Improving Support for Older Adults with IDD Who Have Dementia and Their Families
Summary of research on improving supports for people with IDD and dementia.
Making My Own Health Care Decisions: A Letter for My Doctor
/in Family member, Nonprofit professionals, Person with a disabilityAll StatesFamily support and future planning, HealthToolkit/by The ArcThe letter can help people explain how they make decisions, explain how they act when they are upset, worried or confused, explain what doctors can do if they are upset, worried, or confused, and tell doctors when they want help making decisions. The letter CAN be used as a supported decision-making agreement. It CANNOT be used as a power of attorney.
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National Disability Rights Network – Member Agencies
/in Advocate, Family member, Person with a disabilityAll StatesAdvocacy, Civil rights, Community-based LTSS, Criminal justice, Education, Employment, Family support and future planning, Health, Health Care, Housing, Medicaid, Social security, Technology, Travel / TransportationOther/by The ArcProtection and advocacy organizations, located in each state and territory, help people with disabilities ensure their basic rights, fight abuse, and advocate for equal access and accountability in health care, education, and employment. This link will connect you with a listing of protection and advocacy organization in each state.
Alzheimer’s Association
/in Advocate, Chapter of The Arc, Family member, Nonprofit professionals, Person with a disability, Service provider / DSPAll StatesFamily support and future planning, HealthOther/by The ArcThe mission of the Alzheimer’s Association is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. The Alzheimer’s Association can connect you to local resources and services available to people with dementia.
NTG FAQ: Some Basic Questions about Adults with Intellectual/Developmental Disabilities Affected by Alzheimer’s Disease or Other Dementias
/in Advocate, Chapter of The Arc, Family member, Nonprofit professionals, Person with a disability, Service provider / DSPAll StatesFamily support and future planning, HealthFact sheet/by The ArcThis document answers commonly asked questions about dementia, how it impacts people with IDD, and the diagnosis and treatment of dementia. This includes questions around medications, programs for people with IDD and dementia, nutrition and dietary issues, and palliative and end of life care.
Living with Dementia
/in Advocate, Chapter of The Arc, Family member, Nonprofit professionals, Person with a disability, Service provider / DSPAll StatesFamily support and future planning, HealthToolkit/by The ArcThis guide helps supporters think of ways that they can help adults with IDD and dementia deal with common challenges that they may face because of dementia, including eating, using the bathroom, walking, and going to bed. This guide was created by Down Syndrome Scotland.
Jenny’s Diary – University of Stirling, Scotland
/in Advocate, Chapter of The Arc, Family member, Nonprofit professionals, Person with a disability, Service provider / DSPAll StatesFamily support and future planning, HealthToolkit/by The ArcThis e-book provides strategies on how to support a person who is living with dementia to work and maintain relationships. It also includes suggestions on how to talk with people with IDD about a dementia diagnosis and how to talk to friends and supporters about this diagnosis.
What is Dementia?
/in Advocate, Chapter of The Arc, Family member, Nonprofit professionals, Person with a disability, Service provider / DSPAll StatesFamily support and future planning, HealthToolkit/by The ArcDown Syndrome Scotland created plain language resources for people with IDD 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 IDD for adults with IDD.
Talking About Dementia
/in Advocate, Chapter of The Arc, Family member, Nonprofit professionals, Person with a disability, Service provider / DSPAll StatesFamily support and future planning, HealthToolkit/by The ArcThis 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.
Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Island
/in Advocate, Chapter of The Arc, Family member, Nonprofit professionals, Person with a disability, Service provider / DSPAll StatesFamily support and future planning, HealthToolkit/by The ArcThis 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.
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The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.
