VIEWS FROM WITHIN: A Lewy Body Video Series Revealing Firsthand Experiences of People Living with Lewy Body Dementia, their Caregivers, and Expert Physicians.
NEW YORK – March 29, 2023 – PRLog — This difficult-to-diagnosis disease affects more than 1.4 million adults and has included celebrities Robin Williams, Tom Seaver, Dina Merrill, and Estelle Getty.
Lewy Body Dementia Resource Center (LBDRC) has released its exclusive video series, VIEWS FROM WITHIN, presenting firsthand experiences of people living with Lewy body dementia (LBD), their caregivers, and expert physicians. Crucial information and personal experiences about little-known multiple symptoms and numerous stages are shared in order to heighten awareness of LBD’s manifestations, and the difficulties families face in getting the correct diagnosis and the ensuing challenging care.
The series, a first of its kind, is presented in 10 separate segments of approximately 20 minutes in length, each with a focus on one specific difficult LBD symptom, such as hallucinations, fluctuations, behavioral issues, and movement issues.
Lewy body dementia is the second most common form of progressive dementia after Alzheimer’s disease and affects more than 1.4 million Americans. It is widely misdiagnosed, as it can mimic Alzheimer’s disease, Parkinson’s disease, or a psychiatric disorder. More people have LBD than Amyotrophic Lateral Sclerosis (ALS), Muscular Dystrophy, Cerebral Palsy, and Frontotemporal Dementia COMBINED. And though more people in the United States have LBD than are HIV positive, LBD is still widely unknown.
“It is amazing that even with these staggering statistics, the phrases “Lewy what?” and “How do you spell that?” are still what we constantly hear,” says Mary Lou Falcone, founder of M.L. Falcone Public Relations, board member of the Lewy Body Dementia Resource Center, and author of I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia (Publication date October 3, 2023, by East End Press).
Dr. Jason Cohen, a member of the LBDRC board and a neurologist and dementia specialist at Montefiore Medical Center and the Albert Einstein College of Medicine in New York, says, “Knowledge is critical for my patients and their families: knowledge that there is a reason for all the different symptoms and knowledge that they are not alone.”
Among those who had LBD are Robin Williams, Tom Seaver, Dina Merrill, and Estelle Getty. Currently, Ted Turner has LBD, along with many others who are undiagnosed or who have not made their diagnoses public.
“This video series has been created to help the public understand the complexities of this neurodegenerative brain disease as well as to guide those searching for a correct diagnosis, those who have this disease, and the loved ones caring for them,” says Norma Loeb, Executive Director of the Lewy Body Dementia Resource Center.
Views From Within: A Lewy Body Video Series can be viewed on Lewy Body Dementia Resource Center’s website at: https://lewybodyresourcecenter.org/views-from-within-a-lewy-body-video-series/
About Lewy Body Dementia Resource Center
The Lewy Body Dementia Resource Center (LBDRC) is a charitable 501(c)(3) non-profit organization based in New York. It was created to provide much-needed resources and personalized assistance to those with Lewy body dementia (LBD) and their families. LBDRC’s mission is to raise crucially needed awareness of LBD through the dissemination of information to healthcare professionals and the general public, offer loving support and services to people with LBD and their care partners, and to promote essential scientific advances.
LBDRC has the only live Helpline for LBD in the United States, available 365 days a year at 516-218-2026 or 833-LBD-LINE. They offer numerous support groups locally and nationally and have over 8,000 supportive resources on their website at: www.lewybodyresourcecenter.org.
To contact Norma Loeb, Executive Director of LBDRC, please call 646-248-9292 or email firstname.lastname@example.org.
The Timeless Trainset: A gift for those with Dementia, helps connecting with people and encourages self expression.
SITTINGBOURNE, U.K. – Nov. 3, 2022 – PRLog — Timeless Presents announces the launch of a Kickstarter Campaign for The Timeless Trainset. Their concept is aimed at helping to fill the gap in current thinking about engagement with those in the mid to late stages of Dementia. As sufferers journey into the later stages of the condition their ability to initiate thoughts around activities they might like to participate in significantly diminishes. This can give the impression that their sense of self has also gone, but this isn’t the case. Unfortunately for millions of Dementia sufferers around the world this can lead to a life of boredom and frustration.
Sharon & Chris Daltrey, of Timeless Presents, saw Sharon’s father, Brian, struggling with these issues as his Alzheimers slowly progressed, so they tried to think of fresh ways to engage with him. “Visits to see Dad at his care home were gradually becoming more difficult” explains Sharon, “Dad’s ability to form new memories had gone and asking him something as simple as what he had for lunch could cause him to become anxious.”
“We had been told that generally memories were lost in reverse order, with the earliest being the last to go” says Chris “an example of this was that Brian could still remember all the words to some nursery rhymes right up to the end.”
“This led us to think that Dad might often be existing in a much younger state to his chronological age. The first thing we bought him was a wooden train set, and although some thought it was a childish thing to do, he absolutely loved it, and that was the most important thing to us. And while we were playing with it together, because he needed help, we found it was a lovely way to connect with him.” said Sharon.
They also observed other benefits in Brian, that he recognised and was interested in the set, and having an idea of what he could do with it seemed to boost his agency and self confidence. Sharon says “now that Dad has gone we are launching Timeless Presents Ltd to help others experience what we, and my Dad did.”
Chris says “The gifting market for mid to late stage dementia is under served and knowing what to get your loved one can be tricky. We’re hoping our innovative gift ideas will go some way towards helping this situation”.
Working with Bigjigs Toys, who co-incidently made Brian’s original set, Sharon and Chris have developed a wooden train set to with a more adult style. Included in the set is a world famous steam locomotive, exclusive, era appropriate carriages contained within a cardboard box designed to resemble a vintage suitcase, complete with labels, that can be used for storage. The inner packaging has been designed to resemble the packaging of train sets from the mid-20th century. The set will also come with a useful hints and tips leaflet to help customers on their way to enjoying more moments together.
Eisai Co., Ltd. and FCNT LIMITED announced today that both companies have entered into a business alliance agreement aiming to support people living with dementia and to prevent dementia, through developing solutions for maintaining brain performance. Both companies will construct an ecosystem with the aim of supporting people living with and preventing dementia (“Dementia Ecosystem”), with integrating Eisai’s wealth of experience and knowledge including drug creation and disease awareness activities as well as Eisai’s solution measures such as digital technology, in the area of dementia, and FCNT’s products such as smartphones designed to offer outstanding usability for the elderly as well as FCNT’s services including “Raku Raku Community” on SNS targeting such smartphone users. With constructing a “Dementia Ecosystem”, both companies aim to contribute to the solution of dementia, which is one of the important social issues in an aging society.
The initiatives planned under the alliance are as follows.
1. The “NouKNOW” will be installed on the “Raku Raku Smartphone” The “Raku Raku Smartphone F-52B” developed and manufactured by FCNT will be equipped with the digital tool for self-assessment of brain performance (brain health) “NouKNOW” (pronounced “NOH-NOH”, non-medical equipment) distributed by Eisai. It is scheduled to be released by NTT DOCOMO, INC. in or after February 2022. This will be the first time that “NouKNOW” is deployed as a function that can be operated on a smartphone. F-52B users will be provided with brain performance checks at no cost by “NouKNOW” up to 4 times a year.
2. Developing solutions for retaining good health and the disease prevention Eisai and FCNT will develop highly convenient solutions for the prevention of dementia, such as identifying future health concerns and predicting risks, with utilizing FCNT’s healthcare information infrastructure to accumulate data available among users, including step count, step speed and heart rate, as well as its management capacity to develop membership services such as “Raku-Raku Community” (2.4 million members as of August 2021. Based on available information by FCNT), an SNS service for seniors with a membership system, in addition to Eisai’s know-how based on various data in the area of dementia. Furthermore, the both companies aim to deploy the new solutions developed based on this alliance for corporate customer, including businesses and regional governments, as a packaged solution that combines products and services owned by not only Eisai and FCNT but also other industries and organizations.
Eisai and FCNT will address and resolve the social issue related to dementia, and promote co-creation of value toward realizing a healthy and long-lived society through contributing to the construction of a “Dementia Ecosystem” by combining the strengths of the both companies.
For more information, visit https://www.eisai.com/news/2021/news202195.html.
Eisai Co., Ltd. and ITO EN, LTD. announced today that both parties have entered into a business alliance agreement concerning the initiatives for supporting people living with and preventing dementia with the aim of realizing a healthy and long-lived society.
Through this alliance, Eisai and ITO EN aim to contribute to the solution of dementia, which is one of the important social issues, with integrating Eisai’s wealth of experience and knowledge in drug creation and disease awareness activities in the area of dementia, as well as Eisai’s solution measures such as digital technology, and ITO EN’s customer network through its community-based sales activities, as well as ITO EN’s problem-solving project related to cognitive function based on abundant research on Matcha (powdered green tea). The specific initiatives planned are as follows.
1. Providing the packaged solution As support for holding seminars on exercise and food related to dementia disease awareness and brain health by local governments for residents, the packaged solution plans to be provided through ITO EN’s 186 business offices nationwide. The packaged solution includes Eisai’s information materials for disease awareness, opportunities for checking brain performance using Eisai’s brain performance (brain-health) self-check tool “NouKNOWTM” (pronounced “NOH-NOH”, non-medical equipment), and ITO EN’s information and services related to Matcha and health.
2. Providing a set of products focusing on brain health A set product which includes the Foods with Function Claims “Oi Ocha OMATCHA POWDER (stick 1.7g x 32)” produced by ITO EN, a prepaid card that can be used for “NouKNOW” and Eisai’s information materials related to brain health will be distributed in Japan.
3. Providing an opportunity to check brain performance at events and campaigns hosted by ITO EN At the events and campaigns hosted by ITO EN, participants will be provided with the information on brain health and the opportunity to check brain performance using “NouKNOW”.
4. Initiation of brain performance check trial internally at ITO EN, towards the future utilization of brain performance checks in corporate health examinations As a trial for the utilization of “NouKNOW” in corporate health examinations, verification of the effects of health consciousness and behavioral changes based on regular brain performance checks among willing ITO EN employees has been ongoing.
Eisai, which aims to eliminate the diverse anxieties of each individual (The People) by constructing a dementia ecosystem through coexisting with other industries and organizations, and ITO EN, which explores the potential of tea and aims to be a health creation company that contributes to the era of 100 years of life, will promote co-creation of value toward the realization of a healthy and long-lived society so that people can lead a happy life in their own way by combining the strengths of both company.