usually do. Morris didn’t appear nervous; probably because he didn’t think there was anything wrong with him. But my stomach was wound tight from anxiety and my lungs were working hard to expel phlegm. It didn’t help that the stale re-circulated air had a metallic odor of fear that was probably generated by patients who had received bad news.

Dr. Fitzgerald finally came in and sat on Morris’s left. She had cropped hair and spoke in a blunt, choppy cadence that matched her no-nonsense appearance. Without much of an introduction, the doctor asked me a few questions about Morris, speaking as if he were invisible.

“How is his driving?” she asked.

“He tends to get lost driving in familiar neighborhoods,” I responded, noting the twitch in Morris’s right cheek. I felt my lungs squeeze, and a high-pitched wheeze escaped from my chest.

“Here is the Mini-Mental State Exam Morris took the last time we met.”

His drawing of a house looked like a dilapidated mine shaft. Without waiting for a response, Dr. Fitzgerald turned to Morris and said, “You have Alzheimer’s disease.” Morris froze and his face turned white, while I burst out crying.


I hope that if you ever get a diagnosis such as Alzheimer’s, Parkinson’s, vascular dementia or a similar devastating disease, your doctor is compassionate and gentle about the delivery of the news that will forever change your life and the lives of your loved ones. I wrote “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” after caring for my husband for 10 years, in order to help other caregivers feel more confident, happier, healthier, and deal with feelings of guilt and grief.

For hundreds of other caregiving tips, find “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” on AmazonBarnes and Noble, at other fine book stores, and many libraries.

 

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What can and should you do after getting a diagnosis?

It is understandable that you will have many conflicting feelings such as disbelief, anger, depression, sadness, fear, grief, and shock. You may even feel relieved that you finally know why you are not feeling like yourself. It can be helpful to talk about what you’re feeling and thinking rather than to keep things bottled up inside. In addition to talking with people who are close to you, you can contact the Alzheimer’s Association® at 1.800.272.3900.

You don’t have to tell everyone about your diagnosis if you don’t want to. But if you are still working, or if your boss has questioned your work habits, etc., it’s a good idea to inform him or her of your diagnosis, especially since you might be eligible for  Social Security Disability Insurance.

Your health is more important than ever

Just because you receive a diagnosis doesn’t mean you should give up trying to live a healthy life. You probably still have a lot of years ahead of you, so enjoy them as much as you can. Continue to get daily physical exercise such as walking, biking, hiking, dancing, swimming. Eat a Mediterranean based diet that includes lots of fresh veggies, fruits, nuts,  fish, whole grains, avocado and olive oil.

Stay socially connected as much as possible. It’s normal to feel depressed and it’s okay if you don’t feel like “going out” as much as you used to. But it’s important not to isolate yourself. Keep golfing, bowling, playing cards, as much as you can. Continue to meet with friends for lunch or a movie. If you feel the need to talk, make an appointment with a therapist who specializes in helping people with dementia.

Visit museums, spend time with grandchildren, get a pet (if you don’t already have one), attend an Alzheimer’s Association Memory Cafe. The Alzheimer’s Association’s Memory Cafés offer a fun and relaxed way for people living with early-stage memory loss to get connected with one another through social events that promote interaction and companionship. This is a place where the care partner can receive information while connecting and sharing with other people in similar situations.  Keep busy!

 Legal and Financial Planning for the Future

This is the time to start planning for the future. Taking the time to make decisions about matters that will affect your health care and your finances before you are unable to manage them is one of the most important steps you can take for yourself and your family.

There are many legal and financial documents that will help you formalize your plans and wishes such as:

Durable Power of Attorney

In this document you appoint a person you trust to make legal and financial decisions on your behalf, if you become unable to do so for yourself.

Health Care Proxy

In this document you appoint a person to make medical decisions on your behalf, if you become unable to do so for yourself. It’s important that you speak with the person you appoint about the kind of medical care you would or wouldn’t like so that they can carry out your wishes.

Living Will

Some people also want to make a Living Will in addition to having a Health Care Proxy. In this document, you can state your wishes about end-of-life care.

Last Will & Testament

The purpose of this document is to designate how your assets will be distributed after your death. This will must be completed with the assistance of an attorney.

All the best to you and your families. 

With love,

Barbra Cohn