Category / Alzheimers Dementia

Dementia LIVE®: Caregivers Experience Dementia in Real Time

September 8, 2020

Presbyterian SeniorCare Network
September 2020

Dementia LIVE®: Caregivers Experience, Dementia in Real Time

Imagine that you’ve been given seven

minutes to accomplish a verbal list of

five tasks. Sounds easy, doesn’t it? You

must find the white sneaker and tie the

shoelaces. Then you must find your change

purse and count out $.57. Now locate your

checkbook and sign your name on a check.

Now hang up the red blouse and move it to

the rod. No, that’s the pink blouse—where’s

the red one? Got it. Now… wait, what was

the fifth task? Oh, yes—water the small

plant. Oops—time’s up.

 

IS STAYING AT HOME A SAFE OPTION

FOR YOUR PARENTS?

If you’re wondering why those five easy tasks

could hardly be accomplished in seven minutes,

it’s because you were wearing headphones that

played a range of muffled sirens, train whistles and

crowd sounds that made it hard to concentrate. Add

to that a pair of blackout glasses that narrowed your

field of vision and thick cotton gloves that made it

hard to feel and manipulate items.

You’ve just gotten a glimpse into daily life for a

person living with moderate to late-stage dementia.

That’s the idea behind Dementia LIVE®, a

dementia simulation program that’s helping

caregivers get inside the minds of the people they’re

caring for, resulting in a deeper understanding of

what it’s like to live with moderate- to late-stage

cognitive impairment and sensory changes. The

headphones simulate the inability to process and

discern important sounds from background noise;

the glasses simulate vision impairment from agerelated

eye problems; and the gloves simulate the

loss of touch sensation and fine motor skills that are

common with aging.

 

Presbyterian SeniorCare Network uses Dementia

LIVE training for all direct caregivers throughout

the network so they can use their personal

experience and apply it to their relationships with

residents living with dementia.

 

Because dementia is so individualized, I

have to respond in the right way for the

person I’m interacting with—and the

key to doing that is getting to know that

resident personally.

-Bridgette Siciliano

 

 

For Kelly Frame, lifestyle engagement associate

at Woodside Place, and Bridgette Siciliano,

administrator of personal care at Woodside Place

and Adult Day Services, both at our Manchester

Commons community in Erie, the Dementia LIVE

experience was a real wake-up call. “I was surprised

that people would have to live like that all the time,”

Kelly says. “It makes you understand how having all

that stimuli could be overwhelming for someone.”

“I found the experience aggravating—it created so

much anxiety,” says Bridgette. “I didn’t expect so

much noise—it was hard to focus. The experience

has given me a better understanding of the residents

and what they’re going through.”

 

The goal of the Dementia LIVE experience is to

help each caregiver become the most compassionate

caregiver they can be through a deeper

understanding of dementia. “Dementia LIVE made

me realize that every person’s dementia is unique to

them and the right way to help one person might not

work for another person,” adds Bridgette.

Being person-centered is at the heart of everything

we do at Presbyterian SeniorCare Network, and

Dementia LIVE is just one more way we train

our caregivers to be their best. “I feel that we,

as caregivers, have to constantly evolve and be

flexible with our residents because their dementia is

changing them,” says Jill McMurdy, RN, Woodside

Place neighborhood manager at the Network’s

Oakwood Heights community in Oil City. “We have

to meet each resident where they are and live in the

moment with them. A resident might not remember

my name, but they know my face, my smile—they

can feel my compassion and know that I’m here

for them.”

 

DEMENTIA LIVE®: FROM A COACH’S PERSPECTIVE

In the year that Presbyterian SeniorCare Network

has been using Dementia LIVE® training, our

dementia care coordinators and certified dementia

practitioners (CDPs) have embraced this immersive

technology, successfully training 549 employees

across the organization. In 2020, all team members,

regardless of their role, will receive Dementia

LIVE training as part of their new-hire

orientation, exemplifying the value of the training

in our communities.

Beth O’Brien, social services director at our

Oakwood Heights community in Oil City, recently

was named a Dementia LIVE coach of the quarter

by AGEucate, the company that markets Dementia

LIVE. She is both a CDP and a Dementia LIVE

training coach. According to Carrie Chiusano,

executive director of the Presbyterian SeniorCare

Network Dementia Care Center of Excellence, Beth

was singled out for the award because of her excellent

communication skills.

“Beth takes the time to truly listen to others. She

hears their messages, observes nonverbal cues and

adapts the mood to make sure everyone is

at ease,” says Carrie. “Beth doesn’t just take the time

during Dementia LIVE trainings. She is present

in the neighborhood for real day-to-day teachings.

She’s there, right in the moment, sharing her

knowledge every chance she gets.”

The most powerful part of training for Beth is what

she calls the “aha moment”—the point of realization

that hits someone and reveals what it must be

like for a person living with dementia. “That aha

moment gives them firsthand experience and will

change the way they interact with our residents,”

says Beth, “The empowerment session at the end of

the experience also is very rewarding. It allows me

to debrief the group and use real-life experiences to

teach how we should be approaching and working

with people living with dementia.”

Memories of a Sweet Treat With Mom

July 29, 2020

The tradition of 'froyo' at Bloomingdale's offered a respite for mother and daughter
By Candy Schulman

Whenever I’m in the neighborhood, I stop for a frozen yogurt in New York City’s Bloomingdale’s. Whether I’m shopping or not, I’ll head all the way up to the seventh floor to Forty Carrots just for their swirled refreshing treat. I pass on the sugary add-ins but in summer, when fruits look local and fresh, I’ll top it off with their original flavor with berries. I don’t even have to be hungry to sit and savor, spoon by plastic spoonful, slowing down when I inevitably get brain freeze.

Surprisingly, what I’m craving is my mother. Sharing one large “froyo” was our peaceful respite, détente from arguing over what clothes I should wear, my career choices, my parenting style. For those few moments, I was a small child again, out for an ice cream cone with mommy.

On Sundays, Mom would take my grandmother out from her nursing home for an ice cream cone. Afterwards, she’d drive us home from Jersey City to Brooklyn, staring intensely into the highway, a mysterious pained expression on her face. She’d flip on WOR talk radio to fill the silence.

Stories From a Painful Time

I didn’t know that Grandma’s nursing home was on the same grounds as the orphanage where my mother had lived from age six until her teens. Mom waited until her mid-eighties, when her Lewy Body dementia was progressing, to tell me, “My mother was too poor to keep me at home.”

The Jewish Home for Orphans, where my mother grew up feeling abandoned and unloved, was eventually transformed into a facility for older adults in need of full-time care. The chapel where Mom took Hebrew classes was still there, as were the painful memories where she went weeks, sometimes months, without a visit from her overburdened widowed mother.

She learned to keep her emotions to herself. Cool, sweet frozen yogurt dulled her pain for just a little while.

“She arrived through Ellis Island from Poland at the age of 17 without money or a word of English,” Mom finally explained, sounding more like an oral historian than someone struggling with the remnants of childhood trauma through unexplained fits of rage. “She migrated to this country after a jilted love affair. She went to night school immediately, learned the language. She worked in a factory by day and scrubbed floors in an office building at night.”

My mom saw her father only a couple of times. He died of tuberculosis when she was 10. My widowed grandmother made and sold bootleg gin during Prohibition, and took in boarders for income.

“But she didn’t have room for me,” Mom told me, her voice finally shaking as her abbreviated autobiography continued. “One day she said to me, ‘You don’t love me like a child should,’ and without thinking I said, ‘How could I? When all these years someone else brought me up?’”

She learned to keep her emotions to herself. Cool, sweet frozen yogurt dulled her pain for just a little while.

A Forced Intimacy

We shared froyo before, during and after the food trend started. She’d buy me outfits she insisted would flatter me in the Bloomingdale’s near her condo in Hollywood, Fla. We’d take a break for fuel at a more generic version of Forty Carrots than the flagship location on 59th Street.

I’d return the clothes when I got back to New York, fashions nobody would wear up north. Once, I received a snarky letter from Customer Service saying I was returning too many items. I used the refund to fund another plane trip to visit Mom.

I never left the store before soothing my spirit with frozen yogurt, alone, grieving over my mother’s decline in old age, the way Jewish mourners bring sweet pastries to shivah calls after a death to dull the pain of loss.

After I insisted Mom was no longer able to safely drive, I sold her car, let her license lapse and steered her to Bloomingdale’s in my rented car for frozen yogurt. When she could no longer use a credit card, I’d pick up the tab. When she needed me to escort her to the restroom afterwards, I obliged, ignoring my discomfort.

Once she asked me to take her to lingerie. I hadn’t even bought my daughter her first bra yet, and I was measuring my mother’s bust size, selecting something soft and flattering, guiding her into the dressing room, even fastening the brassiere when she was unable to figure it out.

Our forced intimacy had become commonplace, yet it always felt awkward and invasive.

The first time I saw her breasts when I was still a flat-chested teenager yearning to be as developed as my friends, I was shocked at how large they were — she was only a “B” cup, but she looked as zaftig as my well-endowed grandmother. Now, Mom’s breasts looked droopy and deflated, surrounded by folds of skin that hung from her torso.

“Something’s happened,” she said, staring into the mirror. “You’ve become my mother.”

‘Makes a Girl Look Like What She Ain’t’

Another time, she wanted to stop at the makeup counter. A woman with collagen lips gazed at my mother through eyelashes favored by silent movie stars. So began Mom’s first makeover since the heart surgeon implanted a stent in her blocked artery. I was dubious about makeovers, but in 10 minutes the garish black smudges above Mom’s eyes were gone. In spite of being an accomplished sculptor, my mother could no longer hold her hands steady enough to apply her makeup.

“You look great,” I told her.

“All that powder and perfume and paint…makes a girl look like what she ain’t.”  Smiling, Mom was pleased to remember this phrase when she couldn’t recall my ZIP code. “Your turn.”

Reluctantly, I glanced in the mirror. “Anything to hide the dark rings under my eyes?” I asked.

“I’ve been telling her for years to cover those dark rings,” Mom said to the woman at the counter.

Ten hours of sleep a night and a vacation from the constant worry about my mother’s health might be the best prescription for the bags under my eyes.

“You need hydration,” the makeup artist said urgently, patting my skin with concealer.

In minutes. my face looked lighter, brighter, less haggard.

“Ever notice how many mothers and daughters are here, sharing yogurt?” my daughter observed.

“You both look ten years younger!” she pronounced, and that was enough for my penurious mother to consent to buying the ingredients for transformation. We left with two tiny shopping bags, a $250 tab and the doubt that we’d use these magic potions as effectively at home.

In the car, my mother kept lowering the visor so she could see her reflection in the mirror. “I like it,” she said. “What do you think?”

It makes her look like what she ain’t. “You look ten years younger,” I said.

“So do you,” she said. “Wouldn’t it be wonderful?”

A Mother-Daughter Tradition

After Mom died, it took years for me to return to Forty Carrots. Back in Bloomingdale’s, I was now shopping with my teenage daughter. Unlike my mother, I let her select her own styles. Like my mother, I taught her how to shop the sales. And we always finished up with frozen yogurt.

“To Grandma,” my daughter said, as if toasting cocktails. Her memories of my mother were less conflicted, not fraught with criticism and disputes.

Our routine continued as my daughter graduated from college, got her first and second jobs, moved into her own apartment.

“Ever notice how many mothers and daughters are here, sharing yogurt?” my daughter observed, amused, her lips rimmed with chocolate, her preferred flavor.

“Tradition,” I said, and we started humming the song from Fiddler on the Roof, my mother’s favorite show. It used to embarrass me when she’d sing this in public, but now I unabashedly belted out the tune.

These days, I dash into the Bloomingdale’s in Soho, which caters to hipper and smaller-boned women than me. I ask a saleswoman where Forty Carrots is. “It’s just been renovated!” she says in a chipper voice. “You’ll love it.”

It feels a bit too modern and stark, but I settle in with a frozen yogurt, slipping their new perk of a punchcard into my wallet, wondering how long it will take to get a free one. To you, Mom, I silently say, wishing she were here to share one with me. I can never finish it myself.

By Candy Schulman

Candy Schulman’s award-winning essays have appeared in The New York Times, The Washington Post, The Chicago Tribune, Salon and elsewhere, including anthologies. She is working on a memoir about mothers and daughters. She teaches writing at the New School in New York City.

 

OPINION: My Case for Getting Dementia Testing

July 22, 2020

Why I want to know if I have cognitive impairment
By Paula Spencer Scott

 

I lose my glasses, forget actors’ names, repeat stories to my kids. None of these slips are red-flag symptoms of Alzheimer’s. Nevertheless, I’ve had a battery of cognitive assessments, from memory screens to genetic tests and brain scans.

Why? Because the science of brain health is advancing rapidly. Given my distressing family history of dementia, I prefer to err on the side of “knowledge is power,” rather than “ignorance is bliss.”

Earlier this year, to my surprise, the U.S. Preventive Services Task Force (USPSTF) chose not to recommend cognitive screening for asymptomatic older adults, saying the “evidence is insufficient to assess the balance of benefits and harms.” While evidence of harms of cognitive screening is limited, USPSTF says, some studies have shown “higher stress, greater depression and lower quality of life in persons aware of a diagnosis of cognitive impairment.”

Once I discovered the growing body of evidence that it’s possible to reduce some risks of Alzheimer’s or delay onset, I had to know: Where do I stand?

I worry the net effect of this recommendation might be for people to think dementia testing is pointless — when its upside, underscored both by my own experience and experts’ insights — is huge.

Lifechanging, even.

“Cognitive screening” typically refers to brief tests like Mini-Cog, MMSE, MIS, and MoCA — the kind where you draw a clock face, recall words or count backwards by sevens to evaluate thinking skills. They’re part of Medicare’s annual wellness visit. The Self-Administered Gerocognitive Exam (SAGE) is a similar self-administered screen. Increasingly, people without symptoms also get other, prevention-focused tests — again, to assess status rather than to diagnose — including more detailed neurocognitive evaluations, physicals, labs and brain imaging (CT, MRI, PET).

I’ve had them all. Sadly, comprehensive testing isn’t financially or logistically feasible for everyone today. (My expensive scans, for example, were for a study I’m enrolled in.) Here’s why testing should be made more accessible and available:

To Get Clarity About Your Dementia Risks

Really: I’m no hypochondriac or test fanatic. But it’s one thing to hear of general risks and another to know your individual status. Once I discovered the growing body of evidence that it’s possible to reduce some risks of Alzheimer’s or delay onset, much the way doctors now assess cardiac risk factors for heart disease and stroke, I had to know: Where do I stand?

My mental slips made me nervous as I underwent cognitive performance tests during a brain-health educational program I attended, again at the University of Texas-Dallas Center for Brain Health and at Weill Cornell Medicine’s Alzheimer’s Prevention Clinic, where I’m enrolled in two studies.

Thankfully, I aced them. Imaging showed no brain shrinkage or amyloid plaques, both dementia precursors. Yet, other testing revealed a number of modifiable risk factors setting me up for worsening future scores, including high homocysteine (an amino acid linked to dementia that’s remedied with B vitamins), a thyroid condition, sub-optimal cholesterol and a sad fat-to-muscle ratio.

To Motivate Behavior Improvements

There’s nothing like proof of weakness to motivate behavior change. For the first time in my life, I joined a gym and hired a trainer and began brain-beneficial high-intensity interval training. (Just walking — my old exercise — wasn’t enough, I learned.) I became even more vigilant about my Mediterranean diet, took prescribed supplements, learned “brain breaks” like mindfulness and more.

Two years on, my improved cognitive scores and lower cholesterol keep me going. As does finding myself in stronger shape at 60 than I was at 40. (True, I gained several pounds…but of muscle.)

I now run every choice I make through the lens of my brain health: Is this helping or harming?

For someone else, testing might raise urgency about lousy sleep, hypertension, poor glucose control or stress. Swiss researchers have suggested that having “motivational reserve” — motivation to improve one’s cognitive health — may even have a protective effect on the course of mild cognitive impairment.

To Establish a Cognitive Baseline

Would knowing my cognitive status also be a useful comparison to future changes? I asked this of some geriatricians. Absolutely, Dr. Howard Fillit, who’s also a neuroscientist and founding executive director of the Alzheimer’s Drug Discovery Foundation, told me.

“Data shows that fifty percent of people with Alzheimer’s aren’t diagnosed until the moderate stage,” he said. “People say, ‘There’s nothing you can do.’ That’s where I really go nuts.”

The sooner cognitive symptoms are noted, the sooner that any reversible explanations (like polypharmacy, low B12 or depression) can be considered. The sooner helpful medical care can begin, too; if not medication (the current crop is unimpressive), then joining clinical trials, putting memory supports in place or managing other conditions differently. For example, Fillit’s own father, a meticulous diabetic, repeatedly landed in the hospital before anyone realized he was misdosing insulin due to mild cognitive dysfunction.

To Help My Family

Some say they’ll worry about their cognitive status down the line. Not a great plan, said Dr. Leslie Kernisan, geriatrician and founder of Better Health While Aging, an educational site on health and caregiving. “There’s a gray area when people around you are worried before you are. You’re putting yourself and others at risk, but refusing to go to the doctor, mismanaging money, continuing to drive and ferociously resisting help.”

An average of two years of this turmoil ensue between family noticing symptoms and diagnosis, according to Fillit. By then, it’s usually too late to competently take part in detailed, dementia-specific advance planning.

“If you want to spare your family the norm, get evaluated,” Kernisan said.

To Ease Anxiety

Finally, many avoid cognitive testing due to a fear of finding out. I don’t get it. Research isn’t finding increased anxiety or depression from cognitive testing, as the USPSTF noted. Many people find relief in getting clarity, one way or the other. Anyway, most of us are the worried well: 97% of those 65-74 and 83% of those 75-84 don’t have Alzheimer’s.

Worth remembering: None of these tests can definitively say if you have, or will get, Alzheimer’s. Not even testing for the APOE-4 gene variant that carries a higher Alzheimer’s risk. Yes, I welcomed this controversial test, too. Though curious, I knew it doesn’t predict anything; it’s just another bit of useful data to inform choices and plans.

Like so many, I’ve experienced dementia’s dreadfulness up close, as it haunted five beloved relatives and upended our lives. Keeping a sharp proactive eye on this specter feels far less stressful than letting it sneak up on me unawares.

(Next Avenue invites opinion pieces that reflect a range of perspectives. Doing so helps our readers learn about views from a multitude of experts.)

By Paula Spencer Scott

Paula Spencer Scott is the author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers and Like Mother, Like Daughter. A longtime journalist, she's also an Alzheimer's and caregiving educator.@

 



Take a Break

June 25, 2020

Are you a full-time caregiver for someone with Alzheimer’s or dementia? A little breather may be just what you need.

Alzheimer's disease is life-changing for both those who are diagnosed and those close to them. Having a helping hand when you need it is key to keeping yourself, and your loved one living with dementia, healthy and happy.

When you need a break, consider adult day services.Not only is it good for you, but it’s good for your loved one. Adult Day Services offer people living with Alzheimer's and other dementias the opportunity to be social and to participate in activities in a safe environment.

Adult Day Services may be for you if:

  • You are a full-time caregiver: Adult Day Services can provide a much needed break. While your loved one is at adult day, you'll have time to rest, run errands or finish other tasks.
  • You work during the day: Adult Day Services can help you to balance a job with caregiving duties.
  • You want a safe, caring environment for your loved one:  Adult Day Service is a chance for your loved one to share time with their peers. It provides a chance for them to be social and to participate in engaging activities such as music and exercise programs, as well as fun outings. 

Did you know that Woodside Place of Presbyterian SeniorCare Network offers Adult Day Services at its campuses in Oakmont (412-828-5600) and Manchester Commons (814-838-9191)? We are here to help!

Taking a Familiar Walk: Dementia Amid COVID-19

June 12, 2020

A daughter experiences the neighborhood from her mom's perspective
By Laurie Matlin

My 95-year-old mother has reached the limits of her patience with the daughter in her basement. As one of her nine children currently helping out, I take no personal offense. Even for people without dementia, COVID-19 can complicate a well-planned life.

“I’m going away,” she declares one mid-spring day. “Everyone in this place has something to do but me!” My dad and I have just emerged from his office from where we ordered groceries online. She doesn’t understand this new system, and she believes I have overstepped my role.

Mom finds her wool coat and struggles with its zipper. Dad leans in to see how he can help. They turn to me, and I quickly zip the uncooperative coat.

As a power play among younger people who might wish to exert control, running away can be particularly problematic for people with dementia like my mom. Yet here we are, Dad and I both acting as accomplices as if Mom were a temperamental kindergartner bound to return before dinner.

She reaches for her hat and scarf. “Do you want the red one?” Dad asks helpfully. She ignores him and grabs the gray hat with matching scarf. Strands of frizzy silver curls slip out from under her cap, and she slides red Keds onto her feet. Wearing the same sweat outfit she has donned over the past few days, she suddenly looks more youthful.

“You can’t come with me!” she barks at me. Dad pleads for her to reconsider.

“I’m going away,” she declares one mid-spring day. “Everyone in this place has something to do but me!”

“I’m just going for the mail,” I tell her. Stay non-confrontational, I whisper to Dad.

With Dad on one side and me on the other, she manages a step from the front door, then another step off the stoop. Her eyes narrow, and she begins a steady pace along the front sidewalk.

She pauses at the driveway. “Which way did Sam go?” she says aloud to no one. Sam was my late brother with Down syndrome who regularly walked to a bus stop for his job.

Mom looks left, starts in that direction, then stops.

“There’s neighbors there,” she speaks again to herself, allowing me privileged insight as to how her mind is working.

Following Closely Behind

She glances in the opposite direction and sees a hill. “That’s too high,” she says, and I marvel how one part of her is speaking for another part to hear. She resumes her original direction, but now crosses the street.

“Hi Fran!” Pauline, the neighbor she sought to avoid, waves after watching for a bit. Mom makes no acknowledgement, her feet pattering on the pavement. Ten feet behind her, I serve as her shadow in stealth. I smile at Pauline, shaking my head and pointing to my ears to suggest Mom’s hearing inadequacies.

I follow Mom down the hill and around the bend. Tracking her requires few skills attributed to private eyes; I could have practically stepped on the back of her shoe without being spotted. While systematically on guard, she is less capable of easily turning around.

The neighbor teen on his driveway peers momentarily at this odd-looking lady who is overdressed in temperatures approaching 80 degrees. He smirks, resuming the whump, whump, whump of his basketball before pivoting in an easy layup.

From the other side, the mail truck approaches. The mailman looks at Mom as if he’s unsure how he might be of help. While swift for a person her age, Mom walks gingerly, almost like a child with autism, her big toe angling up, and it is perhaps this rigidity that alerts the viewer that something is slightly off. Mom slows at the tree, grabbing a branch. She seems to wish to wait for the mail truck to pass before resuming her plan.

It is at that moment that she turns around and finds me standing at her back. “Hi Mom! What are you doing over here?” I feign happy surprise that our paths should cross at just this moment. The ruse seems to work. “I am heading over there,” Mom points with no rancor in her voice.

I fall in line with her pace and we turn down another street. “The road is closed that way. Maybe we need to go a different way,” I suggest, pointing to the diamond-shaped construction sign. She continues past the sign. We proceed as two toddlers locked in parallel play, aware but not working at all together.

A Walk She Needed

“Where are you going?” I ask after a bit.

“Sam walked this way to catch the bus. It took him downtown,” she explains.

“And then what?” I ask.

“Who knows?” she replies without pausing. She tolerates my presence, perhaps welcoming another mind to support her if things turn rough. I marvel at the workings of her plan, as if following breadcrumbs left by Sam in a different time when buses operated because that’s what buses are supposed to do.

“Why do you want to go downtown?” I ask.

“I want to get to the railroad. Where my father worked,” she explains. She has talked recently about her need to get to her father at the train station, a commuter system that no longer exists in our town. Her father died a half-century ago.

She says she needs to rest and maneuvers herself atop a a tree stump cut at waist level. She watches the birds and feels the breeze, then eventually gets up to walk again.

“You’ve come an awful long way,” I suggest.

“I thank you for walking with me,” she says so softly I lean to hear her words. She still doesn’t look at me, but her voice conveys warmth that surprises me.

No answer.

“I wonder if we might turn around,” I probe gently.

“I’d like to get to the top of the hill,” she starts and then seems to change her mind. She turns around, like Forrest Gump who abruptly ends after running across the country.

“I thank you for walking with me,” she says so softly I lean to hear her words. She still doesn’t look at me, but her voice conveys warmth that surprises me. There is something she needed in this, I realize.

Life Is More Than Just Staying Alive

We continue silently, less fast-paced than on the outward jaunt. She rests at times, but then starts moving again. She reaches the side door to the garage.

“Do you need a hand?” Dad’s face suddenly appears at the doorway, surely watchful for her return.

“No, I can do it myself.” Her voice is resolute but without confrontation. Still, she takes his hand, then ambles up two steps.

When she turns, her eyes suggest a glimpse of a larger world. Her autonomy expanded just a little, other parts loosened from more rigid bounds. In this moment, her opinions still matter and her inner compass is shaken to new life. She looks straight at me.

“Thank you, Laurie,”she says, as if for that moment she can see me as something more than the invader in her land.

Life is more than just staying alive, her presence seems to say. Like unsteady feet on pavement, uncertainties will always arise. “Let life happen to you,” the poet Rilke wrote more than a century ago. “Life is in the right, always.”

The dual punch of dementia and COVID-19 is not easy, not even one little bit. But if we pay attention, maybe there’s still something we can learn.

By Laurie Matlin

Laurie Matlin is on personal leave from her job as a hospital and palliative care chaplain resident while she helps to care for her parents. A former journalist, she has been keeping a video diary of what she calls a sacred time in her family's life.    

Detecting Early Onset Alzheimer’s Disease in Innovative Ways

November 25, 2019

Thanks to new funding, research on biomarkers and blood tests moves forward
By George Lorenzo

The progression and symptoms of early-onset Alzheimer’s Disease, typically identified in patients in their 40s or 50s, can vary dramatically depending on the individual. According to the Alzheimer’s Association, “getting an accurate diagnosis of early-onset Alzheimer’s can be a long and frustrating process. Symptoms may be incorrectly attributed to stress or there may be conflicting diagnoses from different health care professionals.”

The Alzheimer’s Drug Discovery Foundation (ADDF) is working to eliminate such conflicts through its $50 million Diagnostics Accelerator program. It’s aimed at supporting the development of “novel biomarkers” for the early detection of Alzheimer’s and related dementias.

“The health of small blood vessels is an increasingly recognized component of dementia and AD.”

“We want to accelerate the science,” says Dr. Howard Fillit, founding executive director and chief science officer of ADDF. That means providing funding to support innovative research to quicken the process of developing and implementing clinical trials required for regulatory approval of Alzheimer’s diagnostic tools and programs.

Developing Biomarkers

The onset of Alzheimer’s, in general, is currently diagnosed through: mental and neuropsychological tests performed by primary care doctors and/or neurologists, along with a review of a patient’s medical history; genetic testing that identifies the APOE e4 gene associated with early-onset Alzheimer’s; a PET scan or invasive spinal tap that may reveal the presence of amyloid plaques and/or tau tangles in the brain and a CT or MRI that can identify vascular dementia.

All of these solutions are relatively expensive (excluding mental testing), time-consuming, challenging to take advantage of, and, in some cases, not administered properly nor proven to yield 100% valid results in diagnosing Alzheimer’s.

“We must now develop inexpensive and noninvasive biomarkers, preferably blood tests, that will help diagnose Alzheimer’s disease and track the effectiveness of treatments,” wrote Fillit in a recent article published in Scientific American.

4 First Round Award Winners

ADDF’s first round of award recipients, announced on May 30, 2019, allocated approximately $3.5 million to two Alzheimer’s diagnosis blood tests and two retinal imaging R & D programs. The four — Saliha Mussaoui, Amoneta Diagnostics, based in France; Kaj Blennow, University of Gothenberg, Sweden; Tom MacGillivray, University of Edinburgh, Scotland and  Peter van Wijngaarden, the Centre for Eye Research in Australia  — were chosen out of 300 applicants from 30 countries.

Creating a Blood Test to Identify Early-Onset Alzheimer’s

Amoneta is an affiliate of Firalis, a life sciences biotechnology company created by Dr. Huseyin Firat. Since 2014, Amoneta has conducted research and development for ultimately creating a valid blood test that can identify mild cognitive impairment (MCI) and early-onset Alzheimer’s.

The test, called MemoryLINC, is based on finding difficult-to-monitor and characterize lncRNAs (long noncoding ribonucleic acids) in blood panels. These lncRNAs regulate gene expression and diverse biological functions. “It is increasingly recognized that lncRNAs is tightly related to the pathogenesis and prevention and cure of AD (Alzheimer’s Disease),” notes a January 2019 study published in Pathology – Research & Practice.

Fillit says Amoneta has data indicating that certain RNAs are elevated in blood samples of people with Alzheimer’s that are relevant to learning and memory and the disease itself.

The MemoryLINC Project has reached its final clinical validation phase comprised of 800 subjects at 13 European clinical sites in France, Switzerland, Belgium and Turkey. Firat says “the MemoryLINC study is the most important clinical study ever done in this domain.”

Tau-related Research

The ADDF funding for Blennow’s project intends to develop brain-specific, tau-related blood tests to identify and monitor neurodegeneration. Tau is a protein contained in nerve cells. It resides in cerebrospinal fluid in the brain and spinal cord and can be gauged through an invasive and highly uncomfortable spinal tap. The aggregation and collapse of tau into tangles that elevate and spread throughout the brain is symptomatic of Alzheimer’s.

“Measuring tau in blood can be very useful,” Fillit explains. “But the problem is that tau is present in the blood in such low quantities as it relates to [Alzheimer’s] that, so far, we haven’t been able to measure it effectively.” Blennow, however, has discovered how to measure brain-specific tau fragments in blood.

Over the next two years, Blennow’s team will evaluate the presence of different levels of tau in blood samples. Many of these samples will be identified from a Swedish BioFINDER cohort at Lund University, which includes 600 cognitively healthy individuals, 500 patients with subjective cognitive dysfunction or mild cognitive impairment, and 100 patients with Alzheimer’s.

“This is an exploratory project aiming to develop a novel analytical method to establish robust blood biomarkers for tau,” Blennow explains.

Looking Behind the Retina

The other two ADDF-funded awardees are conducting research on imaging techniques and processes that can identify the possible unhealthy accumulation of amyloid plaques behind the retina, which is another symptom of Alzheimer’s. The Alzheimer’s Association’s “2019 Alzheimer’s Disease Facts and Figures” report noted that recent research has shown that the accumulation of amyloid in the brain “were significantly increased starting 22 years before symptoms were expected to develop.”

In addition to focusing on amyloid buildup, MacGillivray’s project is looking closely at vascular changes in the small blood vessels in the back of the retina, both of which can be seen with Optical Coherence Tomography (OCT) machines that are commonly utilized by ophthalmologists.

MacGillivray says the health of small blood vessels is an increasingly recognized component of dementia and Alzheimer’s. “We think we see differences in how wide or how narrow these blood vessels are, and also the number of blood vessels that fill the tissue space,” he notes.

“We are seeing potentially a dying lack of blood vessels or a less optimum range of blood vessels delivering oxygen and nutrients to vascular tissue, and this is then replicated in the brain,” says MacGillivray. “We have a quick and non-invasive way to see if blood vessels are changing [by utilizing relatively inexpensive OCT imagery scans] and degrading in a detrimental way inside the brain without having to go through expensive techniques such as MRIs and PETS.”

‘A Wealth of Information’

“Imagine a world where people who may have memory problems are referred by their primary care doctor to the ophthalmologist around the corner,” Fillit says. The ophthalmologist uses the OCT machine to see if there is an amyloid plaque buildup in the back of the eye. It could tell you whether a person is “cooking” Alzheimer’s or not, notes Fillit.

These same principles apply to Wijngaarden’s project, but with different mechanisms and equipment. This one also deals with looking behind the retina for amyloid plaques, but utilizes a sophisticated camera technology, called hyperspectral imaging. That technology can capture images behind the retina revealing different colors of light that correlate to early-onset Alzheimer’s based on amyloid plaque buildup.

“We can get a wealth of information about the structure of the back of the eye,” Wijngaarden says.

To support his research and ultimately incorporate it into everyday clinical practice, Wijngaarden has developed a low-cost portable camera for hyperspectral imaging of the retina. It’s being tested for use in routine eye exams where the camera will identify amyloid plaque buildup years before a patient might show signs of cognitive decline.

The Future

“What we want to do with the digital accelerator is advance these technologies, measuring things like function, cognition and a whole variety of other variables,” Fillit says.

How long will it take for such innovative technologies to possibly get government approval through clinical trials and validation and ultimately reach patients at their next doctor visit? Amoneta estimates that its blood test could be launched for use in clinics in the U.S. and Europe by 2021. The three other awardees all agree that it should take three to five years for their technologies to possibly become common practice in clinics.

By George Lorenzo

George Lorenzo is an independent writer and publisher from Ann Arbor, Michigan. He writes about aging at OldAnima.

Get by with a little help from Presbyterian SeniorCare Network

November 20, 2019

Get by with a little help from Presbyterian SeniorCare Network
Alzheimer’s support services are available across our Network

Alzheimer's disease is life-changing for both those who are diagnosed and those close to them. Having a helping hand when you need it is key to keeping yourself, and your loved one living with dementia, healthy and happy. When you need a little help or an ear to listen, support services are available.

Support groups

Often times, caregivers say they are looking for support from people who "really understand because they've been there." An Alzheimer's Support Group offers just that – a place for caregivers, family and friends of persons with dementia to meet and develop a support system.

Support groups offer a place to:

  • Exchange information on caregiving problems and solutions
  • Talk through challenges and ways of coping
  • Share feelings, needs and concerns

Presbyterian SeniorCare Network, in affiliation with the Alzheimer’s Association, holds support group meetings in various locations:

We hope you'll join us! 

6 Early Signs of Alzheimer’s Disease

November 4, 2019

Some believe that severe memory loss is a normal part of aging. This is not true. How can you tell the difference between age-related changes and Alzheimer’s disease? Here are six early signs to watch for—and what may just be age-related changes.

  1. Forgetfulness: Is recently learned information, such as today’s weather forecast, more frequently forgotten? Do you or a loved one forget important dates, locations or ask the same questions repeatedly? Age-Related: Sometimes forgetting dates or appointments but remembering them later.
  2. Problem Solving Challenges: Is following a plan or working with numbers more difficult? Is it often harder to make decisions or concentrate on doing familiar, everyday tasks, like driving to work? Age-Related: Making occasional planning or mathematical errors.
  3. Confusion with Time or Place: Do you or a loved one permanently lose track of the date or even forget where you are or how you got there? Age-Related: Losing track of the day of the week but remembering it soon.
  4. Vision Issues: Has judging distance, reading or recognizing color become an issue? Age-Related: Other visual changes, such as those related to cataracts.
  5. Trouble with Words: Is it harder to carry on conversations or find the right words for common topics when speaking or writing? Age-Related: Occasionally searching for the rights words.
  6. Personality Changes: Have you or a loved one started to avoid social activities or hobbies? Do you sometimes feel confused, suspicious, depressed or fearful? Age-Related: Sometimes avoiding social situations or wanting to do things your own way.

SOURCE: Alzheimer's Association

Memory Café: Savoring Special Moments

September 6, 2019

Respect for our elders is a canon we all try to be mindful of, but in today’s society, older adults with Alzheimer’s disease and related dementias often find themselves isolated from mainstream society as they lose their ability to follow “customary” social rules.

This often results in loneliness. Trips outside the home go from fun shopping trips and visits to a favorite restaurant, to only a trip to the doctor to address their disease. The fun seems to disappear and the individual living with the disease, and their caregiver, do not get enough interactions with others who genuinely understand their journey.

The good news is that there are places created specifically for these older adults and their caregivers to connect with other people who are on the same path. Where? At a Memory Café. These Memory Cafés provide important social interaction in an environment that everyone can enjoy.

Coming Together

In 1997, Dutch psychiatrist Bere Miesen introduced the idea of a place where those with Alzheimer’s and related dementias can intermingle and enjoy life in a warm and safe environment. The concept of Memory Cafés spread throughout Europe and were so well received that they eventually made their way to the U.S. In 2008, nationally renowned Alzheimer’s specialist Dr. Jytte Fogh Lokvig opened the first Alzheimer’s Café in Santa Fe, NM.

What is a Memory Café?

Those affected by memory loss and their care partners gather to talk, share and take a much needed break from the disease in an accepting, casual environment. Cafes are made up of a group of like-minded individuals run by compassionate volunteers and/or those who work in the field of dementia care. As of 2013, more than 85 Cafés are helping people enjoy more special moments together throughout the U.S., and that number continues to grow.

Although these Cafes all share the same fundamental goal of providing a fulfilling, enjoyable experience, no two Memory Cafés are exactly alike. That’s because each Café is a grassroots effort organized, operated and maintained by the people who attend them, giving every Cafe its own personality and flavor!

For instance, Memory Cafés offer a variety of fun, stimulating activities, from singing to crafting. Laughter, camaraderie and relaxation are mainstays, all to provide support for both caregivers and those who are cared for.

While each Café is different, they all serve an important role in our society today. Alzheimer’s diagnoses are multiplying annually, according to the Alzheimer’s Association. In the U.S., there are already more than 5.4 million people living with the disease today. While it can severely affect the individual with the diagnosis, memory loss also touches the lives of their caregivers and all of those who love them.

Find out if there is a Memory Café near you!

Presbyterian SeniorCare Network hosts free monthly Memory Cafes in three locations. These Cafes are designed exclusively for individuals with dementia and their caregivers and feature a casual, supportive environment full of conversation and meaningful connections.

Washington area

  • Where: Eat’n Park, 320 Oak Spring Rd, Washington, PA 15301 (reserved room)
  • When: Held on the 3rd Saturday of each month starting May 20
  • Time: 10:00 a.m. – 11:30 a.m.
  • RSVP not required – just pop on in! Coffee and cookies provided.

Oakmont area

  • Where: Somma Pizza, 380 Route 909, Verona, PA 15147 (private area)
  • When: Held on the 2nd Wednesday of each month starting June 14
  • Time: 11:30 a.m. to 1 p.m.
  • RSVP not required – just pop on in! Snacks provided.

Erie area

  • Where: Lincoln Community Center Library, 1255 Manchester Road, Erie, PA 16505
  • When: Held on the 2nd and 4th Tuesday of each month (hosted in collaboration with the Alzheimer's Association)  
  • Time: 10 a.m. to 12 p.m.
  • RSVP not required – just pop on in! Snacks provided

For more information, visit www.SrCare.org/cafe.

This Activities Program Engages and Calms People With Dementia

September 5, 2019

It tailors activities to each individual's abilities and interests
By Melba Newsome

For people with dementia, having nothing to do can contribute to agitation, frustration and a feeling of loss of control and well-being. It is a situation family caregivers often encounter.

Laura Gitlin, distinguished professor and dean of the College of Nursing and Health Professions at Drexel University in Philadelphia, has spent more than three decades developing non-pharmacological behavioral approaches to helping adults with dementia age in place.

“It’s important to assess not just what the person can’t do, but also what they can do.”

Gitlin’s most recent approach, the Tailored Activity Program (TAP), has been shown to help manage critical behavioral symptoms in people with dementia while reducing the caregiver’s burden.

Assessing Abilities and Interests

TAP is an individualized, family-centric program that provides people with dementia activities tailored to their abilities and interests. TAP also includes training for both formal and informal caregivers on how to use activities as part of daily care routines.

“Engagement is an enduring need throughout the disease process, but there hasn’t been a protocol for using an activity-based approach before,” says Gitlin. “TAP is very oriented and focused on how we can improve engagement and meaningful activities at any stage of dementia.”

In randomized clinical trials, TAP improved quality of life for people with dementia by reducing behavioral symptoms, improving their engagement in activities, and providing caregivers with an effective tool. TAP can help with behavior issues, such as agitation, aggressiveness, irritability, restlessness and apathy.

Activities for Different Disease Stages

As dementia patients decline in mental abilities, they often experience challenges in cognitive function that increase negative reactions to their environment.

Many times, family caregivers overestimate or underestimate the capability of their loved ones with dementia. When this happens, they may prescribe activities or communicate in a way that falls below or above their loved ones’ abilities, which can lead to frustration and upset for both parties.

“It’s important to assess not just what the person can’t do but also what they can do, as well as their interests, and set up the environment to support that person,” Gitlin says.

TAP identifies patient interests and evaluates their abilities to perform activities tailored specifically for them. This provides a way for them to positively re-engage with their environment.

The program is delivered or supervised by occupational therapists and can be integrated into home care, or used as part of other caregiver support programs in care settings. The program involves three phases:

  • Identify the capabilities, physical functioning and previous and current interests of the person with dementia
  • Develop “activity prescriptions” for the person’s capabilities, an activity schedule and specifications for setting up and effectively engaging the person in the activity
  • Train caregivers to use these prescribed activities

The activities could be physical — such as balloon toss, chair aerobics or a walk with a companion — crafts or games, but they should be of interest to the person.

“We have a protocol to help determine what could be most meaningful to that person and how to set that up,” explains Gitlin. “We use the same approach regardless of the type of dementia for those who have challenges with executive function when interacting with their physical and social environment.”

Success Stories Using TAP

Gitlin gave an example of how TAP worked well for one woman with dementia who lives in a memory care facility. Because the woman was frequently agitated, it led to some disruption at the facility.

Through a TAP assessment of the woman, the caregivers discovered that she had worked in a laundry business before she developed dementia. Using that knowledge, the caregivers provide the woman with a basket of clean clothes or towels to fold when she becomes agitated. The prescribed activity calms her, puts her at ease and she seems happy.

Karyl Chase is the director of the Senior Companion Program funded by the Corporation of National Community Service in Ogden, Utah. Her agency first employed a version of the TAP program as a way to help their volunteer companions feel more comfortable visiting people with dementia. Once they were trained in the TAP practice, volunteers became more open to taking clients with dementia.

For example, before the training, one of the volunteers spent most of her visits with a dementia patient watching television, during which the patient would often doze off.

After an occupational therapist assessed the patients interests and abilities, the volunteer and patient began playing a dice game together. While this particular activity is not connected to anything the patient did in the past, it shows the value of engagement.

“The client lit up and became more engaged, especially when she won,” explains Chase. “The volunteer noticed how much more enjoyable the visits were for both of them. The client is more alert and active during the visit and their time together goes by fast.”

As the disease progresses, people living with dementia will require different kinds of support. Therefore, they should be reevaluated at each juncture to make sure they’re meaningfully engaged and that the activity fits their current mental status.

Dissemination of the Program

TAP continues to undergo trials in the U.S. and several other countries, including Australia, Brazil, Scotland and Chile. Some countries are further along than others in implementing it for dementia care for their particular health care systems.

Widespread dissemination of TAP throughout the U.S. remains a work in progress. While TAP merits further evaluation to establish efficacy with larger, more diverse populations, it shows a lot of promise as a nonpharmacological approach to manage behavioral symptoms, Gitlin says.

“Our mantra is that we can make life better for the person living with the disease and the family member caring for them,” she says.

By Melba Newsome

Melba Newsome is an award-winning freelance writer with feature credits in many prominent publications including the New York Times, Bloomberg Businessweek, Oprah, Playboy, Reader's Digest, Time, Good Housekeeping and Wired. Melba also is a frequent contributor to such online sites as NBCNews and Healthline.

 
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