4/22/15      Tips for “Simpler” Communication For People With Alzheimer’s

KISS – an acronym for “Keep it simple, stupid” – was used as a design concept by the US Navy in 1960. The KISS principle states that most systems work best if they are kept simple rather than made complicated, therefore unnecessary detail should be avoided.

And how might this concept apply to your loved one with dementia?

The “It” in KISS is communication. Keep “Language” Simple, Stupid.

Humans are the only species that uses meaningful, reciprocal communication. Dolphin sonar and chimp signing are impressive, but they don’t count. And a ritualized exchange like a mutual greeting – “Hi. How are you? I’m fine” – is not genuine language. It’s a conditioned habit.

Language is a phenomenally complex skill. The interplay of Hearing what is said, Processing the message, Formulating a response and Executing it literally occurs in nanoseconds.

As Alzheimer’s is a real neurological disease – and other dementias may be caused by neurological problems such as a brain injury – communication along with everything else is compromised with advancement of the disease.

Blah! Blah! Blah! Too Many Words

Women speak about 20,000 words a day, 7,000 for men. That’s a lot of words! And Americans engaged in conversation at a rate of 110–150 wpm. That’s a lot of words per minute!

Imagine:         Listening to someone for 1 minute.

Processing approximately 150 words.

Formulating a reply.

Responding appropriately AND

Repeating those steps with brain damage!

No wonder people with Alzheimer’s don’t answer questions promptly, are slow to follow directions or not at all, fumble with word finding and misuse, etc. Neurologically, they can’t.

Caregivers and family of the individual with Alzheimer’s, need to simplify their communication and supplement with relevant gestures.

KISS Communication Tips:

  • Use simple, clear words and less of them.
  • Look at the individual.
  • Speak slowly, not disrespectfully. No baby-talk.
  • Give the person time to reply to one question or direction before giving them another.
  • Don’t use slang.
  • Don’t interrupt.
  • Add meaningful gestures. Ie. If you want the person to accompany you, extend and open hand.

And be cognizant that people with dementia may:

  • Need extra time to process when you said.
  • Miss voice intonations
  • Substitute words
  • Say something completely unrelated to the topic
  • Not say anything
  • Respond non-verbally: Point. Groan. Smile. Cry, etc.

From I Will Never Forget:

Angie spoke (to her grandmother) very deliberately and in short sentences. Her voice was strong, and her words were well enunciated. Mom would have been proud of her granddaughter for her thoughtful prosody. I know I was and admired the effort Angie put in to maximize her grandmother’s comprehension.

Adults naturally talk to young children in simple sentences because we realize their ability to understand complex language is evolving. Similarly, but for very different reasons, people with dementia aren’t able to process lengthy, detailed sentences either.

Caregivers are Smart enough to Keep It Simple!

“Help Me Help Others. Buy a Book!” I donate from each book sold to help support Alzheimer’s research.


2/16/2015     Why I Got Tested for Alzheimer’s; Why You Might Not

My mother died from Alzheimer’s in July 2011. The death toll, which is already too high, is projected to rise with no real treatments or cure currently available.

Anyone who follows what’s trending in Alzheimer’s research probably has read countless articles toting the latest findings, links to certain foods, environmental factors and of course genetics.

Although research continues to make headway, until there’s a proven cause and cure, it’s a scientific work in progress. In my professional opinion, as an Occupational Therapist with a concentration in neurology, I question the role that one Alzheimer’s gene can play. There are too many other complex and overlapping variables.

Mysterious Aunt Elizabeth

As my mother’s Alzheimer’s advanced, she told one day that she had an Aunt Elizabeth who had Alzheimer’s too. Genealogy confirms that Aunt Elizabeth was real and not just a figment of my mother’s dementia tainted imagination.

Great Aunt Elizabeth may have had dementia and possibly even Alzheimer’s, a term along with senility that was used indiscriminatingly years ago.

From I Will Never Forget, CHAPTER 28, The Ugly Truth   Mom admitted, “I know I’m having a lot of difficulty remembering things, Elaine. It’s terrible knowing you’re not with it sometimes. I hope that if this is genetic, your brothers David or Jerry inherited this gene and not you.”

Is It Really in the Genes?

At my presentations and book signings I’m often asked if Alzheimer’s is genetic. I defer responding if there is a representative from the Alzheimer’s Association or geriatric specialist in the audience. But they consistently site “genetics as the greatest single link over other specific factors.”

Couched neatly under the veil of innuendo, that answer raises a lot of questions for me. Years from now – hopefully not decades – when researchers pin point what really causes Alzheimer’s, I’m convinced genetics will play a role just like one’s family history does in every medical condition, but it will not be the “scientific smoking gun.”

A quote on a picture frame, of all things, reflects my views: “Siblings are different flowers from the same garden.” “Different” is the operative word as siblings do NOT have identical genes.

Genes and Genetic Expression

Despite all of this conflicting information, I voluntarily underwent genetic testing a year after my mom’s death, primarily out of curiosity. I was not surprised given my family history, that I have 15% chance of having Alzheimer’s vs 7% for the general population. I also did the testing for a future baseline as more sophisticated and/or more genetic markers are discovered.

It’s critically important to understand this fact about genetics: Having the gene and having the gene express itself are not the same. An excellent, albeit tragic, example of genetic expression is Huntington’s Chorea.

“Huntington’s disease is caused by a changed or mutated, gene. If you have a parent with the disease, you have a 50% chance of getting the changed gene and the disease.”

Translation? If you have the altered gene, you will have Huntington’s Disease.

Too Many Variables

“Few researchers think that the search for Alzheimer’s genes is over. Most investigators are convinced that there are many more genes involved in Alzheimer’s disease and, moreover, that other conditions must also be present for the disease to develop.”

This pretty much says it all. We just don’t know enough yet to make absolute statements. In my opinion, don’t waist your money on genetic testing for Alzheimer’s unless you’re also curious. And then don’t over think the results if they are unfavorable, or break open the champagne if you’re deemed to be genetically free of Alzheimer’s.

Live by Dr. Tanzi’s statement: “What’s good for the heart is good for the brain.” Eat healthy, stay active, be socially engaged, keep your priorities straight and enjoy life!

My mother followed all of these and died from Alzheimer’s anyway, but…

Mom “knew her memory was weakening…She walked and walked so she could strengthen her mind because there was a history of Alzheimer’s in her family and she wanted to beat it.”

There was no way to know for sure, but I wanted to believe that perhaps her generally good physical health reinforced through her daily treks about the Village complex and the Woods, her lifelong success with weight management, and her bright, positive attitude had at least stalled the ravages of Dementia.”  From I Will Never Forget, CHAPTER 28, The Ugly Truth

 Elaine C. Pereira is the author of I Will Never Forget, Award-Winning, Best Selling memoir.  She donates from each book sold to help support Alzheimer’s research.


1/13/2015     Why I Got Tested for Alzheimer’s

Since there are few preventive treatments, some argue it’s best not to know your risk for Alzheimer’s disease. Here, one woman explains why she took the test.

Scientists are very close to creating a blood test that will be able to detect Alzheimer’s disease a decade before diagnosis, according to a report in The FASEB Journal. But with few preventive treatments available, would you want to know? Here’s why one woman said yes.

My mother died of Alzheimer’s disease in 2011, when she was just a couple weeks shy of 87. She had once told me she had an aunt who also died of Alzheimer’s, and while I can’t say for sure if that’s true (I never met this aunt, and back then, a clear diagnosis was harder to get than it is today), knowing I had this family history motivated me to get more information. (Is Alzheimer’s a Normal Part of Aging?)

I used 23andme [an at-home salivary genetic screening service that has since been banned by the FDA pending further testing], which assesses, among other things, Alzheimer’s risk. When I went to check my results online, the site asked, “Are you sure you want to go to this page?” When I clicked yes it said, like, “Are you absolutely positive?” So there were several different chances to decide, “Maybe I don’t want to know this.” I just kept clicking yes; I was nervous, but I knew I wanted to know my risk.

23andme told me that I have a 15 percent probability of getting Alzheimer’s compared to the average person’s risk, which is 7 percent. So my understanding is that my risk is roughly twice as high. I tried to take this just as information—nothing more.

I went into it knowing there would be a pretty good probability that my risk factors would be higher than average, so I was somewhat prepared mentally. I was not surprised, and I didn’t fall apart. Honestly, I was mostly relieved that it didn’t say my risk was 70 percent.

After finding out my risk from 23andme, I talked to my internist about my results. He gave me a really significant piece of information: Just because you have a genetic risk, it’s not a given that you’ll get the disease. It’s not like [the neurodegenerative genetic disease] Huntington’s, where if you have the gene and you live to be 40, you’re 99 percent sure to get it. With Alzheimer’s, we just don’t know. (Make sure to read how a Groundbreaking New Study Sheds Light on the Mysterious Brain.)

I haven’t done anything about my results, in terms of lifestyle changes. To be honest, I’m not aware that there’s a lot we can do yet. My mother walked a lot, was very active, was socially engaged—all these things experts say are so good for your brain—and she got Alzheimer’s anyway.

My mom became less functional somewhere around age 83. But that means she had more than 80 really wonderful years. Had she been overweight, less socially engaged, or eaten a poorer diet, maybe that gene would have kicked in at age 70, who knows? So at this stage, the general recommendation is to do the best you can to stave off the possibility of developing the disease. The exceptions, of course, are those at risk for early-onset Alzheimer’s disease. [This variation, which strikes people younger than age 65, has a definitive genetic link.]

I understand the people who say that they’d rather not know. But I had two things in mind: I wanted to know what else might be present in my parents’ ancestry in addition to Alzheimer’s, as I don’t have much information about my grandparents’ medical history. And 5 or 10 years from now, if we know more about what gene to look for or what markers to look for, I have a comparison. I have a baseline. (Find out the best Foods to Prevent Alzheimer’s.)

I know that these results are just a factor of my risk profile. I don’t stress about my results, because I know that genetic testing is just one piece of a bigger picture. I do my part—staying active, engaging socially, eating decently—and the rest is out of my hands.

But I’m still glad it didn’t say 70 percent.

After her mother passed away, Elaine wrote a book about her mother’s experience with the disease and her own experience as caretaker. Help Elaine help others by buying it; a portion of proceeds go to Alzheimer’s research.


Best Christmas Present Ever!  

For My Mom with Alzheimer’s

Only with the clarity of vision that 20/20 hindsight affords, can I “see” that my mother had memory problems and uncharacteristic behaviors, later diagnosed as Alzheimer’s, seven years before her passing.

It was 2004, Mom’s personal year from hell, her second actually. The first was in 1951 when her twenty-month-old son was killed in a tragic car accident. Mom had buried her husband of 58 years (my dad) in April 2004 and on December 30, 2004 her remaining son, my older brother Jerry, passed away from cancer.

My husband and I were at Jerry’s side, his hand caressed between both of mine, when he took his last breath. Ugh! I dreaded notifying my mother. Actually I had pre-arranged with my mother’s best friend Shirley that I would call her when the time came and she in turn would tell my mom in person.

Dementia Disguised as Grief

When Shirley and I spoke again a few days later, she descried my mother’s emotional demeanor as flat! I remember scrunching my face at Shirley’s description; how could a mother have a “flat” affect upon learning her son had died?

At the time, I attributed Mom’s disconnection to protective shock, when in fact it was the beginning of her dementia. Mom had teared up about David for decades after his death, but to Dad’s and Jerry’s passing she had been reserved.

I know now Mom was not processing the losses.                                                                I know now Mom was emotionally detached.                                                                       I know now that Mom had Alzheimer’s.

Just before Christmas, 2004, Jerry conceded defeat. Cancer’s invading marauder cells had finally won despite his valiant efforts to fight back undergoing months of brutal chemo!

Mom and I lived two hours apart in Michigan while Jerry was in hospice in Georgia. Somehow, someway, I had to get my mother to Atlanta to see her son before his window of lucidity closed forever.

My thoughtful daughter’s passing remark about flying to Atlanta on Christmas Day launched the perfect plan. Normally I’m a control freak, but strangely on that Christmas Day 2004, there were so many overwhelming variables, I literally just “let go.”

Despite Dementia, Mom Loved Her Present!

First I needed the outbound flight to leave on time.

From I Will Never Forget, Chapter 24 – Angel Antics:                                                          “I didn’t care if our return flight was diverted to the North Pole, but it was crucial that my mom could see her dying son one last time.”

Only a serendipitous gate change delayed the fight 30 minutes.

Second, I needed a compassionate cab driver.

“The next cab in line was a minivan, and the driver was Pakistani or Indian, perhaps. I handed him a prepared card with the name of the hospice facility and address.”

He never said a word, but clearly he overheard his lady passengers discussing the nature of their visit and the name of an end-of-life hospice facility would have spoken volumes. When we arrived he gave me his cell phone number.

“Call me when you’re ready to leave, and I’ll come back.”

Then I prayed Jerry would actually be able to engage with Mom.

“Jerry was alert, funny, lucid, sitting up in bed, and chatty…His eyes were bright and clear.”

Mom did great! Jerry did great! And I was so relieved. Eventually we said our goodbyes and bear hugged Jerry.

“It had been the best, most wonderful Christmas present Jerry and I had ever given our mom!”

Joining Her Boys

My mother didn’t talk about Jerry’s passing very often, nor did she cry much. At the time I was grateful she didn’t collapse into a puddle of tears as I would have done the same but I was oblivious to the reason. Mom’s very essence was steadily slipping away from Alzheimer’s.

My mother died in July 2011. She “joined her boys, David, Wayne and Jerry” leaving me an orphan but I’m okay knowing she doesn’t suffer from Alzheimer’s any longer.

“Help Me Help Others. Buy a Book!”

I donate from sales of I Will Never Forget to support Alzheimer’s research.



Hosting the Holidays?

5 Tips to Help Someone with Dementia Enjoy the Event Too

So you drew the short straw and everyone’s coming to your house this holiday season. Including all the siblings, cousins, grand-people and kids, you’ll have a house full of guests.

To be the “hostess with the most-ess,” as my mom use to say, if someone with memory issues will be there, the following recommendations are very important.

What should be a wonderful, festive, family event over an abundance of food, timeless traditions and reminiscing, can implode in seconds without careful planning. It’s not running out of mashed potatoes that will define the holiday as a success or a failure, but your loved one with dementia – agitated, confused and overwhelmed – that may.

Whether it’s your parent, uncle Joe or the usually sweet but addled neighbor lady next door, please consider these tips.

  1. Inform your guests. Sharing information with others that someone has confusion, memory issues and perhaps irritability is not disrespectful. It is out of genuine concern that you make your guests aware in advance as to what to expect from that person.   Honest and thoughtful transparency is essential.
  1. Minimize the chaos. Most likely your holiday gathering will be bustling with activity.

If possible designate an area, ideally a separate room, where the more boisterous guests can gather – a finished basement is perfect but not an option for everyone – or conversely a quiet room for the person with dementia and at least one other person to engage with. They should not be sequestered alone.

From I Will Never Forget:

Mom couldn’t process what the recipe instructions were telling her to do. I had not observed this disconnection before. I quietly got out the cauliflower and helped her get started.

“If you cut the cauliflower into pieces Mom, I’ll start with the mushrooms.” Immediately I detected a sense of relief from her as if she had been rescued from the strangle hold of confusion.

 She smiled and said, “Okay.”

While my mother hung out in the kitchen with me, everyone else gathered in the living room, by my design. One at a time, they stepped into the kitchen to acknowledge her.

  1. Control the Time: Holidays are often an open-house format. They may revolve around a central time, like dinner on Thanksgiving, but some guests may arrive early and others stay late.

Unless they live with you, the person with dementia will probably do better if their visit is limited and not trapped there all day. This may require a designated driver to chauffeur them.

From I Will Never Forget:

After Christmas morning, my husband Joe headed out to get my mom.

When they returned Mom’s face lit up brightly when she saw her granddaughter Christie. Mom’s blue eyes still sparkled, and her smile exuded warmth and comfort.

I was concerned again about Mom transitioning back to her place, but she was exhausted. She smiled as I kissed her good night, and I said, “I’m glad you were with us for Christmas.”   “I’m glad too …”

If they do live with you, be observant to the cues that your loved one is fading and ready for the couch or their bedroom.

  1. Let them help. Although Mom’s ability to read and process a recipe was long gone, she could do one job at a time: cut cauliflower or peel potatoes. It required a little thoughtful planning to keep her productively busy, not overwhelmed nor demeaned, but she was engaged and in the kitchen with me.

If the kitchen isn’t the best place for your confused guest, then arrange some activities for them to do elsewhere like fold napkins or sort silverware.

  1. Include them specifically. Your loved one with dementia will not be able to initiate self-soothing or self-engaging activities. Plan ahead to have a sing-a-long or drag out photo albums for them to peruse through. Have some conversation starters ready especially for someone else to initiate: “Mom, tell your niece about that train ride across the country you took in your 20s.” “Uncle Joe, tell me about that red convertible you drove in high school.” “Mrs. Davis, how did you meet Mr. Davis?”

 From I Will Never Forget:

“Mom beamed when I asked her about her mom, my grandma Lillian Oberle.”

There’s no one size fits all approach to helping someone with memory issues be comfortable and calm through the crazy bustle of holiday events. It’s crucial first to admit they need special attention and plan ahead to keep the environment appropriate, whatever that means to them.

Everyone deserves to have a nice holiday but it’s on us to accommodate those who are struggling with dementia!



 Be Thankful at Thanksgiving No Matter What!

Thanksgiving is my husband’s favorite holiday, not just because of the endless feast, but because it celebrates family and not commercialism. Being together is the hallmark of Thanksgiving.

Sadly many people struggle during the extended holiday season just trying to survive emotionally due to devastating personal loss. Like them, I also have experienced the difficult heartache of losing someone too young. In my case it was my sister-in-law who died suddenly followed three years later by my brother; both were in their mid fifties.

Three Phone Calls – Three Lives Changed Forever

On July 8, 2011 my phone rang early in the morning to alert me that my amazing mom, who I am so thankful to have been raised by, was fading quickly from Alzheimer’s Disease. No matter how “expected” it was, seeing my mom after her last breath and squeezing her still hands are indelible memories.

But July 8th brought another, genuinely catastrophic event. Via a different phone call we learned that a wonderful young friend of ours, Amy then 38 years old was missing! She disappeared in Golden, CO; her vehicle found abandoned near a popular hiking area along the Colorado River.

Authorities initially ruled out foul play and suspected she had slipped into the river’s raging waters. For months, endless resources and searches yielded nothing but more questions. As Thanksgiving 2011 approached, I reflected on Amy’s family. I couldn’t fathom their pain nor what they could possibly feel thankful for.

In October a third phone call launched yet another avalanche of tragedy. With just a skeleton of words our neighbor told me that his stepson (late twenties) had been killed in a horrific train accident. Martin (not his real name) had committed suicide by walking onto the tracks and abruptly stopping as the train plowed into him!

Immediately my thoughts raced from Martin’s mother to my mom when I learned of Martin’s death. My own mother had buried both of her sons. Decades ago, when my brother David was a toddler, he was killed in a devastating car accident. As with Amy and Martin’s families, in a split second, my parent’s world completely imploded!

Early Signs of Alzheimer’s Disguised as Grief!

Decades later in 2004 Mom’s husband of 58 years (my dad) passed away followed by my older brother Jerry’s death from cancer in December! As the only surviving “child” I stepped up in mom’s behalf ready to pick up the emotional pieces of her horrific year.

But unlike Amy or Martin’s parents, my mother’s response to Jerry’s death was surprisingly flat and virtually without emotion. Although I appreciated not seeing my mom disintegrate in a puddle of inconsolable tears, I missed the bigger picture.

Cleverly obscured by genuine grief, faint whispers of Mom’s Alzheimer’s were already smoldering in the crevices of her mind. Steadily they grew, invaded her persona, clouded her judgment and destroyed the very essence that defined her.

Giving Thanks Any Way You Can

Thanksgiving is here again. It will be especially difficult for Martin’s family to feel “thankful” as their loss is so unfathomable.

This Thanksgiving also brings a sad but not unexpected conclusion to Amy’s whereabouts. Last winter her remains surfaced in Colorado finally bringing closure to a family that had been paralyzed by uncertainty for nearly three years.

Ironically I mourn less for my mother because she is reunited with her sons and husband in heaven. I celebrate that this Thanksgiving.

There is always someone who has more. There is always someone who has less.

There is always someone especially blessed when we are experiencing a personal living hell. And there is always someone who, privately, we are grateful not to be!

Wherever you are on the Continuum of Thankfulness, struggling to “just get through the day” or genuinely appreciative that your life is blessed, embrace those who are coping with insurmountable difficulties! Chances are others embraced you in your darkest days too.



Do Brain Games Really Help Prevent Dementia? 

Stanford says “No” but they are cool and can’t hurt! Research is always evolving

The explosion of individuals with dementia brain draining disorders like Alzheimer’s has created a plethora of resources targeting improving one’s mind. The implied supposition of course, is that challenging your brain through visual, spatial and related problem-solving exercises will stall or maybe even arrest dementia. But do they?

Like far too many people, I know first hand the ravages of Alzheimer’s. My mother died of the disease in 2011 and she often referred to her “Aunt Elizabeth” has having succumb to “senility, but probably Alzheimer’s”.   I never met my great aunt Elizabeth but clearly AD “runs in the family.”

Given my gene pool is probably tainted with documented cases of Alzheimer’s, I’m out to explore every reasonable approach to fighting back! So I thought I’d check a few out “brain games.” My experiences are just that, my personal experience with no research validity. But as an Occupational Therapist with a strong neurological background, I’m qualified to at least render a professional opinion.

Enter Brain Games!

Literally in less than a second, .08 in fact, Google’s search engines revealed hundreds of brain game sites. Three include:

Games for the Brain:   “Play neverending quiz, memory & brain games to train your thinking.”

Luminosity: “Challenge your brain with games designed by neuroscientists to exercise memory and attention.”

And AARP “Have fun working your memory, problem-solving and language skills.”

Collectively all of the sites offer a variety of visual spatial, visual motor exercises and memory recall. It’s the fine motor mouse or track pad control that intrigued me as many very lucid people are “all thumbs” when it comes to keyboard control. I question that some of the exercise train the memory part of the brain or rather speed and dexterity.

Coincidently while I was playing free brain games on AARP’s site, up popped this article from October 20, 2014:

Scientific Evidence Does Not Support the Brain Game Claims, Stanford Scholars Say

“While it is true that the human mind is malleable throughout a lifetime, improvement on a single task – like playing computer-based brain games – does not imply a general, all-around and deeper improvement in cognition beyond performing better on just a particular game.”

So Now What?

Honestly, I’m disappointed as like virtually everyone else I’m searching for the dementia equivalent of the Leprechaun’s pot of gold at the of the rainbow. But in my efforts to “Just Say No to Alzheimer’s”, some of the brain game activities are humbly cool and fun to try.

Exploring the free Brain Game sites costs you nothing except some time and probably some “humble pie” as you falter, out witted by some multi-faceted, figure ground, puzzle thing!

In my professional opinion, though, research is ever changing. Even though the Stanford scholars concluded that Brain Games do not generate “a general, all-around and deeper improvement in cognition”, there is still so much do not know about the specifics of Alzheimer’s and its effects on the brain. Research has a long, long way to go.


September 11, 2014     

Three Important Facts About Alzheimer’s Everyone Should Know

Increasing funding for Alzheimer’s research is crucial! Also crucial is having an accurate understanding of the facts about Alzheimer’s. No disrespect to the already well informed, but the general public needs a better knowledge base to recognize the subtle, often excused-away symptoms of dementia issues.

It’s on us who are more enlightened to educate those who are not, and dispel the myths of the misinformed.

Just as breast cancer supporters have worked tirelessly to advance research funding with their Pink ribbon campaign, Alzheimer’s awareness advocates need to make Purple the new Pink!

Maybe these basic facts will help others. Please pass them on.

  1. Alzheimer’s is a real neurological disease.     Even people with only a minimal understanding of medical issues grasp the basics of major diseases like cancer, diabetes or heart problems. In fact my son-in-law’s high school juniors know that when a stroke occurs on one side of the brain, it affects the opposite side of the body. That said however, most people don’t have an adequate understanding of Alzheimer’s or dementia.

Alzheimer’s is a real, fatal, progressive disease with no treatments. It is not just a quirky personality change.

Because of how the disease affects the individual’s brain, their personality is affected usually causing adverse changes. Hostility, paranoia, suspicion are frequent first indications in otherwise kind individuals.

I’m an occupational therapist and talked frequently with my husband about my mother’s deterioration from Alzheimer’s. I was stunned, an understatement really, to find out last year that he did not know that Alzheimer’s “caused real brain changes.”

During a television spot on Alzheimer’s, my husband and I saw two brain scan images placed side by side. One showed a normal adult brain and the other the brain of someone with Alzheimer’s. The contrast was striking. It was unmistakable comparing the shriveled, mottled, darkened brain of the person affected by Alzheimer’s disease.

I could hardly believe that having lived with me every step of every arduous day of my mother’s journey through dementia that he still didn’t “get” that Alzheimer’s was a real, brain destroying disease!

If my husband could genuinely remain in the dark after all of his experiences, so can anyone else.

  1. By the time Alzheimer’s disease is diagnosed, it has been present in and changing the brain for years.         Current research indicates that Alzheimer’s may exist in the brain causing neurological deterioration for as many as ten years before symptoms appear.  A disease or condition that has virtually no physiological clues is especially challenging to diagnosis and find treatments for. Physical symptoms like pain, shortness of breath, unexplained weakness, double vision etc. are disconcerting enough to bring one to the doctor.

But Alzheimer’s has chipped and chiseled away at one’s brain long before, years in fact, there are undeniable memory and personality changes that “are disconcerting enough to bring one to the doctor.”

  1. Alzheimer’s is the only disease in the top 10 that currently has no cure, treatment or means of prevention. *      Scary isn’t it!

Early detection is the singular difference in saving lives for every disease or medical condition. And by extension knowledge is power or empowerment to get diagnosed and begin treatment early.

But with Alzheimer’s there is no early detection option.

Most likely Alzheimer’s will always be a disease in which clear symptoms follow well after the onset. Although it is not the only condition that is relatively asymptomatic until it’s “too late”, it is the only one in the top ten.

The hope may lie in biomarkers, measurable indicators like blood sugar levels, heart attack enzymes or CA125 (cancer marker). A test that can indicate elevated risk factors for Alzheimer’s by which treatments can begin before the “too late” point is reached would be epic!

And I for one, look forward to the day when NFL players wear purple shoes!

(*“Battle For Adequate Alzheimer’s Funding Rages On” by Julie Delcour, Tulsa World website)

      August 6, 2014

Six Simple Steps to Quality Dementia Care

A “Respect Your Elders” Approach to Quality Dementia Care     

My mother always taught me to “respect my elders” although she didn’t use those exact words. Being respectful to everyone especially adults when I was a child was her message.

I was probably as guilty as anyone else trying to convince my mom with dementia, later diagnosed with Alzheimer’s, that her thinking or memory was flawed.

That “I didn’t have a baby” nor had I “left it in her closet.” (I was 56 years old at the time)

Or that no one had scaled the exterior walls of her third floor, courtyard view apartment to break in and steal “two pair of brown, petite size 4 pants!”

Or that “seven dollars worth of stamps” had been absconded from the back of a desk drawer so narrow that even her slender arms could barely reach in.

Despite numerous and ever increasingly bizarre situations where my mother adamantly insisted that something – surely misplaced – was stolen or her version of an experience – if it happened at all – was unlikely, my well intended but misguided approach was to try to convince her of the “truth”.

Although my mother’s reality was anything but real, 

Mom’s perceptions of her world were real to her!

My “truth” gave way to her “truths”. Eventually like most dedicated caregivers and family members, I got on board with the new and ever changing Mom and stepped into her world as she saw it.

“Respect your elders.” I remembered Mom whispering to me when my nasty, mean Uncle Leo visited. I either wanted to hide in my closet or give him a piece of my mind. Mom nixed both plans and I quietly ‘respected” him even as I growled under my breath at his horrible demeanor. It helped that my parents didn’t like him much either, but he was family.

I reflected on Mom’s tolerance of disagreeable Uncle Leo and recalled how she bobbled her head during his political rants and avoided confrontation by choosing her words carefully.

This was the model I defaulted to for optimal dialogue with my irrational mother, a dementia friendly model of respecting one’s elders. This approach is far more effective at maintaining a calm atmosphere than being unnecessarily blunt or direct.

The “Respect Your Elders” Approach to Dementia Care

  • Take a deep breath and be patient.                 People with dementia issues may appear stubborn or obstinate, but they act differently due to the condition. They are not making a conscious choice to be difficult.
  • Watch your non-verbal communication especially facial expressions. Someone with dementia may have diminished memory, changes in personality and a host of other problems, but they can and do recognize snide facial changes. Negative non-verbal communication often speaks louder than real words.
  • Reality orientation approaches are ineffective.              You can’t convince or rationalize with someone experiencing disorienting dementia. Their deteriorating awareness and memory skills don’t allow for higher executive functions and logical thinking.
  • Politely agree or remain neutral to almost everything.              If someone with Alzheimer’s says it’s a nice day when it’s raining outside, nothing is accomplished by attempting to tell them otherwise. 
  • Wait a few minutes and try again.      Obviously individuals with Alzheimer’s need care they may refuse to cooperate with, such as bathing or a change of clothes. Refusals are common but sometimes can be managed by waiting and/or trying another approach. In waiting they forget what they were objecting to. 
  • Keep it simple.            Caregivers, especially family members and friends, have a tendency to use too many words when talking to their loved one with dementia. I was guilty too of being overly chatty. Their ability to process language and formulate a response wanes significantly as the disease progresses. The more you talk, the less they get.

From I Will Never Forget, Chapter 33.

Her short-term memory was so unpredictable; I couldn’t know what fragments of the conversation she might recall or how twisted her brain might rearrange them, from fact to fiction.

Please remember that individuals with Alzheimer’s have little control over what they say, how they behave or what they perceive. But as caregivers we do!



     July 12, 2014        


Perception, Loss of Memory and The Brain  

                               How Do We Remember And Why Do We Forget         
The premise of the TNT series Perception surrounds a Dr. Daniel Pierce, a brilliant schizophrenic neuropsychiatrist.  Because of his precise powers of observation and deduction he serves as a consultant for the FBI. In a recent episode that aired 7/2/14, Dr. Pierce’s character describes memory beautifully.

“The brain stores memories in different ways.  Short term memory, where you left your keys…are managed by the hippocampus. But the hippocampus doesn’t keep them for long.  It kicks them out to the cortex where they strengthen or weaken depending on how often you visit them.

Every time you access a memory, neurons are activated and that memory grows stronger.  But ignore a memory too long and you may loose it forever…

Even for all its incredible power, that tangled mass of neurons that you call your brain is a remarkably fragile organ. Take it out of its bone helmet and it’s just Jello vulnerable to the slightest wound…

The hippocampus, by the way, is a seahorse shaped formation in the brain that is involved in the establishment of new memories and consolidating information from short to long-term memory.

In Alzheimer’s disease the hippocampus is one of the first regions of the brain to suffer damage; memory loss and disorientation are included among the early symptoms.

Traditional Memory

To shore up important or quasi-important information like your boss’s spouse’s name, repeating it either silently or out loud helps to reinforce memory and recall. If that memory is not used again it certainly will fade away in the future. Your new garage door code however it reused repeatedly, solidifying the memory in your cortex. Sounds benign enough, right? Not so fast! Some recollections of relatively little significance are imbedded in cement and may never fade away.

Enter, the Adrenaline Rush

I can vividly recall every detail right down to the boring, sage green institutional wallpaper in my OB/GYN’s office the day I found out I was having twins. That was 36 years ago in real time and yesterday in my brain.

From the moment the receptionist saw me, to being ushered down the hall, to the sign she scribbled with the word TWINS that she not so discreetly held up for the doctor to read, to the non verbal head nods and smiles shared between various staff and finally the exact moment after sitting down in his office when he uttered the words “The ultrasound shows you are having twins.”

My memory of that day and especially those 15 minutes is chiseled in my cortex! I can still play it out in my head. It’s understandable that literally five days before they were born and I found out there were two, was an experience I’m not likely to forget. This unexpected news had a lifelong impact! But depending on how old you are, you remember the events of 911, where you were when the space shuttle exploded or when Kennedy was shot. However horrifically tragic these events do not impact our lives as directly, so why exactly do we remember them?       Adrenaline!

“Professor of neurobiology James McGaugh, University of California at Irvine, is credited with the research that Adrenaline is the glue for long-term memory, it makes our brain remember better. If you recall being rejected, insulted, threatened or failing, you can still retrieve those memories because of Adrenaline.

Adrenaline is released in the “Flight or Fight” scenario where we face fear, trauma, stress, shock; your heart may race or you just stop whatever you’re doing to process gut wrenching news and wonderful surprises!

Alzheimer’s Changes

Alzheimer’s Disease plays serious havoc with the hippocampus causing it to shrink.  Because of this hippocampal atrophy, indications of memory impairments are often early symptoms of Alzheimer’s. And the cortex steadily shrivels up too with Alzheimer’s, damaging the precious areas involved in thinking, planning and remembering.

These pathological changes destroy the very essence of the individual by robbing them of the memories that has made up there entire life.  It trusts them into a “reality (that is) anything but real.”  (I Will Never Forget, Chapter 38 Houdini Mom)  Judgment, rational thinking, personality and everything else that defines and separates one person from another, dissolves.
If you’re reading this post, you know exactly what I mean.  Like you, I’ve lived the very real, very ugly, very powerful journey of accompanying my mom through Alzheimer’s. But I love this line from the song by 3.8 Special.  It helped me get through the roughest days.“Hold on loosely but don’t let go.”


     June 8, 2014   

Maintaining Connections

 As Your Loved One Declines, Show Up; Don’t Give Up!

Although Alzheimer’s affects individuals differently, there are irrefutable common threads.  One of the most disturbing outcomes is when the individual no longer “knows” their loved ones. Indeed they may reach a point when they can’t “say” the name of their family member, but they probably still “know” them.

From I Will Never Forget:

Mom’s recovery from surgery was painfully slow. Her first audible words didn’t come (for days).  “That feels good,” she mumbled when I rubbed lotion on her face, but her voice was raspy and weak.

“How do you handle it?” Mom’s nurse for the day, Carol, asked me.

“Handle what?” I honestly didn’t know what she was referring to.

“That your mom doesn’t know you?”

Unbeknownst to me, Carol had overheard me on several occasions ask my mom who I was. Mom’s responses had been either absent or inaudible. Carol offered that her father had early-onset Alzheimer’s and that his not recognizing her was the worst part of the disease. It was my biggest nightmare too. Mom had known me, but since her surgery, I hadn’t gotten anything.

The next day, after applying lotion to Mom’s pitifully dry skin, I tried again to jump-start her recollection of my familiar face. This time, however, when I asked Mom who I was, she finally answered, “Elaine.” I smiled and was reminded of Carol’s question just the day before. So far, anyway, I was still accessible to her fleeting and failing memory.

It is emotionally draining to watch your loved one with Alzheimer’s slowly fade away, helpless to change the outcome.  There is very little validation or reward for you from them.  As painful as their blank stare, mumbling, or “who are you” is to experience or hear, having a better understanding of the disease process and why this occurs, is critical to acceptance and continuing to visit.

Show Up, Don’t Give Up!

Alzheimer’s is a very real neurological disease!  In one way or another our brain controls and/or coordinates absolutely everything we do!  Tragically, as with virtually every neurological disorder, language is adversely affected by Alzheimer’s.  Meaningful verbalization wanes dramatically as Alzheimer’s progresses, sometimes to virtual silence. Although Alzheimer’s may rob a person of their voice, not every mechanism of awareness and expression is destroyed.  Other forms of communication are still viable and vital.

Case in point: From I Will Never Forget:

Then slowly, subtly, a very distinct, bright glimmer of awareness came over Mom.  She sat up, leaned forward, and looked purposefully at Christie (her granddaughter) with Lillian (great granddaughter) sitting on her lap. Mom’s piercing blue eyes had not shown so brightly for some time…There was absolutely no doubt that my mom recognized Christie or, at the very least, knew Christie was an important person to her.

It’s not easy.  It’s not always enjoyable and it’s certainly not always validating to show up to visit your loved one with Alzheimer’s, but don’t give up. Their mumbled speech may be the only verbalization they still have, so make better eye contact. Their flailing arm movements may be more purposeful if you engage them with family photos.    

 April 24 , 2014 

 Multitasking And Memory Skills
The Two May Be Mutually Exclusive
My six-year-old grandson is consistently better than I am at the memory games!  We have played enough times by now that I know it’s not a fluke and I am not letting him win either.  But why? An article written by Matt Richtel entitled Multitasking Takes Toll on Memory, Study Finds may shed some light on why I’m less adept at childhood memory games and other short term attention tasks.
           April 15, 2014  

Accepting Alzheimer’s 

Why Being Cloaked in Denial Doesn’t Help.  

There are many diseases and medical conditions that we fear: a diagnosis of cancer, heart attack, stroke and many more of course. Most conditions have at least some treatment or lifestyle management options, however there are exceptions.
And one of those “exceptions” is Alzheimer’s. Quoting Dr. Oz, “Soon there will be two kinds of people in the world. Persons that have Alzheimer’s and persons that know someone that has Alzheimer’s.” If we’re not already there, we will be very soon. And, being brutally honest, Alzheimer’s is a fatal, progressive, neurological disease from which no one recovers.
It’s not easy to accept the void created when someone you have known for decades may no longer know you, when their memory fades into an abyss and their reality is anything but real. It’s natural that we grab hold of denial, hoping their memory will get better or at least not worse, all the while wrestling with the gnawing truth that they won’t improve, ever!
We try rationalization, logic, reasoning, any and all methods we can employ to preserve their waning essence. Fighting the winless battle of how Alzheimer’s Disease affects our loved one is not only frustrating, it’s futile and wastes precious time better spent engaging in the moment.
Like many situations over which we have little or no control, the operative word is Acceptance. We may not be able to stop the moving train of dissolution that Alzheimer’s creates, but we can jump aboard and ride it to the end. It’s tough.
I know;  I’ve been there. I rambled on and on trying to convince my mom that no one had stealthily snuck into her apartment to steal a roll of stamps – surely misplaced, again – or her black shoes – next to the bed in plain sight – and the coup de grace, a piece of lint! “It was right there,” she snarled, poking the chair armrest over and over.  It was a ridiculous waste of time and energy on my part.
When I finally experienced the proverbial epiphany, a story so laden with drama and absurdity it would take a chapter in a book to tell (oh wait, I wrote that chapter already in I Will Never Forget)  acceptance made all the difference.
Mom had Alzheimer’s. There. I said it!  And with acceptance came a peace. I could not change the outcome, but I could accompany Mom on her journey and be there every step of the way. I found tapping Mom’s past brought some harmony in her disposition.  She smiled when I asked about my grandmother, Mom’s mom, who died when I was six.
She shared snippets of her childhood, things I didn’t know, and stories of her brothers and goofy older sister. The shared moments were fleeting sometimes, and truthfully sometimes absent. But on her good days it was delightful to see her calmer and engaged.

Acceptance is not complacency. 

We still need to advocate for the ones we care about, who can no longer advocate for themselves. We still need to visit, engage, talk to and with, touch, smile, sing to – they won’t notice or care that your voice really should never leave the privacy of your shower or car – connect via every avenue there is with them and often.

Denial and ignorance circumvent the truth and just leave frustration in its wake.  Acceptance, however, empowers us into action in enriching and productive ways.


         March 17, 2014

‘I Will Never Forget’, Award Winning Dementia Memoir By Elaine Pereira Achieves Top Amazon Rankings 

[Detroit MI, March 26, 2014]   ‘I Will Never Forget’, the multi-award winning dementia memoir by Elaine Pereira, recently took the number one position on Amazon in its genre!

Elaine Pereira has written the one book on Dementia that no one else could write. She is a daughter who has lived the Dementia drama, an occupational therapist who understands the neurology and an unwavering caregiver. Pereira’s exclusive perspective has enabled her to produce a one-of-a-kind book about Dementia that encompasses several uniquely special approaches.

While most authors unveil theirs stories chronologically, Pereira’s memoir unfolds in dynamic and creative time shifts, revealing her mother’s decline in a “then and now” format, transitioning beautifully between past and present. “I’m thrilled, ecstatic and humbled,” Pereira stated, “to have finally achieved this prestigious milestone and also grateful to all the supporters who made it happen. 

Like most authors, I have worked tirelessly to promote my Mother’s Story as it is Everyone’s Story.Truthfully my mother’s journey through dementia was difficult, bewildering but also touching as those who have walked in my shoes understand so well.  Alzheimer’s is a horrific disease that robs us of our loved ones and ‘I Will Never Forget’ is a tribute to caregivers everywhere.  As I donate from each book sold to further Alzheimer’s awareness and research, rising to the top spot helps me help others.”

While Dementia is a serious disease not to be trivialized, Pereira believes there are humorous one-liners and anecdotes in all of life’s dramas. She blends her mother’s Dementia induced tragic mishaps, episodes of illogical thinking and agitated behaviors with tasteful hilarity as well as her ridiculous but funny remarks.

The end result is a book about Dementia that is unlike any other book on Dementia ever written. ‘I Will Never Forget – A Daughter’s Story of Her Mother’s Arduous And Humorous Journey Through Dementia’ has received numerous, high-level industry awards. 



So the next time you engage in a conversation with someone with dementia, broaden your interpretation of what’s said.

Don’t Take Them Quite So Literally. Our ability to use language, specifically the spoken, read and heard word, is what defines us as humans. Language, real meaningful reciprocal dialogue, is intricately complex. It involves precise synchronicity in the brain of hearing what is said, processing the meaning of the spoken word and executing a response, all in microseconds.

Conditions and diseases that affect the brain impede the delicate flow of language. Consider the changes in Dick Clark’s articulation post stroke, Gabrielle Giffords after her gun shot injury to her head, or how Multiple Sclerosis impacted Annette Funicello’s speech abilities.

And then there’s Alzheimer’s, an insidious, neurological disease that pretzel twists the gray matter as it gobbles up brain cells. Deteriorating communication skills is just one of many abilities adversely affected by Alzheimer’s Disease. Even as many with Alzheimer’s still talk, what they say and how they say it also “speaks volumes” and we need to “listen” with a different set of ears! I’d like to share the following true story with you. Clearly the message needs to be interpreted less literally and more figuratively.

David’s widowed mother Mariam was experiencing significant decline from Alzheimer’s. Neither he nor his sister Carolyn lived anywhere close geographically to their mom, so they decided to move Mariam into an assisted living center near David’s family in Newport. In that way, his wife, the grandkids and he could then visit Mariam more regularly.

David clearly witnessed his mother’s steady decline. She needed increasing help with all self-care, was wobbly and often confused. David accepted that his mother probably knew he was important or familiar to her, but Mariam had ceased referring to him by name for some time.

Then one weekend Carolyn came into town to see her mom and family. As soon as Carolyn walked into her mother’s room, Mariam perked right up, calling Carolyn by name much to David’s surprise.


Naturally he was expecting his mom to acknowledge him by name too, assuming his mother was having one of her rare but wonderfully lucid moments. Mariam looked at her son and said, “Who are you?”


Masking crushing disappointment he replied, “David.”

“I know a David. He lives in Newport. He use to run track for the Newport high school Huskies, but he’s grown now. He’s about your age, manages his own company, married and has two kids, a son Jonathan. That was my husband’s name, although we called him John; he’s dead now. And a daughter Katherine; Katie they call her. They visit me and bring cookies, my favorite, Snicker Doodles.

Do you know David?”


Mariam’s David was stunned!

She had just described him in perfect detail, except of course for referring to her son as “another David.”

He managed to muster the reply “No, I don’t” before leaving her room to regroup emotionally.

This story was shared with me by a woman – Patricia.

Pat knows Carolyn personally who had shared the incident with her. Carolyn had very mixed emotions about and was bewildered by her mother’s remarks.

I smiled to what I perceived as a delightful story that the family was probably misinterpreting too literally. Patricia looked perplexed initially until I explained.

Although I can’t guarantee it, I am confident that Mariam was referring to her son when she described “David” with such warmth and accuracy. She may have “articulated” the relationship connection incorrectly, but she was talking about her son and grandchildren.

For someone with Alzheimer’s, words really do get “lost in translation”What they say and what they mean are not always in synch, but I, like many others, strongly believe the message is the same.

So the next time you engage in a conversation with someone with dementia, broaden your interpretation of what’s said. Think outside the parameters of the literal spoken words and be willing to hear the intent behind them.

“They” are still in there and it’s up to us to find the best way to interact with them.


February 6, 2014


Please welcome Elaine Pereira as Wednesday’s Guest this week. She had some fun with a mock interview with her mother, Betty Ward, whom Elaine refers to as “the heroine” of her recently released memoir. Sunday I reviewed her book, I Will Never Forget, in which she shared the journey she took with her mother throughout her life, most especially in the years that her mother suffered with dementia.  I thought Elaine and her mother might like a Danish and a cup of coffee while they visit. You can join them. There’s more in the kitchen to share.

Photo Courtesy of Gluten-Free Canteen where you can find lots of gluten-free recipes.

Thank you, Maryann for inviting us here today and for the refreshments. First I’d like to just give a quick introduction to my mother. In 1945 she graduated with a BS in chemistry then went to work at Upjohn CO in Kalamazoo, MI where she met and married my father, Wayne Ward.

They had three children before Betty went back to school for her masters in education. The ‘Life is Good Years’ continued until my father’s stroke in 1995, followed in 2004 by both his death and my brother Jerry’s, and finally my mother’s rapid decent into dementia.

From the ashes of her eventual passing arose I Will Never Forget.  I hope you enjoy meeting my mother in this brief interview in which I pretended to be a reporter.

ECP:   You and Wayne had three children, two sons Gerald and David and a daughter Elaine.  Tell me a little about her.

BW:  Elaine was adorable but spunky and always testing the limits.  I use to say about her and at times to her: “There was a little girl who had a curl right in the middle of her forehead.  When she was good she was very good, but when she was bad she was horrid”

ECP:   That’s funny!  She did stay “horrid?”

BW:    No, but she did remain spunky, which was an asset when I needed an advocate to speak for me when I no longer could.

ECP:   Despite being Catholic, you have some liberal views on certain issues.  Tell us what you don’t agree with?

BW:    I had three children on the rhythm method of birth control so obviously that doesn’t work. Also, I wanted to have our daughter’s name be Elaine but was told by some opinionated nun that there was no Saint Elaine so I couldn’t use it.  Back then the church was pretty strict about using names of saints for our children. We had just buried our 20 month-old son David in August so the idea that the Church would dictate our child’s name while we were experiencing such unspeakable grief, was unacceptable.  Our Parish Priest however overruled the nun indicating that Elaine is a derivative of St. Bernadette.  I laughed! Lastly, I am not an advocate of pro-active measures to end life prematurely but I strongly support a quality of life.

ECP: How sad that you lost your son. What happened?

BW:  It was a car accident. I was four months pregnant with Elaine when it happened, killing little David. The rest of us were injured and the accident created financial devastation. The only thing I could be thankful for was that I didn’t lose the baby I was carrying.

ECP:   You mentioned Elaine was your voice when you couldn’t advocate for yourself.  Can you tell us more about that time?

BW:    Well due to Alzheimer’s, I don’t remember everything (Ha!) but she was my rock!  At times when the dementia fog lifted though, I knew everything she was doing for me and thanked her.  When reciprocal communication was beyond my control I “spoke” with my eyes and she listened.

ECP:    You wandered from your care facilities on two occasions with dire consequences.

BW:    The first time I thought I needed to take the groceries out of the trunk.  It was a crazy, misguided notion because I didn’t have a car anymore, wasn’t driving and hadn’t gone grocery shopping in the middle of the night. Alzheimer’s really plays terrible tricks on your mind!  I fell hard outside and couldn’t get up. The last time, my dementia-induced hallucinations had me seeing my own mother, a wonderful woman who died when I was in my 30s.  I felt compelled to find her, thinking she was across the street and needed me to take care of her.  On a cold winter night, wearing only thin red flannel pajamas, I was able to wander out the front door of my locked facility because someone forgot to reset the alarm.  Five hours later I was found literally near frozen to death in severe hypothermia.

ECP:    Tell us how you feel about having your life immortalized in a memoir.

BW:  Unlike Elaine who shines in the limelight, I’m more private.  She has my blessing though because the intent of her book is to support others on their journey through dementia as well as supporting Alzheimer’s awareness. She and I have always been able to express ourselves verbally and in writing with passion, integrity and honesty. I am proud that Elaine’s legacy is telling this story, one that had to be told, as it is everyone’s story. I am especially proud that she donates a portion of the proceeds from the sale of each copy of I Will Never Forget to support Alzheimer’s research.

  January 22, 2014  IN THE NEWS Elaine Pereira, Author Of ‘I Will Never Forget’, Concurs With A Comprehensive Approach To Help Delay And Manage Dementia

Author Elaine Pereira believes activity, both mental and physical, is a primary key to delaying the onset of dementia. Pereira has written the one book on dementia that no one else could write. ‘I Will Never Forget – A Daughter’s Story of Her Mother’s Arduous and Humorous Journey Through Dementia’ is a dementia memoir that present her mother’s story told from three perspectives – as a daughter, as an occupational therapist and as a caregiver.  or

Elaine Pereira, speaker, Certified Dementia Practitioner and Caregiver and author of the award-winning dementia memoir, ‘I Will Never Forget’, promotes a 5 pronged lifestyle approach to help delay the onset of dementia to manage its effects.


[Detroit MI January 22, 2014]  A recent video on CBS Morning featured CBS News chief medical correspondent Dr. Jon LaPook and Dr. Rudolph Tanzi, professor of neurology at Harvard Medical School and director of the Genetics and Aging Research Unit at Massachusetts General Hospital.In their opinion, clinical trials of medications to treat Alzheimer’s have failed because they target the early stages when in fact researchers now know that by the time someone is symptomatic for Alzheimer’s Disease, they are well past the early stage. Hence the medications don’t work.

Elaine Pereira, author of ‘I Will Never Forget’, a compelling and unique memoir on dementia, believes that brain healthy habits, both physical and mental, are of key importance in regards to delaying the onset and managing the effects of Dementia. “It should come as no big surprise,” Pereira stated, “that, quoting Dr. Tanzi, ‘What’s good for the heart is good for the brain’. The collective ‘we’ have known for decades that a diet low in fat and keeping active physically bode well for cardiac health.  It is true for brain health also.

In addition Dr. Tanzi sites being mentally and socially active and one more key ingredient, sleep.” “This five-prong lifestyle approach of Exercise, Diet, Social Interaction, Intellectual Stimulation and Sleep collectively increase brain synapses and the production of endorphins – or ‘internal morphine’ – those awesome analgesic causing peptides that hang out in our brains.”

Elaine Pereira has written the one book on Dementia that no none else could write. She is a daughter who has lived the Dementia drama, an occupational therapist who understands the neurology and an unwavering caregiver. Pereira’s exclusive perspective has enabled her to produce a one-of-a-kind book about Dementia that encompasses several uniquely special approaches.

In addition, while most authors unveil theirs stories chronologically, Pereira’s memoir unfolds in dynamic and creative time shifts, revealing her mother’s decline in a “then and now” format, transitioning beautifully between past and present.

While Dementia is a serious disease not to be trivialized, Pereira believes there are humorous one-liners and anecdotes in all of life’s dramas. She blends her mother’s Dementia induced tragic mishaps, episodes of illogical thinking and agitated behaviors with tasteful hilarity as well as her ridiculous but funny remarks.

“So walk with your friend(s) to a local café for a light lunch,” Pereira concluded, “discuss the latest news worthy topic and at the end of the day, tuck yourself in for a night of brain refreshing sleep.”


January 22, 2014  On

Lessons I Learned About Life From Someone Approaching Death

“You were so polite,” I said to my brother Jerry as he hung up the phone from yet another solicitor.

Technically one of the three calls that weekend had been a survey, but regardless Jerry was very pleasant with the anonymous person on the other end.

“And why not?” He replied rhetorically.  “They’re just doing their job.”

Of course they were. I dropped my head and turned away as I fought back the cascade of tears welling up in my eyes, again!  My husband, mother and I had traveled to Atlanta from Michigan to visit him. Jerry had scheduled some appointments for us earlier in the day to introduce me to “key people,” the bank liaison for his estate and his insurance agent.   We also popped in the grocery store for a few things and consistent with his gregarious nature he chatted with the cashier, bank officer and waved at the mail lady.

Despite everything he had already and was still going through, he was the pillar of kindness and an amazing role model for everyone. Our family had experienced devastating personal losses and crushing news since 2001.  Married for more than twenty-five years, Jerry’s wife Wendie was diagnosed with inoperable brain cancer, glioblastoma, on New Year’s Day, 2001.  She lived only a month from diagnosis to death.

Jerry’s world imploded with the passing of his beloved wife and despite my brother’s professions to the contrary, I’m convinced he never really recovered. As the months passed, even under crushing emotional loss, my brother always projected an upbeat demeanor, camouflaging his inner hell.  He never retreated into a cave of self-pity or wallow in depression, not that he wasn’t entitled.  In time he even expressed hope that he would find another special lady. I wished that for him too. But it was not to be.

Our lives and consequently schedules were fairly different, so we corresponded mostly by email.  In late winter 2003, Jerry started alluding to “some news” but kept me dangling with innuendos and vague comments.  Finally in early April, I was convinced he was up to something and pressed for more information. This time he wrote back, “I’ll call you tonight with the news.” Then like a truck it hit me; he was getting married! “That stinker,” I thought. I couldn’t wait for his call that night. I was so happy for him and simultaneously a little miffed he had been keeping “her” a secret.

“So what’s up?” I asked quickly when I saw his name on the caller ID. Jerry could ramble on forever so I hoped he would fast-forward to the punch line. He did.

“I saw my doctor today,” he said. “I have stage four esophageal cancer with perhaps a year …”

I never heard the rest. I had gone from being so ecstatic for him to complete devastation in the three seconds it had taken him to tell me. Stunned. Shocked. Horrified. Words could not describe what I was feeling. And my poor brother! To have suffered Wendie’s loss and now his own impending demise was simply not fathomable!

When the initial shock subsided, Jerry discussed his treatment regimen including chemo and powerful medications designed to wage war on his cancer’s destructive demons. As an Occupational Therapist with a strong medical background, I validated his positive efforts, but was very guarded about any likelihood of remission.

A year later in April 2004, our dad died from stroke complications. Our mother had been his selfless caregiver for nine years post stroke. Free to travel, she accompanied us on our trip to Atlanta. Jerry’s ability to project an outward appearance of composure was remarkable. But beneath his façade of strength, lurked the insidious, proliferating cancer that had been stealthily cloaked by his grief.

Jerry either ignored or couldn’t distinguish the symptomatology of his disease from the real physical pain caused by Wendie’s tragic death.

“How do you do it?” I asked him one time.  To his blank look I added “How do you project such a positive attitude with what you’re going through?”

He smiled and shared his wisdom.

Jerry died December 30, 2004.  My husband and I were at his side when he took his last breath. A few hours later, still very numb and fragile, we left Jerry’s hospice facility for the last time and stopped in a local restaurant for some dinner.  Some details are still sketchy but I distinctly remember how patient the waitress was as I struggled to talk or decide what to order.

In the schema of life, and death, food was so trivial. We place such inordinate value on insignificant “things” sometimes. And then I smiled at her the way Jerry had smiled at me months before and remembered his reply.

“Always treat others with kindness. You never know what they are going through. People can’t look at me and know that my wife died or I have terminal cancer.”  He had said.

Although truthfully, near the end, no one could look at Jerry’s completely pale, ashen face, distended abdomen and bald head, and not suspect that something was terribly wrong.

Regardless, his words ring true! I try hard to remember that when the receptionist is abrupt or the teller curt as I don’t know what they might be going through either.


January 1, 2014      

Abbreviated version.  Please read the entire article at: 

Five Reasons to Keep Records on Your Loved One with Memory Issues                                                                     

Being a Parent to your Parent is an uncomfortable responsibility.  We are accustom to being cared for by them, not the other way around.  But if your parent is experiencing memory issues, ignoring or excusing them puts them at risk on so many levels, the most significant of which is their safety.

As difficult as it can be, keeping tabs on them, their medications, appointments, whether they still drive or not (another dramatic issue with significant safety ramifications), etc is critical.  It’s important to keep a log, journal, post-it notes, or the techies might prefer their iPhone, but no matter how you accomplish it, do it! Posted on the Alzheimer’s Reading Room



Author Interview with Elaine Pereira by Kristina Aziz

Read the entire interview at:

Book that changed your life:  Honestly?  Mine!

Why any human should plunk down cash money for your book: (I’m chuckling reading the question and trying to think of a funny comeback equal to the task, but …)

My book is not a side splitting humorous tale of a crazy dog like Marley and Me; I get that.  But it is not a dark, foreboding, depressing, boring story just about someone’s tough life at the end as they’re old and gray anyway.

I Will Never Forget is a powerful, true account of a kind, brilliant, trailblazing woman who earned her BS in chemistry, of all things, in post WWII and then uprooted as a single woman to move across state lines for a new job!

We are an international world today, but it was very, very different in the late 1940s. This memoir is rich in descriptive detail, character development and presents honest and sometimes humbling stories of a family in various stages of crises alternating with happiness and calm.


Book Review of I Will Never Forget by Kristina Aziz 


December 20, 2013  My Interview by Lorraine Reguly.

And a very sincere and complimentary review!  Thank you so much Lorraine.  The complete interview is on her/this site:


December 6, 2013 

Buckets And Other Lists:

A Guest Post from Award-Winning Memoirist, Elaine Pereira

Please read the entire article at:

Buckets And Other Lists: Writing A Book Was NEVER On My Horizon

“I’m one of those annoyingly organized people: a multi-tasking extraordinaire who makes lists for practically everything.  When my mental To-Do list tops three items, I grab paper and a pen and scribble away…..


November 2013

Christmas Magic Is Returning Through Mom’s Spirit.

Please read the entire article at:

My mom was an amazing woman. I was incredibly fortunate to be her daughter, a fact I clearly did not appreciate during my feisty teenage period. But except for a few ugly years of my mouthy disrespect when she couldn’t do anything right, Mom and I were best friends!

My mother was truly one of a kind: a petite, poised, beautiful lady with a hint of rebel spirit thrown in. In the shadows of World War II, she earned her Bachelor’s Degree in chemistry and later a Masters in education. Mom made Christmas magical for the family.

October 20, 2013

Five Alternative Ways to “Talk” With Someone Living With Dementia.

Read the entire article at:


September 3, 2013       Alzheimer’s Confounding Contradictions  

Read the entire article at:


August 2013 A BIG thank you to Tom Matt from Boomer’s Rock at for the great radio interview time.


July and August, 2013   My 5 Part Series: 

How to Communicate With Someone With Alzheimer’s

        When Traditional Words Fail, Try Connecting Through The Senses

Endear For Alzheimer’s:

Dementia and Alzheimer’s are devastating conditions that rob us of our loved ones. One of the most tragic outcomes is their dissolving memory of events, stories, faces and conversations that connect us as humans. It’s heartbreaking when reciprocal conversation wanes into oblivion. I, and many researches, maintain that for the most part, our loved ones are still in there and it’s up to us to find the connection that “speaks” to them. Communication takes on many forms and in the subsequent five articles, I will expand on how to connect through the five senses: Touch, Vision, Hearing, Smell and Taste.            Elaine C. Pereira, MA OTR/L CDP, CDC

When Traditional Words Fail, Try Connecting Through The Senses, is a 5-part series written by Author and former caregiver; Elaine Pereira. We will post each new article in her series on Friday for the next 5 weeks. Her articles are powerful and extremely helpful if you are trying to communicate with someone with Alzheimer’s or dementia. Please read all 5 articles as they are best used in conjunction with one another. Click the links at the end of the article to read all parts of this dynamic series.              Carlos Barrios, Founder Endear For Alzheimer’s

Part 1:  Touch                7/28/2013   

               Talk More With Touch and Less With Words


Part 2: Sound                   8/2/2013 

               Speak More With Sound and Less With Words


Part 3:  Aroma/Smell     8/9/2013                

 The Power of Aromas as Positive Memory Triggers 


Part 4: Taste                    8/16/13                   

Use Your Tongue To Communicate Through Taste


Part: 5:  Vision                 8/23/13                                    

A Picture Really Can Say a Thousand Words                             



Tuesday August 6, 2013         People with Alzheimer’s Say The Darnedest Things    

            Collectively navigating the uncharted waters of caring for a loved one with Dementia is always a work in progress. The only predictable aspect of Alzheimer’s is its unpredictability.  My mom was different from one day to the next and typically within the same day. Her patchwork quilt of reality was a blend of her “real” past and her created present.  Read the entire article at: It’s up to us to adapt to our loved ones with Dementia wherever they are at any given moment: past, present or future.

By Elaine C. Pereira +Alzheimer’s Reading Room


Wednesday July 24, 2013

This is a recent post on Ionia Martin’s blog      


          I would like to welcome my good friend and fellow author back to Readful Things. Elaine has been doing a tremendous amount of work promoting her book and teaching others about the field of Alzheimer’s research. She is also a very kind person, who has been there for me through my own struggles having a family member who is going through this disease. If you have ever wondered about what this cruel disease can do to a person, a family and the patient themselves, Elaine’s uniquely personal perspective may very well be of use to you.

Dementia’s Silver Stars

Tragically as our Baby Boomer generation matures into the Silver Stars, some of those “stars” don’t shine as brightly as they use to, mostly due to Dementia. Alzheimer’s specifically is a devastating condition that robs us of our loved ones.

It also allows for some of the most bewildering events, remarks and experiences that defy logic, reasoning and reality. Since I have literally walked, actually more like trudged, in the shoes of a caregiver to my mother with Alzheimer’s, I am able to share the humor with the heartache; explore the mystifying with the plausible; describe the agitation and the calm…..

Read the entire article at:


Tuesday June 4, 2013 And again it’s been a great week for this Michigan author, this time in Dayton Ohio! 

You can see them by clicking on the links or go the Media Header on my Home Page and see the videos there.


Fox 45 – A wonderful opportunity with Megan on Fox 45


And Living Dayton  An awesome interview opportunity with Vanessa!


Tuesday May 28, 2013             on Fox 2 Detroit with Deena Centofanti!

See the full interview and the incredible colored MRI brain images comparing a normal and an Alzheimer’s Diseased brain:     

I so appreciate every opportunity to discuss my memoir, my intent to donate to Alzheimer’s research and help others know they are not alone!  Thanks!

DSC05754 DSC05755

May 28, 2013   WXYZ Detroit, Channel 7 invited me to the studio for a taped interview about my memoir I Will Never Forget and discussion about dementia and aging issues. Getting miked up for the interview.

Channel 7 Detroit with Malcolm Maddox shown Sunday 6/2/2013


May 7, 2013    5 Tips for Finding an In-Home Caregiver or Home Care Facility “Finding a responsible in-home caregiver, or a reputable Home Care Facility, can be a difficult and delicate undertaking,” says Pereira, “but it’s critically important to follow these steps whether you use an agency or hire your own”

Read the entire article at:  


May 7, 2013        A Tribute to Great Moms Everywhere 

My older brother and I were fortunate to have a great mom. Growing up, I thought my mom was amazing until my obnoxious teenage period, when she couldn’t do anything right. And, except for those years of my mouthy disrespect, Mom and I were best friends.

Read the entire article at:


April 25, 2013       Interview with Jerry Kenney from WYSO, Dayton Ohio


April 26, 2013    The Story Behind the Poem   

Have you ever looked up “Alzheimer’s Disease” in the dictionarynoun Pathology .  a common form of dementia of unknown cause, usually beginning in late middle age, characterized by memory lapses, confusion, emotional instability, and progressive loss of mental ability. In 28 sobering, apathetic words, a disease so catastrophic is defined with such ridiculous impassion.

Read entire article at:

April 17, 2013

Subtle Signs of Mother’s Dementia

We all need to be circumspect of subtle changes in personality, balance, judgment, memory and anything else uncharacteristic in our friends and family. Be Proactive and we can be less Reactive… read the entire article at:


April 4, 2013

Thank you Tron Simpson  @ KCMN-AM  News/Talk for today’s lively and live interview opportunity.

And Bill Martinez on  Cable Radio Network for his great questions and sharing his personal empathy.  I look forward to his invitation to return for a longer, afternoon show.

Plymouth Observer & Eccentric

Tough road: Book tells of mother’s dementia

Written by  Julie Brown  Staff Writer    

Author Elaine Pereira of New Boston wrote “I Will Never Forget: A Daughter’s Story of Her Mother’s Arduous and Humorous Journey Through Dementia.” Pereira’s mom, Elizabeth Ward, was nearly 87 when she died in 2011. She began to show signs of illness in 2005, her daughter said.  Pereira’s book came out in May 2012 and is a first book for the retired school occupational therapist who worked with special needs children. “The story needed to be told,” Pereira said. “It’s a daunting responsibility.” Her mom was in a facility, but Pereira lost her brother and dad the same year, and made the decisions on her mom’s care. She agreed issues of dementia and elder care are key as the baby boomers age. “It’s not a European lifestyle here where family takes care of family. Caring for family can be quite an undertaking,” she said.  She’s pleased with good reviews and “overwhelmingly positive” reaction to her book. Pereira ( hopes to cover costs and donate to Alzheimer’s research efforts “so my girls don’t have to write a book about me.”


March 31, 2013       YouTube Video Book Trailer  of  I Will Never Forget 

Thank you so much to Scott Lorenz, President, and his superb team at         Westwind Communications for the poignant promotional Book Trailer of my memoir/


March 30, 2013           Guest Post on Bookingly Yours Blogspot

Please check out the wonderful guest post on Bookingly Yours.  Thanks Jenai – I so appreciate the opportunity for such a lengthy promo spot, links and the new YouTube Trailer as well.


February 28, 2013    Rick and Steve from NetCastleStudio Audio Interview

This is a wonderful interview with well thought questions from both gentlemen touching on respect of our elders, how dementia’s journey impacts both the individual and the family and so much more!


February 20, 2013      An Academy Award for Caregiver’s 

Caring for someone else on a long-term basis is both a powerfully rewarding and an emotionally draining task. I know; like many other people, I’ve been there. If you are a friend or family member, you do it out of love and caring for someone who deserves your support. And typically you do a better job because you have a relationship with and a vested interest in the person in your care. But it comes at a price, doesn’t it?

…read the entire article at:

January 16, 2013     

Dementia Caregiver’s Survival Strategy – The Humorous Side 

Apparently my mom was adamant that someone had stolen her pants. Out of sight on the other end of the phone, I rolled me eyes. Someone stole her pants. How ridiculous, I thought.  
Not to make light of memory loss issues and exhaustive caregiver efforts to patiently redirect an agitated and/or bewildered individual, but dementia has a funny side too.Some stories border on unbelievable were they not so real… Read the entire article at:
December 23, 2012  
Christmas Memories Past and Present 
My heartfelt thoughts are with all of the caregivers, families and friends of anyone with Alzheimer’s as you approach the present Christmas and also for those, like me, who have already lost someone and have only memories of Christmases past.  Read the entire article at:  

November 24 2012 

Seatbelt Controversy:  Safety or Restraint  

After more than 35 years working as an occupational therapist, originally in an adult rehabilitation setting but for most of my career as a school therapist, I have received considerable training in maintaining client safety.

Seatbelt  Safety  Therapists perceive and use seatbelts as safety belts. Belts secure physically challenged children and adults in wheelchairs so they can be transported safely or mobilize themselves without the risk of falling out and/or over.

Seatbelt Restraint  By striking contrast however “seatbelts,” those same innocuous strips of webbing referred to so affectionately as safety belts, are perceived as unacceptable restraints in some populations, mostly non-ambulatory adults with disorienting dementia!

Read the entire article at:    or


November 6, 2012  

Alzheimer’s Changes-It’s Not Just Trains They Forget 

“I will never forget that train ride,” Mom said. “That was really something.” Ultimately, however, she did forget it, like virtually everything else.  Read the entire article at:


October 29 2012      WGVU Morning Show with Shelley Irwin  


October 24 2012      Book Goodies with Deborah Carney  


October 24, 2012    McNights Long Term Care & Assisted Living Magazine

        What a Professional Caregiver Should Never Forget

Regardless of your role providing assistance to another, never forget that the screeching, defiant woman whom you are helping to dress is someone’s daughter, mother or best girlfriend. The man who desperately needs assistance with oral hygiene but has his teeth clenched tight refusing your help, might have been an administrative CEO.

Read the entire article at: 


September 11, 2012  The Reviewing Shelf Pragya Sharma 

I believe it is extremely difficult to write a book like this. Being so close to your loved one, watching them die and then to be able to pour it out into words needs extreme courage.

Read the entire review at:


August 18 2012   The News Herald   by Andrea Blum

Elaine Pereira’s relationship with her mother was similar to that of many other daughters. But the last few years of her mother’s life were anything but typical.  Those years tested the strength of their bond and taught Pereira the true meaning of unconditional love. Her mother — Elizabeth Ward — suffered from dementia during those years, and Pereira found herself dealing with a person who very often was unlike the loving, accomplished mother she’d known growing up.

Read the entire article at: 


August 2, 2012    Third Age: 

      Health Close-Up: “I Will Never Forget”

On Christmas morning, 2009, I prompted my mom to join me in the kitchen so that we could begin dinner preparations. Company cauliflower was a long-standing holiday favorite. I got out the coveted recipe card and put it in the recipe holder that Mom had cross-stitched for me years before. I noticed that she was staring at the recipe. Then it hit me: Mom couldn’t process what the recipe instructions were telling her to do. It was mind numbing! This woman had taught high school calculus and now couldn’t read a simple amount like “a half cup of milk” and know what to get out or how much to pour.

Read the entire article at:


June 2012        A Caregiver’s Journey 

Growing up, I thought my mom, Elizabeth Ward, was amazing. That was, of course, until I ventured into the obnoxious teenage period, when she couldn’t do anything right. Except for those three or four emotional roller coaster years of my mouthy disrespect, Mom and I were best friends. Now, my best friend is gone. Alzheimer’s has claimed yet another victim, choking Mom’s kind, talented spirit to dust, last July 8, 2011.

Read the entire article at:


May, 2012   MLive: Kalamazoo Gazette on-line paper   Mother’s Day Tribute        For Mother’s Day, Kalamazoo native shares tale of mom’s struggle with                        Alzheimer’s, focuses on happier times.


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