Caregiving and IDD and Dementia: Report of the Pre-Summit Workgroup on Caregiving and IDD

This report summarizes the findings and recommendations from a pre-summit activity for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.  The report was developed by a working group of experts in caregiving, dementia, and intellectual and developmental disabilities (IDD) and organized by the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) in partnership with the Rehabilitation Research and Training Center in Developmental Disabilities and Health at the University of Illinois at Chicago and the Alzheimer’s Association.  The purpose was threefold:
  1. assess the current state of research, policy, and practice, and develop recommendations related to caregiving supports for older adults with intellectual and developmental disabilities;
  2. translate the contributions of these findings to the greater dementia care agenda; and
  3. promote inclusion of issues particularly relevant to intellectual disability and dementia concerns as part of the Summit platform.


The Report examined the foundational similarities and differences in focal areas affecting people with dementia, both with and absent IDD.  Considered were five major areas related to care and caregiving:
(1) family caregiving interventions;
(2) supportive care settings;
(3) effects of diversity;
(4) screening and early detection; and,
(5) bridging service networks.
Recommendations are offered in each of these areas, including how funding and actions might be undertaken and by which federal or non-federal organizations.
Prof. Tamar Heller, RRTCDD Director and chair of this ad hoc working group will be speaking at the Summit, and conveying the workgroup’s recommendations.

Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders

Source: The National Task Group on Intellectual Disabilities and Dementia Practices

Citation: Seven Hills Rhode Island. (2017). Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders. Woonsocket, Rhode Island: Seven Hills Rhode Island and the National Task Group on Intellectual Disabilities and Dementia Practices. For print copies contact: Seven Hills Rhode Island, 30 Cumberland Street, Woonsocket, RI 02895.

Download Intellectual Disabilities and Dementia A Caregivers Resource Guide for Rhode Islanders

Intellectual Disability and Dementia: A Caregiver’s Resource Guide for Rhode Islanders

This guide, while written for families of adults with intellectual disability, is a useful tool for anyone who provides care. Caregivers play an important role in the overall wellness of individuals they support. Our goal is to provide information that will be helpful to anyone who cares for adults with intellectual disability.

As individuals with an intellectual or other developmental disability age, you may see changes that are confusing and upsetting. It can be frightening not knowing what is happening to them or how to best support him or her.

This guide was designed to provide caregivers of individuals with an intellectual disability an overview of dementia, as well as provide information about caregiving and support options available in Rhode Island.

A note about Alzheimer’s disease and dementia. Alzheimer’s is a disease of the brain which causes a person to lose his or her memory and ability to function. Those losses are termed dementia. Alzheimer’s is not the only cause of dementia – see the glossary at the end for the different causes.

We hope that you will find this guide to be a foundation for your knowledge as we have included some commonly used words and phrases, a basic overview of the disease process, some tips for caregiving, as well as local Rhode Island and national organizations that offer training and services. In no way should this guide take the place of consulting with your loved one’s healthcare provider.

The guide is divided into sections, each with a different focus to aid you on your caregiving journey. You do not need to read this guide from cover to cover, rather it has been written so that you can find information you need related to the questions or concerns you may have at any time during an individual’s journey through dementia.

Breaking Stereotypes: Spotlight on Male Family Caregivers

In the United States, family caregivers are the backbone for the delivery of supportive services for individuals with a chronic, disabling, or serious health condition. 40 percent of family caregivers of adults are men—which equates to 16 million male family caregivers in the United States.

Source: Breaking Stereotypes: Spotlight on Male Family Caregivers

They identify, arrange, and coordinate services and supports; provide emotional support; accompany their family member or friend to health provider visits; administer medications; assist with personal care (such as bathing and dressing); pay bills and deal with health insurance; and perform other vital activities to help individuals remain in their homes and communities for as long as possible.

Full Report

Although the “typical” family caregiver is a 49-year-old woman who takes care of a relative, caregivers on the whole are becoming as diverse as the American population. Men, a group traditionally not recognized for performing caregiving tasks, are rising to the challenge. These husbands, brothers, sons, sons-in-law, partners, friends, and neighbors are joining, either by choice or necessity, the army of family caregivers providing care across the country. However, there is a paucity of research that has exclusively examined the impact of caregiving within and among diverse male family caregivers. Prior studies were predominately qualitative in nature and several had methodological challenges, including small sample sizes that limited the generalizability of the findings.

Using data from the Caregiving in the U.S. 2015 survey, this Spotlight highlights male family caregivers, providing current information about the experiences and challenges facing them today.

Related Links: 

Caregiving in the United States 2015

Home Alone

Research Brief: Family Caregiver Support for People with IDD

The 2010 Family and Individual Needs for Disability Support Survey (FINDS) conducted by The Arc (2011) shows that family caregivers play a critical role in providing supports to individuals with intellectual and developmental disabilities (IDD).

Source: Research Brief: Family Caregiver Support for People with IDD | Family Support Research and Training Center

This databrief describes the kinds and amount of supports provided by families to individuals with IDD living in their family home. Caregivers provided an average of nine different kinds of support and more than half of all caregivers reported providing these supports more than 40 hours per week. More than half of caregivers in this survey reported being aged 50 or older, highlighting the critical need to start planning for a future when aging caregivers are no longer able to continue providing significant amounts of support for their family members.Click this link to download the data brief.


Physical and psychological health of family carers co-residing with an adult relative with an ID – Grey

Source: Physical and psychological health of family carers co-residing with an adult relative with an intellectual disability – Grey – 2017 – Journal of Applied Research in Intellectual Disabilities – Wiley Online Library



Providing long-term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well-being.


Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined.


Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio-economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring.


Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population-based, longitudinal research is needed.


NTG Caregivers Newsletter on ID and Dementia Practices (Volume 1, Issue 1)

Welcome to the first issue of the NTG Caregiver News (Volume 1 Issue 1) March 2017. This publication has grown out of the NTG’s Family Caregiver Online Support Group for those who are caring for, or have cared for, loved ones with Alzheimer’s and intellectual disabilities.

Once each month, we open the airwaves to share what is happening in our lives and with our loved ones. To keep the group effective for support to the families, we limit participation to those who have loved ones with dementia or are direct caregivers. As we identify topics we would like more information about, we invite specific professionals to lead our conversation. Upcoming issues of this newsletter will include some of the highlights of those conversations. In addition, watch for links to helpful resources.

This issue includes some general information on intellectual and developmental disabilities and dementias, as well as an introduction to the National Task Group (NTG) on Intellectual Disabilities and Dementia Practices. We encourage you to visit the NTG website for more information on their activities and to become a member.

We have learned through interactions with families in the online support group that there are lots of questions, many uncertainties, multiple feelings of loss, limited resources in local communities, and great recognition that love is most important for all of us.

Please do circulate NTG Caregiver News (Volume 1 Issue 1) March 2017 among your colleagues and to any family caregiver groups with which you have contact.