Resources for Patients and Caregivers

The Ryan Institute places a high importance on engaging both immediate and peripheral communities affected by neurodegenerative diseases. In order to actively help caregivers, family members and those suffering from these diseases, we have provided access below to some of the best resources, both locally and nationally.

Rhode Island

From the RI Division of Elderly Affairs: a source for information, referrals, and help getting started with programs and services for seniors, adults with disabilities, and their caregivers: 401-464-4444 

Alzheimer’s Association of Rhode Island
AARI provides education, personal support and advocacy around key issues of concern to those persons in RI affected by AD and related disorders.
– Community Resource Finder: locate care resources, support groups, and educational services
– TrialMatch: matching volunteers to clinical trials24-hour Helpline: 800-272-3900RI Chapter general phone number: 401-421-0008 

American Parkinson Disease Association Rhode Island Chapter
APDA provides information, education, and support to those affected by Parkinson’s disease and funds scientific research into the causes, prevention, treatments and ultimately the cure.

 ALS Association Rhode Island Chapter
The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against amyotrophic lateral sclerosis. ALSA covers all the bases—research, patient and community services, public education, and advocacy—in providing help and hope to those facing the disease. 

Huntington Disease Society of America Rhode Island Chapter
The Huntington’s Disease Society of America is dedicated to improving the lives of everyone affected by Huntington’s disease. 

RI Division of Elderly Affairs
Pocket manual of elder services: request a free copy at 401-462-4000
Ocean State Center for Independent Living (OSCIL): 401-738-1013 

Rhode Island Geriatric Education Center
Based at the University of Rhode Island, this center trains and educates health care and human service professionals, faculty, students, and caregivers to better meet the physical, functional, and psychological needs of older adults. 

Seven Hills Foundation
This organization offers a continuum of support and services to over 28,000 children and adults with disabilities and life challenges.
– Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders: A Rhode Island-specific resource guide which provides caregivers of individuals with intellectual disabilities an overview of dementia, as well as information about caregiving and support options available in Rhode Island.

National Resources

National Center on Elder Abuse
Individuals with cognitive impairment are at a greater risk of becoming victims of elder abuse. Directed by the U.S. Administration on Aging, NCEA is a resource for policy makers, social service and health care practitioners, the justice system, researchers, advocates, and families. 

National Task Group on Intellectual Disabilities and Dementia Practices
A coalition charged with ensuring that the interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and related dementias–as well as their families and friends–are taken into account as part of the National Plan to Address Alzheimer’s Disease.
A registry and results database of publicly and privately supported clinical studies of human participants conducted around the world.

Photo: “Help Giving,” Bournemouth Borough Council, CC BY-NC 2.0