Rochester — February 28, 2022 — The Alzheimer’s Association Rochester Finger Lakes Chapter is pleased to announce that it has received a $500,000 grant from the Golisano Foundation for Phase II of its IDD (Intellectual and Developmental Disabilities) Health Initiative. In addition to Rochester, the initiative extends to the Alzheimer’s Association’s Western New York Chapter in Buffalo and the South West Florida Chapter in Clearwater, Fla.
“People with intellectual and developmental disabilities (IDD) are experiencing an unprecedented increase in longevity and, consequently, facing more age-related challenges, including the development of dementia,” said Teresa Galbier, executive director of the Alzheimer’s Association Rochester Finger Lakes Chapter. “There are limited training and health system supports for professional and family caregivers of people with IDD as they develop and live with dementia. This generous funding will help address that gap.”
For adults with Down syndrome, the lifetime risk of Alzheimer’s disease is 90%, and it is the leading cause of death. By age 60, at least 50% of people with Down syndrome already have clinical evidence of dementia.
The grant will be distributed over two years, with $300,000 in 2022 and $200,000 in 2023, and will enable the Alzheimer’s Association to hire additional staff to oversee the program in each of the three regions – Rochester, Buffalo, and Southwest Florida. The program will use a comprehensive approach that targets a wide range of individuals and organizations influencing the diagnosis, care, and support of individuals with IDD living with dementia.
The program is expected to have the following outcomes:
● 21 Community Educators trained
● 225 caregivers who receive training from Community Educators
● 300 professional caregivers trained
● 675 people with IDD and dementia receive support
Ann Costello, Executive Director of the Golisano Foundation said, “The Rochester Finger Lakes Chapter has a proven track record of successfully training providers who serve individuals with intellectual disabilities and dementia. Their expertise along with the proposed expansion of training will significantly increase the number of qualified professionals, family caregivers, and volunteers available to provide the best possible care for the growing number of people with intellectual and developmental disabilities who need help to improve their quality of life.”
“The Rochester Finger Lakes Chapter has supported people with IDD who have dementia for more than 15 years,” Galbier said. From 2019 to 2021, in partnership with the Golisano Foundation, the Alzheimer’s Association developed and piloted a model for building a dementia-capable IDD workforce by preparing 15 individuals from four IDD agencies within the Buffalo and Rochester areas to train and support 230 of their colleagues.
"We’re grateful the Golisano Foundation recognizes the value of funding this program and we're proud to continue our efforts to provide support for healthcare professionals and caregivers of individuals with IDD," said Alzheimer’s Association WNY Chapter Executive Director Jill Horner. “The Chapter looks forward to continuing to work with our respected partners in meeting the crucial need for services in the IDD population."
From pre- to post-training during Phase 1, the percentage of staff reporting confidence in their ability to handle situations increased most around the ability to recognize dementia signs (from 35% to 86%), adapt living spaces (from 45% to 93%), respond to fears and behavioral reactions (from 49% to 93%) and communicate effectively with people living with dementia (from 53% to 94%).
James Branciforte, President and CEO of Lifetime Assistance says, “People with developmental disabilities are living longer, requiring a unique level of specialized services for those impacted by dementia. Through Lifetime’s participation in the Golisano Foundation pilot with the Alzheimer’s Association, our teams have broadened their knowledge and skills in assuring dementia care best practices. We are pleased to partner with the Alzheimer's Association in achieving our shared vision of supporting people with IDD to live long and happy lives.”
“People Inc. was thrilled to be part of the original pilot. We have been able to provide our Direct Support Professionals and Behavioral Health staff with enhanced skills to support individuals with age-related challenges,” said Rhonda Frederick, president and CEO of Buffalo-based People Inc., a non-profit health and human services agency. “The results have been impressive and we can’t wait to be part of this next phase. We are so grateful to the Golisano Foundation for its generosity and to the Alzheimer’s Association for its expertise and support.”
“We are honored that the Golisano Foundation – which partnered with us on Phase I in Western New York and Rochester Finger Lakes – trusts us to lead this important program,” Galbier said. “This expansion into Florida will enable us to develop the program in a way that can be replicated across the country.”
"In Florida, we have the second-highest prevalence of Alzheimer's disease in the nation," noted Angela McAuley, executive director of the Alzheimer's Association Florida Gulf Coast Chapter. "Many of those individuals are also living with IDD, so we are thrilled that our constituents will now be able to benefit from this important program."
The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. It is the largest nonprofit funder of Alzheimer’s research. The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Visit alz.org/rochesterny or call 1-800-272-3900.
The Golisano Foundation is one of the largest private foundations in the U.S. dedicated to making the world a better place for people with intellectual and developmental disabilities (IDD). The Foundation is devoted to opening doors to opportunity, changing negative perceptions and stereotypes, and forging unprecedented partnerships to ensure individuals with intellectual and developmental disabilities have pathways to personal dignity, independence, and the best possible expression of their abilities and talents throughout their lifetimes. Founded in 1985 by Tom Golisano—entrepreneur, philanthropist, civic leader, and founder of Paychex, Inc. —the Foundation “imagines the possibilities,” advocating for families, fighting for their dignity, and giving people with IDD the opportunity to thrive in their communities. With more than $60 million in gross assets, it awards about $3 million annually to non-profit organizations in Western New York and Southwest Florida.
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For more information:
Velvet Spicer, Communications Manager
Alzheimer’s Association
585.737.3234
vespicer@alz.org
alz.org/rochesterny
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.