As we put more emphasis on treating the person with Alzheimer’s, and not just searching for a cure, we find more professional attention focused on managing and alleviating the symptoms of the disease, thereby improving quality of life. One symptom receiving such attention is the sleep disturbances that often accompany many forms of dementia
Once we had a good start on the website, we began a search for games, puzzles, alarms, and other products that all of our research indicated would benefit Bernice and others with Alzheimer’s disease.
That was not as easy as we thought it would be!
I’m sure I’m not alone in being protective of the person I am taking care of. A person with Alzheimer’s disease is vulnerable and they need our protection.
Bernice was a mentor of mine who had no other family. We knew each other for 30 years and she became like family, watching our children grow up, coming to our house for holidays and just being a part of our lives. When dementia crept into her life, my husband and I became her guardians.
As her dementia progressed, I became increasingly concerned about her living alone. I was anxious to get her out of her condo. She needed to be somewhere where she could be looked after. I couldn’t seem to get her doctor on board with me. No one else thought it was a problem that she was living alone at age 93, driving her car, often getting lost, only eating frozen pizza and ice cream.
For seven years prior to her move she and I had looked at communities for her to move to. She would often call me to say that she had seen a new place in the newspaper and that we should go look at it. Off we would go to visit yet another community. We would have lunch and make a day of it. Of course there was always something wrong with each place we visited, Bernice was very particular. There weren’t enough closets, or she noticed a little tear in the wallpaper, an indication of poor management. Truth be told, she just wanted to spend the day with me; she had no intention of moving.
During a hospitalization for leg pain, which ended up being sciatica, she was given a psychiatric evaluation. Normally one would not think that a psychiatric evaluation was required for leg pain, but when the patient gets hysterical because they would not let her write a check so she could leave “that hotel”, one might get transferred to the psychiatric unit. After the evaluation showed significant cognitive impairment, the doctor told her he wanted her to go “for a rest”, which was code for “we won’t discharge you to go back to your condo”, and she agreed that she was very tired and could use a rest. Thank God.
We had already looked at every available independent living and assisted living facility in the area. The doctor didn’t tell me I should move her to an Alzheimer’s assisted living facility. At the time I didn’t even know there was such a thing, so the first move was to a regular assisted living facility. There were other residents there who had dementia, but in my (now learned) opinion, the staff was not really trained to care for them.
She lasted 10 months in the first assisted living facility. She had a studio apartment on the fourth floor. Never once did she know how to get to the elevator to go down for meals. I was there every day diffusing some crisis. A crisis to her would be if she thought someone had stolen her Band-Aids or when she convinced the very nice, but inexperienced 19 year old desk clerk to order a hamburger delivered from the nearest restaurant because the food in the dining room was being poisoned.
The staff physician at this first assisted living facility was the one who recommended that it was time to move to an Alzheimer’s assisted living community.
I was afraid to tell the new place about all the stunts she had pulled in the first place. Like the time they called me at 6:30 a.m. to tell me they found her unresponsive sitting on the toilet and had called the paramedics. Apparently she wanted some Tylenol and the meds weren’t being distributed until 8:00 a.m., so Bernice had pulled the call cord in the bathroom and when the aide arrived, she hung her head and would not respond to any questions. However, when the paramedics came and she realized she might be going to the hospital, she suddenly perked up. The paramedic got on the phone with me and said that she seemed fine; all she wanted was her Tylenol. No trip to the hospital that day!
I need not have worried about the staff at the Alzheimer’s assisted living community. They seemed to have heard all the stories before; they were clearly well trained and prepared. After I got her settled in that first day, they told me not to come back for two weeks. Two weeks? I didn’t know what to do. I had spent years and certainly the last 10 months planning her every day, activity, appointment, haircut, shopping trip. They wanted her to learn to depend on them, I got it. But it was still hard. I called the staff every day the first week. And every day I discovered she was just fine. I was learning to let go.
The final letting go was April 27, 2011, two weeks after her 98th birthday. My dear Bernice passed on and I believe is restored to her “pre-Alzheimer’s” self. I miss her, but I have a life time of memories, enough to last me till I see her again. It was my privilege and honor to have been her caregiver and her friend.
Written by Holly Schmid
Holly Schmid is a caregiver and the owner of Best Alzheimer’s Products. Her journey of caring for a family friend, Bernice, and finding activities that she would like led her to develop a solution for other caregivers. In an effort to improve the quality of life for people with Alzheimer’s disease, and those who care for them, Holly developed Best Alzheimer’s Products. The site offers an array of useful information, thoughtful advice, and 100s of products including games, books, DVDs and music.
Detailed direction for creating a Memory Book. This is an easy and interactive way to preserve a person’s history while creating a treasured heirloom for family and friends. By Connie Lucas of the Alzheimer’s Association, Greater Iowa Chapter.
As Bernice’s caregiver, friend, and power of attorney, I was responsible for decisions made for her care. I never really considered what would happen when the need for emergency medical care for Alzheimer’s arose. An emergency trip to the hospital can be traumatic for you as the caregiver as well as the person in your care. After several falls that resulted in trips to the hospital over the last three years, I finally had a system figured out that worked for me.
The Video Respite series provides you with a video tool to improve the quality of life for the person or the people in your care while providing you with a way to improve your own quality of life by providing a respite from the challenges of caring.
Professional caregivers rave about the effectiveness of Twiddles®. Having something to hold and manipulate, something to “twiddle” or fidget with, has a calming effect on a person who has dementia. The textures, the gadgets, the warm coziness of the Twiddles® are all there for just that reason. The stimulation they provide truly adds to the individual’s quality of life.
Can we prevent Alzheimer’s disease?
Just as there is no cure, no magic bullet exists to prevent Alzheimer’s disease. On the other hand, there is compelling evidence that we can do certain things to delay the onset of the disease and even slow its progression. If we follow enough of this advice, perhaps we can avoid it altogether.
It is becoming evident that lifestyle plays a big role in many diseases. What we eat, where we live, what we do with our leisure time: all of these are now known to play a very significant role in how likely we are to get cancer, heart disease, diabetes, and other of our most feared diseases. The same is true of for preventing Alzheimer’s. Our genetics may be a big factor in whether or not we will eventually be affected by it, but our lifestyle and other environmental factors, factors we can control, are also potential contributors. There is less evidence in the professional literature that these steps will prevent dementia, but environment and lifestyle are probably to some degree causal factors in almost all forms of dementia.
Read more about what we might do to prevent Alzheimer’s.
Obviously, right? More and more, diet is understood to be the most important element in everything health related. To optimize good health and minimize bad health we look first to our diet. And a diet that will most likely keep Alzheimer’s away is, essentially, the same as the one that will keep your heart healthy, your cholesterol level down, cancer at bay, and your glucose levels in balance.
General dietary recommendations to improve anyone’s health:
- Water – Any healthy diet should begin with pure and clean water. Tap water often (usually?) contains undesirable elements and bottled water is unregulated and usually bottled in plastic. Filtering your own water is probably a better option. Water filters are available in a broad price range – and range of effectiveness. A cheap water filter is probably not much better than no water filter. Buy the best one you feel you can afford, and if you have a favorite, please let us know.
- Whole Foods – Processed foods, like white sugar and flour, are responsible for many health problems. Eat whole grains and fresh fruits and vegetables whenever possible. There is a raging debate about organic vs. “conventionally grown food. In our view, organic is best, since these foods will not contain pesticides and other chemicals often found in food, and are more nutritious.
- Minimally Processed Foods – In general, the more processing a food undergoes, the more that is added to it or taken out of it, the less healthy it will be. Look particularly for sugars (sugar, sucrose, glucose, fructose, corn syrup, high fructose corn syrup), hydrogenated and partially-hydrogenated oils, and ingredients you’re not sure how to pronounce. Also minimize or eliminate junk food including fast foods. Even the “healthy” food at fast food restaurants is not all that healthy. It is nearly impossible to eliminate all processing, all junk, but the less of this stuff we eat, the healthier we will all be.
- Vitamins and Supplements – Dietary supplements are unnecessary if you maintain a good diet. Of course, but that is one big “IF.” A good diet, a proper diet, is almost impossible given the food supply chain with which we have to contend. If you choose to supplement your diet, look for natural ingredients, and steer clear of inexpensive products. Bargain supplements is one of those instances in which cheaper is more expensive.
- Avoid Practices and Substances that Rob Nutrients
- Stress – physical, emotional, mental
- Rich and fatty foods
- Refined foods
- Intoxicants, including caffeine, alcohol, and tobacco
- Chemical additives
And remember what your mother told you; don’t hurry and chew your food well. Don’t overeat or eat late at night.
- Eat Locally –Whenever possible, eat foods that were grown or produced in your geographical region. Better yet, grow your own! There are real health as well as economic benefits to doing this.
- Avoid Aluminum –Although there is no proven connection, it has long been suspected that aluminum might contribute to Alzheimer’s disease.
- Avoid GMOs and Genetically Modified Foods –There is not much evidence available one way or another on the health effects of “frankenfood”, but historically, every time a certain food is modified from its original, natural state, it seems eventually to be found to contribute to cancer, diabetes, or other diseases. This recommendation is still somewhat subjective, but there is a fast-growing group of scientists, health and food experts, and people concerned about their health that are advising caution in the use of these foods. As we see it, it’s one of those, “until we know more, why take a chance?” situations, or let’s see proof (absolute) that the modified foods are safe, not accept and eat them until we have proof that they are not!
In addition, there are several specific dietary recommendations for Alzheimer’s prevention:
- Antioxidants — Get as much of this as you can by eating fresh, whole vegetables and fruits, and from quality juices. Antioxidant supplements should be from natural sources.
- Cold Water Fish and Fish Oil — Recommended are cod, salmon and flounder. Larger fish at the top of the food chain, like shark, swordfish, and even tuna tend to have higher levels of mercury, so eat those very sparingly.
- Folate — A water soluble B Vitamin, folate occurs naturally in micro-algae, sprouts, lettuce and leafy vegetables, asparagus, whole wheat, legumes and nuts, melons, strawberries, as well as in other fruits and vegetables. Folic acid, the synthetic form of folate, is used to fortify breads and cereals.
- Green Tea and Black Tea — Both are high in antioxidants and contain a compound, EGCG, shown to decrease production of the protein responsible for forming the plaques seen in the brain of people with Alzheimer’s. Studies used doses far higher than what you would get in a cup of brewed tea. EGCG is also thought to prevent some forms of cancer, so unless you really don’t like tea you should keep plenty of these varieties around.
- Mediterranean Diet — The typical diet from most areas around the Mediterranean sea contain an abundance of the ingredients and foods listed above. And a little red wine. A review of a dozen studies that investigated the effects of the Mediterranean diet found health benefits including a 13% reduction in Alzheimer’s disease.
- Turmeric — A growing body of evidence links turmeric, one of the main spices in curry, to a lower incidence of dementia. There are also laboratory studies that show curcumin, an ingredient in turmeric, blocks the formation of the Amyloid plaques that are so closely associated with Alzheimer’s disease. Incidentally, fresh turmeric is becoming increasingly available in many grocery stores. Furthermore, it adds a nice flavor to many foods. It could be just the thing for taste buds that are not as sensitive as they once were. Read more about the health benefits of turmeric.
- Apple Juice — Recent evidence has found that apple juice improves cognition and can delay the onset of, and may even work to preventAlzheimer’s disease.
- Coconut Oil — Here’s another food that is beginning to get a lot of attention for its health benefits in general, and its effect on the brain specifically. Be a little skeptical about what is being said about this oil that was, until recently, thought to be very unhealthy. Now it is considered by some to be the healthiest oil we can use and the only oil we should cook with. There are some people who claim that a spoonful of coconut oil a day has turned around the progression of Alzheimer’s disease, that people with advanced Alzheimer’s seem to be getting better! You can find testimonials, even some in video form, on the internet. Again, be wary, but a spoonful of the stuff each day isn’t going to hurt. Please contact me if you have any information about this, first hand or otherwise, as I am just beginning my research.
Exercise Your Body
Another no-brainer! Diet and Exercise. The mantra of the fit generation. Diet and exercise may be our strongest defense against Alzheimer’s disease and dementia. And it does not matter when you start. That is, whenever you start exercising and eating right you will begin preventing Alzheimer’s, or at least you’ll begin decreasing your chances of getting it. So start today.
A report from The Mayo Clinic that summarizes several recent studies concludes that exercise might be our best bet to prevent Alzheimer’s disease.
Don’t forget to protect your body while getting it into shape. Head trauma can eventually lead to a form of dementia. Broken bones and bruises are no fun either. Wear a helmet while cycling, rollerblading, skiing, or doing any other activity that could risk head injuries.
Exercise Your Brain
The Einstein Aging Study, reported in the New England Journal of Medicine, concluded that participation in leisure activities led to a lower incidence of all types of dementia, including Alzheimer’s. For this study, leisure activities were reading, writing for pleasure, playing board or card games, playing musical instruments, and participating in group discussions. Subjects who participated in social activities one day each week had a 7% reduction in dementia risk. The risk was further reduced with increased social activity, to 63% for people who participated 11 times per week! The exclamation point is mine. You don’t often see exclamation points in scholarly writings, but I think this finding certainly rates one!!
The Einstein Study is part of a growing body of evidence that a brain workout will improve brain functioning in the same way that a physical workout will improve muscle and cardiovascular functioning. Memory loss, one of the best known and most feared signs of aging, can be reversed or at least slowed by playing a musical instrument, working crossword and Sudoku puzzles, playing chess, and otherwise using and “stretching” our brain.
The connection between mental calisthenics and reduced dementia is not proven, but there is a good amount of indirect and inferential evidence that this is indeed the case. For example, higher levels of education and more mentally demanding occupations correspond to lower levels of dementia.
Even if you did not go to college, or your occupation was not so demanding intellectually, don’t despair; it’s not the level of education or the occupation per se that is responsible for the brain health. You could have dropped out of high school and worked 45 years digging ditches, and spent all your free time at museums and reading and otherwise exercising your curiosity. Education is education. Brain stimulation is what we are after no matter what the guise. If this is you, you might be better off: Digging ditches is physical exercise, and that counts for a lot, too(see above).
And if you have not done those things that keep your brain sharp, start now. An industry is growing up around baby boomers fear of aging and the impending Alzheimer’s epidemic. Inspired by findings like those above, several companies, including Nintendo, are marketing devices designed to exercise our gray matter. But you do not need to spend a lot of money for gadgets or software. A book of puzzles, an interesting discussion, a thought provoking book, and interesting discussion about a thought provoking book; these things, too, benefit your brain.
And speaking of discussion, spending time with friends, staying socially connected, will help to improve your memory and keep the brain elastic and healthy. The connection between social interaction and lowered rates of Alzheimer’s disease and dementia has not yet been made conclusively. Certainty is a difficult thing in cases such as this, but that there is benefit in spending time with friends is irrefutable.
There is a common thread that runs through the suggestions and prescriptions above. All, or almost all, revert to lifestyles and practices that were more prevalent at some time in our past; they propound a simpler, more natural lifestyle. We are all exposed to increasing amounts of environmental contaminants and pollutants. Furthermore, our televisions and computers have taken the place of the after-dinner discussions, the quilting bees, the barn raisings…. In short, the activities that served to further our neighborhoods and society, those activities that also served as our entertainment, made us a much more social being. Many, if not most of those are gone. It is the price we pay for living in an industrial society; we pay, unfortunately, with our health.
The fact that the incidence of Alzheimer’s disease is increasing dramatically, as is the incidence of most other health problems, reinforces our position that a return to a simpler, more natural lifestyle is a very good thing. We cannot know, but I would bet there is a direct correlation between environmental stress and Alzheimer’s disease. A return to a simpler lifestyle is not an easy thing to do, but it is certainly a worthwhile thing to attempt.
In The News
[dropcap]A[/dropcap]longitudinal study reported in Neurology, in 2007 and known as The Rotterdam Study, followed almost 7000 people 55 years of age or older over a seven year period. The study shows a significant relationship between current smoking and Alzheimer’s disease and dementia when compared to “never smokers”.
There was also no association between past smoking and dementia, Alzheimer’s, or Vascular dementia (VaD). One more excellent reason to quit now!
Another longitudinal study conducted by a group in Seattle, Washington, watched a group of people over the age of 65 for a period of more than 9 years. They concluded that people who exercised three or more times a week reduced their risk of developing dementia more than those who exercised fewer than three times a week. Also according to this study, “Exercise seemed to be associated with the greatest risk reduction in participants who had poor physical functioning at baseline.” So it’s never too late to start. As long as you start now!
Some more good news! There seems to be a growing amount of evidence that something in red wine might delay or even prevent Alzheimer’s disease and other dementias. Jun Wang, et. al., reporting in The FASEB Journal (the journal of The Federation of American Societies for Experimental Biology) found that Cabernet Sauvignon both improve memory and cognitive performance in subjects with AD-type amyloid beta-protein (Aß) neuropathology (the plaques part of plaques and tangles). The same study also found that the wine also reduced plaques in the brains of the subjects.
Before we get too excited, the subjects in this particular study were mice. On the other hand, there is a significant amount of evidence in the scientific and anecdotal literature to support the conclusion that wine, particularly red wine, is, in fact, good in ways other than Alzheimer’s prevention. And studies involving mice often relate well to humans.
The authors of this experiment do not advocate excessive consumption of wine, nor do we. Over-consumption and alcoholism can cause dementia and a host of other health problems, as well. Recommended quantities always are in the range of one wine glass size glass per day for women, and two for men (sorry ladies), Another of the conclusions: other forms of alcoholic beverages do not seem to have the same healthy properties, so no substitutions, please.
Certain smells stir deep seated memories, and anything that has the power to channel reminiscences should be part of the daily life of all people with dementia
Anything touched and anything that touches us can be stimulating
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WHAT OTHERS ARE SAYING
- Thanks so much for the dignity with which you conduct your business. Susan
- Thanks, Appreciate that “extra effort”. Don’t seem to run into that much anymore… and that is a shame. I’m really looking forward to receiving the “toys” for my wife. I pray they will work as good as one of her caregivers told me they would. Ken