Rodger That

Dr. Jennifer Bute was a highly qualified senior doctor in a large clinical practice whose patients included those with dementia. Then, 10 years ago, she began to notice symptoms in herself and was diagnosed with dementia. She now lives in a dementia inclusive retirement village in England and passionately educates about the disease through books, radio, TV, and podcasts.

“I want to help other people and don't want them just to think that I am an interesting woman with dementia. I want to help others and make a real difference to them,” Dr Bute explains.

“There is not a one-thing fits-all approach to dementia. We have to be prepared to think more widely than ever before,” Dr. Bute says.

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To find out more about Bobbi and Mike or the inspiration behind this podcast, Rodger That, head over to rodgerthat.show.

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Rodger That is produced by Missing Link—a podcast media company that is dedicated to connecting people to intelligent, engaging and informative content.

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Michelle Papka, Ph.D., has nearly 31 years' combined experience as a researcher and clinician specializing in the field of aging, Alzheimer’s disease, and dementia. She is currently the director and founder of The Cognitive and Research Center of NJ and serves as the principal investigator on over 35 recent clinical trials for Alzheimer’s disease, memory impairment, or mild cognitive impairment.

“It's not funding, money, or other obstacles to finding a cure. It really is people willing to be in a trial, so that's the first thing needed to move the field of dementia research forward,” Dr. Papka says. “We know that people do better when they're in a clinical trial, and it's probably because they are being monitored very, very carefully by a multidisciplinary team of specialists.”

You can sign up for a clinical trial by visiting clinicaltrials.gov. The website is maintained by the U.S. government and lists all the different clinical trials happening across the country.

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Susan is a national speaker, author, linguist, and medical professional passionate about communication, quality of life, and enabling other people’s voices.  She began her career as a translator/interpreter for the Italian Ministry of Defense, later moving to clinical work as a speech language pathologist.  Her firm, SpeakSkill LLC, brings together linguistic, cultural, and medical expertise to provide training and therapy in comprehensive communication skills enhancement.

“People who are dealing with dementia and with cognitive shift are having the same difficulty finding the words to understand what you say to them as they are finding the words to express themselves,” Susan says.

"As clinicians, our job is to open the door and show family members and those who live with their life, altering diagnosis how they can be better communicators and reach the soul of the person. That's our responsibility,” Susan states.

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Matt Perrin is a family caregiver for his mother, who is living with Alzheimer’s, and his father-in-law, who is living with Lewy Body Dementia. His personal experience led him to co-found Ro & Steve, a senior care review site and caregiving blog, acquired by Carely in August 2020.  

He currently serves as Carely’s Head of Growth and lives in southern New Hampshire with his wife, Lindsay, their three daughters, and Lindsay’s father, Steve.

“The process of trying to learn from other people and find the right care for my mom was really difficult. I figured the hard part was getting her to agree and the easy part would be finding the right spot for her,” Matt said. “But it was hard to find support groups and authentic opinions of other people and that was the catalyst for me starting to write my blog.”

“People with all good intentions think they know what it's going to be like and then when they're living with it and it's a complete shock, which is one of the reasons why we do this podcast and the other things we do,” Bobbi says.

 “It's not all sorrow and sadness. I'll cherish these last five years and however many more for the rest of my life because we have all gotten some of the most beautiful moments with them,” Matt says.

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To find out more about Bobbi and Mike or the inspiration behind this podcast, Rodger That, head over to Rodgerthat.show.

Dr. Winston Chiong is an Associate Professor in the University of San Francisco Department of Neurology Memory and Aging Center and is principal investigator of the UCSF Decision Lab. His clinical practice focuses on Alzheimer’s disease, frontotemporal dementia, and other cognitive disorders of aging.

On June 7 the Food and Drug Administration granted conditional approval to the first new Alzheimer’s drug in 18 years Aduhelm, also known as Aducanumab. That approval is broad, making no distinction among the mild, moderate, and advanced stages of the memory-robbing disease and setting no requirements for its diagnosis. Three members of the advisory panel who opposed the drug resigned over the agency's decision. 

“I read about this particular drug and how the approval has been handled. And it's hard for me to trust the FDA going forward. It's frightening that this is being treated with less care than I think it should be,“ Bobbi says.

“I've already fielded a number of questions from family caregivers who I work with asking, ‘Is this drug right for my family member?’ And in every case so far, I said I don't recommend the use of this drug. I actually can't think of a patient of mine who I would recommend taking this drug,” Dr. Chiong says.

The drug will be administered through infusions every four weeks, resulting in a yearly cost of about $56,000 and preliminary estimates suggest patients' copayments for the drug could cost around $11,500 annually.

“This is not what we need to address dementia and Alzheimer's disease in this country or anywhere,” Dr. Chiong explains. “I think those of us in the scientific community believe that to fight a disease as complicated as Alzheimer's disease we're going to need to do the best science we can possibly do. It's going to take a lot, and it's going to take real clear thinking. Being guided by not just hope but actual evidence and data.”

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Rory brings to his practice more than 30 years of elder law, estate planning, asset protection, and special needs planning experience. He not only understands the complex legal issues involved as a professional but also the intense emotional issues as a caregiver. His father, a World War II veteran, suffered from Alzheimer’s disease for 11 years and eventually had to reside in a memory care facility. His mother battled Parkinson’s disease for 14 years.

The movie I Care A Lot is about a crooked legal guardian who drains the savings of her elderly wards and meets her match when a woman she tries to swindle turns out to be more than she first appears.

“The woman who is the object of this exploitation had simply prepared a financial power of attorney on her own, she could have done it online and named her daughter or a friend, that would have precluded the crooked guardian from stepping in and taking away her rights,” Rory explains.

“We like to think we have a lot more time to address this than we actually do,” Bobbi says. “One of the things that I try to teach people is that the time is now, regardless of how old you are, to prepare a power of attorney and share it with your family.”

“When you make a decision to put off this kind of basic planning, you're making a decision. A decision not to act is a decision. And the question isn't, ‘Is your oldest daughter the perfect agent for you?’ Under all considerations, under all circumstances? The real question is, is she a better choice than no one?” Rory says.

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Elisa Bosley is nondenominational Christian chaplain and the founder of SpiritualEldercare.com. She has more than 35 years of ministry experience in both church and parachurch settings. Her deep desire is to make it easy for anyone to provide much-needed spiritual care to loved ones with dementia.

“Familiar faith rituals, words, and songs bring back hopeful, comforting long-term memories. Even those who can no longer speak or seem lost to the fog of dementia respond profoundly to old-time hymns, loving touch, eye contact, and conversation about spiritual things,” Elisa explains.

“One of the most fascinating research pieces that relates to dementia that I've ever seen is that the center of the brain that stores music remains almost completely unaffected by dementia throughout the course of the disease. It's its own little miracle,” Elisa says.

Spiritual Eldercare makes it easy for you to engage elders with dementia with meaningful, interactive spiritual activities.

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To find out more about Bobbi and Mike or the inspiration behind this podcast, Rodger That, head over to rodgerthat.show.

Susan Wehry, MD, is a geriatric psychiatrist with over 35 years of experience as a clinician, educator, public administrator, and long-term care advisor. She is currently Chief of Geriatrics at the University of New England College of Osteopathic Medicine, where she directs AgingME: Maine’s Geriatrics Workforce Enhancement Program (GWEP) and the new TeleHealthy program. 

“Once you get on an anti-psychotic, there is a fear among the caregiver, either staff or family members, that the behavior is going to come back if you stop the drug,” Susan explains. “People never want to take people off of medications, and that is why the regulators have said, ‘Sorry, you have to.’ There is a required gradual dose reduction. It's always anxiety provoking, so it's kind of better never to start if you don't have to because stopping is equally challenging.”

“I would like to have your audience understand something else really important about anti-psychotics and that is their side effects. I think doctors, nurses, and others often miss a very specific side effect of anti-psychotics called Akathisia,” Susan says. “If they think that their loved one might be experiencing Akathisia and are on an anti-psychotic, they should speak with their doctor.”

Akathisia is a movement disorder characterized by a subjective feeling of inner restlessness accompanied by mental distress and an inability to sit still. 

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To find out more about Bobbi and Mike or the inspiration behind this podcast, Rodger That, head over to rodgerthat.show.

Dr. Emilie R. Bartolucci is currently the executive director of Private Duty Home Care at NAHC. She holds a doctorate in educational leadership and organizational development from the University of New England, a master’s in public administration from Villanova University, and she completed her undergraduate degree at the University of Massachusetts, Boston, with a concentration in psychology.

“My personal mission is to make sure that we're doing more to provide care, support, and information to caregivers. You're part of the answer. You're part of the care that's being provided and so valuable because it's that shared decision, that shared sort of larger caregiver group that's happening,” Emile explains.

“The home caregiver knows that someone with dementia can put on a great show of pretending. They're much better when somebody else comes into the home, so having your Association value what the home caregiver lives with and how they can be a part of the team is absolutely wonderful,” Bobbi says.

“Hospice is a lot about patient choice,” Emilie adds. “It's no longer something that's a scary word. People should be looking at it as a way to support one another in those last moments whether it’s one month, two weeks, or even two years.”

“Hospice is really meant to help, to support that family and patient so they can continue living in the place that they feel comfortable and in a place that they can feel surrounded by family or friends,” Emile explains.

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To find out more about Bobbi and Mike or the inspiration behind this podcast, Rodger That, head over to rodgerthat.show.

Brooks Kenny serves as executive director of the Women’s Network at UsAgainstAlzheimer’s. She also directs the organization’s consumer­–facing brain health education and engagement programs as the general manager for BrainGuide, the organization’s newest initiative focusing on bringing state-of-the-art technology to consumers across the country.

Brooks has spent her career applying marketing and business know-how to social causes and has become a national speaker on women’s brain health, Alzheimer’s disease, and caregiving.

“We know the tsunami is coming, and it's time to start a new conversation, which is really what inspired us to develop this new platform called BrainGuide. We want it to serve all communities and empower people whether they're worried about their own brain health, they have concerns for a loved one, or perhaps are caring for someone living with Alzheimer's disease,” Brooks explains. “We wanted people to have a place to go that gives them the next step in their journey because this is such a challenging path and it's a path that is not always well understood. So, we're hopeful that BrainGuide will allow people to get to a place where they are having earlier discussions about Alzheimer’s, getting earlier detection, and correct diagnoses.”

“When we're talking about Alzheimer's disease, we're talking about eventually having it affect sight, hearing, balance, and reasoning. So, the sooner we can get a diagnosis, the sooner we can understand how to deal with the behaviors and have a team in place to help caregivers do what they need to do,” Bobbi adds.

“The problem of brain health is so vast in terms of the lack of detection, diagnosis, the lack of a common narrative, and conversation. We must reduce the stigma of mental health to ensure that we can DETECT DEMENTIA at its earliest point, and I think that it starts with our kids,” Brooks says.

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To find out more about Bobbi and Mike or the inspiration behind this podcast, Rodger That, head over to rodgerthat.show.