The demands of dementia
Fighting fear with education and compassion
The Virtual Dementia Tour puts a person in the shoes of someone with dementia. The immersive experience alters one’s senses and is intended to help one better understand the condition and build empathy. Senior Star hosts regularly scheduled Virtual Dementia Tours each month.
Courtesy Senior Star
Mention the words Alzheimer’s or dementia, and fear is often the first reaction. The loss of lifetime memories and decline of mental faculties is something no one wants to experience.
Unfortunately, as many as 5.8 million Americans and as many as 6,500 Tulsans are afflicted with Alzheimer’s disease or another form of dementia, according to the Alzheimer’s Association. Few know that Alzheimer’s is America’s sixth-leading cause of death and kills more than breast and prostate cancers combined, according to the Alzheimer’s Association.
Understanding and empathy are vital to helping those suffering with Alzheimer’s, as well as for aiding stressed-out caregivers. That’s why Tulsa-based Senior Star, which operates two Tulsa residential assisted living facilities for seniors, offers monthly Virtual Dementia Tours.
These tours put you in the shoes of a person with dementia, while helping you better understand their condition and building empathy.
Shondel Bennett, executive director of Senior Star’s Burgundy Place location, oversees 120 residents aged 55 to 103. An estimated 40% of these individuals are in some stage of Alzheimer’s or dementia. Burgundy Place holds a Virtual Dementia Tour the last Tuesday of each month. The entire program lasts about 90 minutes, though the experiential part is brief but intense.
“It’s a fully immersive experience that actually alters your senses that we follow with a debrief so people can talk about it,” Bennett says. “It helps you to understand the behaviors of people with dementia that those of us with healthy cognitive function can find so frustrating.”
Elements of the tour include experiencing hearing and visual deficits along with physical impediments. Participants are given instructions they can’t fully hear or comprehend.
To have your eyes — and your heart — opened to the plight of those with dementia, you can schedule a free Virtual Dementia Tour at either Senior Star location. Call Burgundy Place at 918-299-0953 to reserve a spot at its June 25 demonstration; call 918-250-3631 for a reservation at Woodland Terrace’s June 20 demonstration; or check out Senior Star on Facebook.
Where are my car keys? What’s that cell number again? That name is on the tip of my tongue!
All of us can have moments like these — whether we’re 23 or 83.
However, there’s a big difference between these episodes and actual Alzheimer’s disease or dementia.
“Everyone may experience forgetfulness from time to time,” says Heather Duvall, director of programs for the Oklahoma Chapter of the Alzheimer’s Association, “but Alzheimer’s disease is a brain disorder that really begins to disrupt daily life.”
Alzheimer’s can creep up slowly, with the brain undergoing changes up to 20 years before any significant cognitive impairment manifests. After its symptoms become apparent, the disease might progress for four to 20 years before death occurs.
According to Duvall, some telltale signs someone with Alzheimer’s might have include:
- Forgetting important dates and events
- Asking the same thing repeatedly
- Taking notes and leaving notes as reminders
- Difficulty planning and solving common problems that once were easy
- Confusion and growing inability to complete everyday tasks.
“Early, accurate detection will allow people in the early stages of the disease to start planning and making decisions,” Duvall says. “That way, a patient’s wishes can be carried out and their quality of life can be improved. Caregivers don’t have to guess.”
Broaching the topic with an undiagnosed loved one can be tricky, but it’s critical, Duvall explains. People in the early stages of the disease might be aware of their difficulties and are often feeling anxious and fearful, and this can lead to denial. Be gentle, she says.
“You might start a conversation like, ‘Mom, I feel like you’ve been more forgetful lately. Do you feel like you are?’ And then you might point out some of the specific things you see going on.”
After having that conversation, take your loved one to a doctor for a cognitive assessment. If a diagnosis of Alzheimer’s or dementia is made, get in touch with the Alzheimer’s Association.
“It’s a devastating diagnosis, but we can help provide you with the support and resources to help you navigate through the journey of this disease,” she adds.
You can learn more from alz.org and its 24-hour helpline, 1-800-272-3900.
The unsung heroes
Megan Linn describes her mother’s descent into the abyss of Alzheimer’s disease as a nightmare. Her mother, Connie, 72, was once a vibrant, outspoken, tenacious and independent woman, who made her career as a college professor.
About five years ago, the family began to notice significant changes, though upon reflection, subtle signs of the disease had been there for a decade prior. By the time of Connie’s diagnosis, she was in the full-blown stages of Alzheimer’s and needed 24-hour care.
“It’s a nightmare beyond what you can imagine,” Linn says. “You mourn for what you’ve lost and what you won’t have.”
Suddenly, the family, and particularly her father, was thrust into a role they never anticipated.
Ironically, perhaps, it is the caregivers who are too often forgotten in the story of Alzheimer’s disease and dementia.
It is the wives, the husbands, children and friends who end up caring for the patient, bearing a huge burden — at great personal and even professional cost. Jobs can be lost, careers derailed and blissful, relaxed retirement years might turn into a long, heartbreaking slog.
They are the unsung heroes in the battle against Alzheimer’s. According to the Alzheimer’s Association, more than 16 million Americans are providing unpaid care to people with Alzheimer’s or other dementias at an estimated value of $234 billion. In Oklahoma, 224,000-plus are serving as unpaid caregivers at an estimated value of $3.2 billion. Typically, it takes three people to provide care for just one person with Alzheimer’s.
Susan Dornblaser, a volunteer trainer who educates the public about Alzheimer’s, struggled as a caregiver for her mother, who passed away from the disease in 2010. Her father, also a primary caregiver, died 10 weeks prior to his wife of vascular dementia brought on by the stress of caring for his ailing wife.
Frequently, caregivers end up overlooked and marginalized as caring for a loved one takes over their lives, she says. In her case, she had to end a 30-year practice as a communications consultant.
“I closed the doors of my PR practice,” she says. “People don’t think about how caregiving impacts the careers of people. We need to educate employers so they can understand.”
Employees who find themselves in that situation are far more likely to be tardy, leave work early, request leaves of absence, turn down promotions and even quit their jobs.
Linn says that there have been silver linings. She credits the care her mother now receives at Inverness Village retirement center, as well as the support the family continues to get through the Alzheimer’s Association, which she calls a “lifesaver.”
“Don’t be afraid to let other people in on your journey,” she says. “Our family was pretty private, and we didn’t want to burden anyone, but accepting help from others has been incredible. Strangers have now become our extended family.
“To help my mom, we had to have people helping us,” she says. “It has saved us.”
On the horizon
Alzheimer’s has no cure, but there are promising therapies on the horizon for sufferers.
Although most existing trials focus on earlier stages of the disease, one new therapy — if successful — will focus on improving quality of life for those already diagnosed with and experiencing the effects of Alzheimer’s.
Called troriluzole, the drug is undergoing clinical trials at 40 sites across the U.S., including in Tulsa through Tulsa Clinical Research.
“This is for people experiencing mild to moderate symptoms of Alzheimer’s,” says Christy Lisenbee, operations manager and certified clinical research coordinator for Tulsa Clinical Research. “There have not been many studies or therapies for this group, which is already using available treatments.”
The study, formally called T2ProtectAD, is open for those age 50-85 with an Alzheimer’s diagnosis. It is a 48-week trial that requires 10 clinical visits, the first one being a clinical eligibility assessment. There is no cost to the patient for participating.
Biohaven, a New Haven, Connecticut-based pharmaceutical company, has developed troriuzole, which it hopes will protect against and slow down memory loss and even improve memory and thinking problems. The drug aims to regulate a vital brain chemical called glutamate.
“What troriuzole does is it makes glutamate levels in the brain normal, which allows nerve cells to communicate more effectively with each other,” says Dr. Irfan Qureshi, executive director of neurology at Biohaven. “It is a promising investigational treatment for neurodegenerative diseases, including Alzheimer’s.”
Qureshi warns this is not a cure, but animal trials showed significant promise. They are hoping it shows the same impact in humans.
If you are interested in participating in the study, call Tulsa Clinical Research at 918-743-2349, ext. 106, or visit t2protectad.org.
On Aug. 6, Montereau will host “Know the 10 Signs: Early Detection Matters” in conjunction with the Alzheimer’s Association. The presentation will include how to identify the 10 warning signs, hearing from people with the disease, and how to recognize the signs in yourself and others. More information at montereau.net.
What is Alzheimer’s?
“Alzheimer’s is the most common form of dementia and causes actual physical changes to the brain,” says Jessica Vagin, Montereau memory care program manager. “The brain becomes smaller and shriveled. Alzheimer’s causes problems with thinking abilities, behaviors and an individual’s memory. This is a progressive disease that becomes severe enough to affect daily life, and it is terminal. Alzheimer’s accounts for 60-80% of all dementia cases.”
Are there different forms of dementia?
Dementia is an umbrella term used to describe the loss of memory and other thinking skills, Vagin says. There are 200-plus forms of dementia.
Tulsa named Dementia Friendly City
With baby boomers arriving en masse into their golden years and joining millions of Americans already there, Alzheimer’s and dementia awareness has never been more important.
That’s why Tulsa became a Dementia Friendly City two years ago as part of the Dementia Friendly America Network. Being a Dementia Friendly City means city government departments, first responders and other civic organizations ranging from churches and nonprofits to businesses are trained or are receiving training about Alzheimer’s/dementia, their impacts and how to deal with these conditions.
“The purpose of the training is to change social attitudes and stigmas so the public knows how to engage those with cognitive impairment,” says
Susan Dornblaser, a volunteer trainer with Dementia Friendly Tulsa. “We want people with dementia to stay engaged in the community as long as possible.”
The free training is open to any interested group. To schedule a training, call 918-596-7411 from 8 a.m.-5 p.m., Monday-Friday.