Family Caregivers Resources
Family Caregiver's Resource Guides

The NTG developed a resource guide for family caregivers, and others, that explains the basics of dementia, caregiving aids, and sources of help.  The original guide was developed for use in Rhode Island, but is applicable in any state.  The Rhode Island guide version is in three sections:

A one-section variant was produced in Nebraska and a national version is under development.  To review the various guides, click here.

A state-specific variant is under development by Catholic Charities Hawaii under an ACL ADPI grant.

Booklet on Alzheimer's Disease and Down Syndrome


This booklet is a resource that answers various caregiving questions and explores challenges when caring for someone with Down syndrome affected by Alzheimer's disease and related dementias. It can help caregivers who are supporting an adult who has mid- or late-stage disease and already bring with them their own expertise and wisdom from the daily practice of caregiving.


Readers may find information that sparks new realizations or connections that can be put to use. For those who have lost a loved one with Down syndrome due to Alzheimer's, this booklet can help shed light on some unanswered questions, provide insight on how to be a support to other caregivers, or help gain further closure on an undoubtedly difficult process.

To order or download a copy from the NDSS.  Copies are also available in Spanish and Dutch.

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This booklet is a resource for anyone wanting information on aging and people with Down syndrome. The booklet:

  • Provides guidance, education and support to families and caregivers of older adults with Down syndrome

  • Prepare families and caregivers of adults with Down syndrome for medical issues commonly encountered in adulthood

  • Empower families and caregivers with accurate information so that they can take positive action over the course of the lifespan of adults with Down syndrome

  • Provides an advocacy framework for medical and psycho-social needs commonly encountered by individuals affected by Down syndrome as they age

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A Guidance Document on Dementia in Persons with Intellectual Disability

This report by the Irish Faculty of Learning Disability Psychiatry provides information on persons with intellectual disability and dementia for their families and offers guidance to persons working in clinical settings. The report provides a seres of recommendations related to the assessment and management of suspected or diagnosed cognitive decline or dementia.

  • Each service for people with intellectual disability should have a plan or access to a plan for recognition and management of dementia in persons with an intellectual disability.

  • Adults with Down syndrome should have baseline function screening beginning at age 35 years and beginning at 50 years for adults with other intellectual disability -- using a battery of carer-rated tests and direct assessment. Repeat assessments should occur every 3–5 years. Where concern arises, repeat tests should occur 6-12 monthly.

  • A multidisciplinary team comprising of a psychiatrist, psychologist, specialist nurse, physician, social worker, occupational therapist, speech and language therapist and physiotherapist should be in place for the care and management of persons with both intellectual disability and dementia.

  • The team or clinicians working together should assess, agree and communicate the diagnosis of dementia.

  • Families and patients should be involved in discussion using accessible information.

  • Services should be comprehensive and allow the individual to age in place.

  • Palliative care should be available.

  • Trainees specializing in psychiatry of intellectual disability should have training in diagnosis and management of dementia.

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For other resources see our Professional Resources page