I am an Alzheimer's Caregiver

Dotty's Ten Communication Tips

2021-09-29T15:10:00.000-04:00

Once I get done giving you some advice from an actual person that lived with Alzheimer's, I am going to go eat.

What a person living with dementia would tell you if they could.

You know what makes me feel safe, secure, and happy? A smile.
Did you ever conside this? When you get tense and uptight it makes me feel tense and uptight.
Instead of getting all bent out of shape when I do something that seems perfectly normal to me, and perfectly nutty to you, why not just smile at me? It will take the edge off the situation all the way around.
Please try to understand and remember it is my short term memory, my right now memory, that is gone -- don't talk so fast, or use so many words.
You know what I am going to say if you go off into long winded explanations on why we should do something? I am going to say No, because I can never be certain if you are asking me to do something I like, or drink a bottle of castor oil. So I'll just say No to be safe.
Slow down. And don't sneak up on me and start talking. Did I tell you I like smiles?
Make sure you have my attention before you start blabbering away. What is going to happen if you start blabbering away and you don't have my attention, or confuse me? I am going to say No - count on it.
My attention span and ability to pay attention are not as good as they once were, please make eye contact with me before you start talking. A nice smile always gets my attention. Did I mention that before?
Sometimes you talk to me like I am a child or an idiot. How would you like it if I did that to you? Go to your room and think about this. Don't come back and tell me you are sorry, I won't know what you are talking about. Just stop doing it and we will get along very well, and probably better than you think.
You talk too much, instead try taking my hand and leading the way. I need a guide not a person to nag me all the time.

Watch Dotty on YouTube

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Is Alzheimer's Everywhere?

2017-04-08T13:05:00.001-04:00

My name is Bob DeMarco, I am an Alzheimer's caregiver. My mother Dorothy, now 93 years old, lives with Alzheimer's disease.

Is Alzheimer's everywhere?

I don't get out much these days. But, I make an effort to take my mother out every Friday night. We always go to a place where we can easily interact with people. This is part of the effort to keep my mother socialized and in the "world".

Last night, we went to Vic and Angelo's in downtown Delray Beach, Florida. A really fantastic venue. If you click on the image to the left, you'll hear a nice rendition of a song you might recognize.

By Bob DeMarco

Usually I stand and my mother sits. Since I always have a smile on my face, people find it easy to approach and talk with me.

Last night, I had a conversation with a woman and a man that were waiting to go inside (we were eating on the outside). Sure enough, the woman told me about her mother who was diagnosed with Alzheimer's at 58. She was a little surprised to see me, and my 93 year old out and about.

Now to my point. We went to Vic and Angelo's three out of the last four Friday's. And, every time I met someone that was related to a sufferer of Alzheimer's.

Alzheimer's seems to be everywhere.

Subscribe to the Alzheimer's Reading Room

100 Million Adults Touched by Alzheimer's

Examining the Impact of Alzheimer's Disease in America

More than half of Americans report that they have been touched by someone (living or deceased) who has Alzheimer's disease, and roughly a third of Americans are worried about getting Alzheimer's. The majority of Americans have a poor understanding of the fatal and progressive brain disease and the extent of its impact on individuals and society.

These are among the key findings of the HBO ALZHEIMER'S PROJECT/HARRIS INTERACTIVE CENSUS, a new survey that reveals the impact of Alzheimer's, what Americans think about the disease, and how it has affected them, their relatives and friends.

The survey found that:

54% of the U.S. population, or more than 100 million people, has been touched in some way by Alzheimer's.

More than half (52%) of those surveyed reported knowing someone living with the disease or someone who had it, but is now deceased.

Source HBO and Harris Interactive

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Alzheimer’s disease is a brain disorder that destroys short term memory and thinking skills.

Over time the disease robs the person living with dementia to perform simple tasks living dressing and bathing. These are tasks that we take for granted.

The following are 10 symptoms of Alzheimer's disease

Loss of short term memory
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Often show uncharacteristic behaviors that seem out of character
Lapses in judgement
Difficulty handling money and the checkbook
Disorientation in both familiar, and more often, in unfamiliar places
Sometime become withdrawn and often want to avoid social setting likes birthdays and holidays
Difficulty performing routine tasks, or become very slow at doing things like dressing themselves
Often become irritable, confused, and angry or mean when they become confused.

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Triggers That Make Alzheimers Worse

2015-03-22T20:15:00.000-04:00

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triggers that make alzheimers worse

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Bing Search - how to clean dementia teeth

2014-04-28T16:57:00.000-04:00

A reader searched Bing using these keywords,

how to clean dementia teeth.

The reader then selected this article from the Alzheimer's Reading Room.

Strategies to Promote Mouth Care in Persons with Dementia,

“C’mon, Mom, brush your teeth”

Trying to get your parent or spouse to cooperate with mouth care is a trial. Hearing the person you love tell you “no,” having him or her heap verbal garbage on you, or even push you away just hurts.

Bob DeMarco
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My husband asks the same the same question over and over again

2014-04-03T09:51:00.000-04:00

My primary advice in this type of situation is to feel empathy for your loved one who can’t remember the answer to what must be for him or her a critical question.

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Sundowning is a big problem for Alzheimer's caregivers

2014-03-27T13:09:00.000-04:00

The study helps explain "sundowning", an anxiety syndrome in dementia patients.

I found this research study interesting. I say this because I learned it is easier to deal with a problem and solve a problem if you first learn what is causing the problem. Understanding the cause of a problem provides a foundation on which a caregiver can build -- a necessary frame of reference.

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2014-03-21T13:13:00.000-04:00

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It took me a while to understand how my mother might be feeling when I went out and left her alone at home.

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AOL Keyword Search - dementia patient mean

2014-03-20T15:56:00.001-04:00

How can you get a person living with dementia to stop saying mean and hurtful things to you?

It is not unusual for Alzheimer's dementia caregivers to search for information on meanness.

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When Dementia Patients Say Mean Things, What Can You Do?

Types of Dementia

2014-03-18T14:41:00.001-04:00

Dementia is a an illness that usually occurs slowly over time, and usually includes a progressive state of deterioration.

The earliest signs of dementia are usually memory problems, confusion, and changes in the way a person behaves and communicates.

Cognitive symptoms of dementia can include poor problem solving, difficulty learning new skills, and impaired decision making. Behavior changes can include fear, insecurity, anger, and often, depression like symptoms.

Dementia is caused by various diseases and conditions that result in damaged brain cells. Brain cells can be destroyed by brain diseases, such as Alzheimer’s disease, or strokes (called vascular or multi-infarct dementia), which decrease blood flow to the brain.

Alzheimer's disease is the most common cause of dementia.

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Families Learn Alzheimer's May Not Be Alzheimer's Instead It's

2014-03-18T09:20:00.000-04:00

Many will discover it’s not Alzheimer’s or Parkinson’s disease at all that impairs function, instead its Lewy body dementia (LBD), the second most common form of progressive dementia after Alzheimer’s disease.

Families Learn Alzheimer’s-Like Symptoms May Not Be Alzheimer’s

The most misdiagnosed dementia, LBD affects 1.3 million Americans.

“Early and accurate diagnosis is critical,” says Angela Taylor, director of programs, Lewy Body Dementia Association. “In fact, it may be life-saving.” Taylor warns, “Unlike Alzheimer’s disease, people with undiagnosed LBD may be exposed to medications that can be very harmful to them. Misdiagnosis or lack of diagnosis also delays comprehensive symptom management that could improve their quality of life.”

Taylor adds,

“We’re helping healthcare practitioners and LBD families with information and resources. We collaborated with the National Institutes of Health (NIH) on a new, comprehensive downloadable booklet, which includes a series of ‘Caregiver Sketches’ that highlight the experiences of others to unveil the shroud around LBD. It helps people to compare notes, and it encourages them to seek help… and that’s why we’re here.”

Caregiver Sketches of LBD

Not-so-sweet dreams

In his mid-sixties, Bruce started having some mild confusion and vivid dreams that he physically acted out by thrashing around and even falling out of bed. His neurologist diagnosed REM sleep behavior disorder and mild cognitive changes. Two years later, Bruce’s confusion had progressed to dementia. He was no longer able to live alone in his own home. His neurologist referred him for neuropsychological testing and, based on the results, changed his diagnosis to dementia with Lewy bodies.

What’s going on?

Janet, a 60-year old executive secretary, began having trouble managing the account, paperwork, and other responsibilities of her job. She became increasingly irritable, and her daughter insisted she see a doctor. Janet was diagnosed with depression and stress-related problems. Her doctor prescribed an antidepressant, but her thinking and concentration problems worsened. When she could no longer function at work, her doctor diagnosed Alzheimer’s disease. A few months later, Janet developed a tremor in her right hand. She was referred to a neurologist, who finally diagnosed Lewy body dementia.

Trouble with balance

After major surgery at age 69, Cliff developed balance problems, and later his movements became stiff. Within a year, Cliff started having hallucinations and troubling side effects from antipsychotic medications. After an initial diagnosis of parkinsonism, he soon developed cognitive problems and was diagnosed with Lewy body dementia. Cliff’s balance problems increased, and many falls prompted physical and occupational therapy, where he learned to use adaptive devices and techniques. Cliff’s wife, Kathy, discovered that putting his shoes on before getting him up helped improve his balance. The doctor prescribed a low dose of medication for parkinsonism, which also helped.

Sleep and dementia
Lee started having bad nightmares in his late sixties. Later, he had problems communicating and would sit for long periods of time staring out the window. His sleep problems worsened and, by age 73, were one of the most difficult symptoms of LBD. While asleep, Lee talked and his limbs jerked—he thought his dreams were real. Upon waking, he thought he had been at work or out with friends. Medications prescribed for dementia and sleep issues helped both Lee and his wife get more rest.

Understanding LBD

LBD is associated with abnormal protein deposits in the brain, called Lewy bodies, and affects thinking, movement, behavior and mood. It’s difficult to diagnose LBD, because its early symptoms resemble symptoms found in Alzheimer’s and Parkinson’s disease. Lewy body dementia, a complex but surprisingly common brain disease, refers to two related diagnoses: Parkinson’s disease dementia (PDD) and dementia with Lewy bodies (DLB). The difference is in the presentation of two symptoms based on the “one-year rule.” With DLB, cognitive symptoms that interfere with daily living appear before or within a year of symptoms resembling Parkinson’s. With PDD, dementia does not develop until at least a year after movement problems begin.

The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of Lewy body dementias (LBD), supporting people with LBD, their families and caregivers, and promoting scientific advances.

LBD, a complex disease that can present with a range of physical, cognitive, and behavioral symptoms, is a “family disease.” It dramatically affects not only the person diagnosed but also the primary caregiver. Through outreach, education and research, LBDA supports all those affected by Lewy body dementias. To learn more about LBD and LBDA, please visit lbda.org.

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How to Express Sympathy to a Friend Grieving the Death of a Loved One

2014-03-11T12:31:00.000-04:00

How can you comfort someone grieving the death of a loved one? What can you say that might adequately offer solace? "I'm sorry" doesn't seem to cut it.

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Alzheimer's Quote, She Said, He Said

2014-03-05T14:37:00.004-05:00

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Simple word games dementia

2014-03-03T12:33:00.004-05:00

Activities as simple as structured discussion groups and word games can benefit memory and thinking for people with Alzheimer’s or dementia.

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Activities for Dementia Patients

2014-02-24T14:45:00.000-05:00

A search of Google using these keywords

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More than half of Alzheimer's and dementia patients had inadequate meaningful daily activities at a senior center or at home.

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I believe activities are crucial to well-being. In the past ten years, research has shown that activities play a large part in preventing the progression of dementia. We also know that socializing prevents loneliness, despair and suicidal thoughts.

Socialization and Alzheimers Disease

2014-02-19T09:01:00.000-05:00

The following keyword search on Google

socialization and alzheimers disease

lead the reader to this article.

Dotty and I would begin living our life as we always had.

I actually wrote those words on my da Vinci pad with about 50 circles around the words.

Then I went about the task of writing down the kinds of things we use to do, and the kinds of activities that Dotty enjoyed. I actually had to remind myself and make a list.

The first idea failed miserably. I started taking Dotty out to dinner at nice restaurants. It didn't work.

Imagine me trying to talk about the quality of the food, or any of the kinds of things you discuss over a nice night out. Dotty often sat there without saying a word.

In addition, she looked like she had been dipped in something that smelled bad. Me. I didn't enjoy the outing and I ended up with a sore stomach and full of angst and stress.

Soon I came up with a better idea. Sit outside at a bar where you could also order food. I already wrote about the good and the bad previously. And, about how I discovered what worked for us.

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Google Search - Short Term Memory Problems

2014-02-18T13:42:00.000-05:00

One of the first signs of dementia is short term memory loss. Alzheimer's is the most common form of dementia; and, a cause of short term memory problems.

One night I was having an interesting conversation at the dinner table with my mother. She had just finished eating a small steak, mashed potatoes, and broccoli. The conversation turned to south Philadelphia the place where my mother was born (1916) and raised.

I asked her, where did you go to first grade? She answered without hesitation, Saint Monica's. My mother attended Saint Monica's in the 1920s.

Later in the conversation, and with her dinner plate sitting directly in front of her, my mother asked, are we going to eat today? She had forgotten that she just ate.

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Frigid weather can pose special risks to older adults

2014-02-13T17:41:00.000-05:00

The National Institute on Aging (NIA), part of the National Institutes of Health, has some advice for helping older people avoid hypothermia—when the body gets too cold—during cold weather.

Hypothermia is generally defined as having a core body temperature of 95 degrees Fahrenheit or lower and can occur when the outside environment gets too cold or the body's heat production decreases.

Older adults are especially vulnerable to hypothermia because their bodies’ response to cold can be diminished by underlying medical conditions such as diabetes and by use of some medicines, including over-the-counter cold remedies.

Hypothermia can develop in older adults after relatively short exposure to cold weather or even a small drop in temperature.

Someone may suffer from hypothermia if he or she has been exposed to cool temperatures and shows one or more of the following signs: slowed or slurred speech; sleepiness or confusion; shivering or stiffness in the arms and legs; poor control over body movements; slow reactions, or a weak pulse.

Here are a few tips to help older people avoid hypothermia:

Make sure your home is warm enough. Set the thermostat to at least 68 to 70 degrees. Even mildly cool homes with temperatures from 60 to 65 degrees can lead to hypothermia in older people.
To stay warm at home, wear long underwear under your clothes, along with socks and slippers. Use a blanket or afghan to keep your legs and shoulders warm and wear a hat or cap indoors.
When going outside in the cold, it is important to wear a hat, scarf, and gloves or mittens to prevent loss of body heat through your head and hands. A hat is particularly important because a large portion of body heat can be lost through the head. Wear several layers of warm loose clothing to help trap warm air between the layers.
Check with your doctor to see if any prescription or over-the-counter medications you are taking may increase your risk for hypothermia.

Bob DeMarco Alzheimer's Reading Room +Dementia Reading Room

To learn more about Alzheimer's and Dementia care visit the Alzheimer's Reading Room

My Big Mistake, and the Spaghetti Sauce

2014-02-10T10:13:00.000-05:00

#Alzheimer's Survival, My Big Mistake, and the Spaghetti Sauce http://t.co/JcBL0EeZZw #health #dementiacare pic.twitter.com/kt6gE5Z7g7 — AlzheimersRead (@ALZHEIMERSread) February 10, 2014

+Bob DeMarco +Dementia Reading Room +AlzheimersReadingRoom

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Leaving Alzheimer's Alone at Home

2014-02-07T11:47:00.000-05:00

It took me a while to understand how my mother might be feeling when I went out and left her alone at home.

Persons living with Alzheimer's or a related dementia often become mean or agitated when left alone even for a very small amount of time.

A reader searched Google using these keywords

leaving altzhmers alone at home

Can you leave a person living with Alzheimer's alone?

The following article is suggested reading.

You might also consider sharing this via social media and in the Alzheimer's community on message boards.

You Can't Leave a Person with Alzheimer's Alone

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Dementia Patient Won't Go to Social Daycare

2014-02-05T13:42:00.000-05:00

How do you get a person living with Dementia to go to adult day care?

One of our readers wrote:

Oh how I wish she would go! She calls it "Granny Day Care" and refuses to go.

I wanted her to go over a year ago. I told her recently that she would have made some new friends by now but she wants no part of it. I think they could accommodate the visual impairment there as well as the cognitive impairment.

She doesn't see herself as an older person, but she's 87!

Shaking my head....

From Christopher Nadeau, Executive Director, New York Memory Center

This is common and a number of strategies include:

getting a written letter from the primary care physician requesting such care,

actually telling your loved one you must go in order to stay physically, cognitively and socially fit,

asking your loved one to try it out for a week to see how they feel.

In some instances we recommend a straight forward conversation with the person letting them know that the only other alternative is a nursing home or assisted living facility.

Day centers, like home care, are not a fit for every older adult, but for many seniors, especially those that are isolated at home with no socialization, it is a lifeline to remaining vibrant in the community.

To learn more about Alzheimer's and Dementia care visit the Alzheimer's Reading Room

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Agitation in Elderly Dementia Patients

2014-01-21T14:39:00.003-05:00

Research provides the best evidence to date that the late-day anxiety and agitation sometimes seen in older institutionalized adults, especially those with dementia, has a biological basis in the brain.

“It’s a big problem for caregivers. Patients can get aggressive and very disruptive,” said Tracy Bedrosian, lead author of the study and a doctoral student in neuroscience at Ohio State University.

A reader recently came to the Alzheimer's Reading Room after searching Bing using these keywords,

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