Down Syndrome Scotland created plain language resources for people with I/DD about what dementia is, what dementia is like when you or other people have it, how you can help people who have dementia, and how to ask for help from supporters. This resource was created by adults with I/DD for adults with I/DD.
This guide provides practical tips and strategies for families to use to consider how and when to start talking about dementia. This helps families think about what to say during an initial conversation, how and when this conversation should happen, and how to keep the conversation going.
This guide educates caregivers around how to become a health care advocate and support loved one’s through medical appointments and provide more information around screening, assessment, and diagnosis. This guide also provides general information around how to work with health care providers and tips around providing care if a diagnosis occurs. While some information is specific to Rhode Island, many strategies and resources are generalizable to all families.
This screening tool can be used to help detect changes in adults with intellectual disability who are suspected of or may be showing early signs of mild cognitive impairment or dementia. This form can be completed by family members, staff, or other supporters who know a person well. This screening was created by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). The goal of the NTG is to advocate for services and supports for people with I/DD and their families who are affected by dementia.
Pages 15-16 of this guide provide a series of questions that families members, staff, or other supporters may complete. This can help you and your family keep track of the baseline abilities that a person has and consider what changes have occurred to a person’s ability to do everyday tasks, skills and hobbies, memory, behavior, language and communication ability, personality, and mood from day to day. This guides was created by the National Down Syndrome Society and the National Task Group on Intellectual Disabilities and Dementia Practices.
The NTG produces materials related to dementia, including practice guidelines, screening tools, education and training curricula and workshops, agency and family-based information, and other technical materials – as well provide technical assistance.
The NTG is affiliated with the American Academy of Developmental Medicine and Dentistry and other partners, such as various university centers and national associations and organizations.
NAMI, the National Alliance on Mental Illness, is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness. NAMI also offers a helpline to respond to requests to people in need nationwide.
NADD is a not-for-profit membership association established for professionals, care providers and families to promote understanding of and services for individuals who have developmental disabilities and mental health needs. The mission of NADD is to advance mental wellness for persons with developmental disabilities through the promotion of excellence in mental health care.
NADD is recognized as the world’s leading organization in providing educational services, training materials and conferences. NADD has been influential in the development of appropriate community based policies, programs and opportunities in addressing the mental health needs of persons with ID/D.
Up to 40% of individuals with intellectual and developmental disabilities (I/DD) experience co-occurring mental illness, with some estimates pointing to even higher prevalence rates. Despite its large presence in the community, little is known about how to support families, caregivers, and direct service providers in meeting the needs of individuals experiencing mental illness and I/DD.
To further explore the challenges people with I/DD and mental illness and their families are facing and what support is needed, The Arc’s Center for Future Planning convened five focus groups in Colorado, Wisconsin, and Oregon. The Arc also worked with Boston University to put together a national panel of young adults with co-occurring issues and professionals in the field to explore challenges that young adults with co-occurring issues face when accessing health care services.
Read the brief to learn about the important findings and recommendations, including the need for more training for professionals, systems change activities, new research, and greater public awareness around I/DD and mental health issues.
Special Olympics provides year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy, and participate in a sharing of gifts, skills, and friendship with their families, other Special Olympics athletes, and the community.
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