Publications and Papers from the International Summit on Intellectual Disability and Dementia

(Glasgow, Scotland – October 13-14, 2016)

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International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plan

Abstract: The WHO has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down syndrome is a risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. The International Summit on Intellectual Disability and Dementia reviewed the inclusion of ID in national plans recommending that inclusion goes beyond just description and relevance of ID. Persons with ID should be included in consultation processes and greater advocacy is required from national organizations on behalf of families, with need for an infrastructure in health and social care that supports quality care in older life.

American Journal of Alzheimer’s Disease & Other Dementias, 2017 June, Vol 32, No 4, pp. 230-237.

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature

Abstract: A working group of the 2016 International Summit on Intellectual Disability and Dementia was charged to examine the terminology used to define and report on dementia in publications related to intellectual disability (ID). A review of related publications showed mixed uses of terms associated with dementia or causative diseases. Like general applications, language related to dementia in ID field often lacked precision and could lead to a misunderstanding of the condition(s) under discussion. Most articles related to ID and dementia reporting clinical or medical research generally provided a definition of dementia or related terms; social care articles tended toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended (a) gaining familiarity with dementia-related diagnostic, condition-specific, and social care terms (as identified in the working group’s report), (b) creating a guidance document on accurately defining and presenting information about individuals or groups referenced, and (c) that in reports on neuropathologies or cognitive decline or impairment, definitions are used and data include subjects’ ages, sex, level of ID, residential situation, basis for dementia diagnosis, presence of Down syndrome (or other risk conditions), years from diagnosis, and if available, scores on objective measures of changing function.

Intellectual and Developmental Disabilities, in press.

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia

Abstract: Adults with intellectual disability are affected by dementia at equivalent and elevated rates; many surviving into advanced age. End-of-life care and support considerations come into play among these individuals when most are in the advanced stage of dementia. The International Summit on Intellectual Disability and Dementia’s report on end-of-life care in advanced dementia provides a synthesis statement which encompasses defining the state of advanced dementia, proposing use of palliative care services (including hospice), and recommending special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit recommended that when aiding adults with advanced dementia, the following be undertaken: integrative efforts between intellectual disability and palliative care providers, specialized training for carers on end-of-life care and supports, and involvement of adults with intellectual disability early on in their advance care planning.

Journal of Applied Research in Intellectual Disability, 2017, DOI: 10.1111/jar.12349

Dying Well with an Intellectual Disability and Dementia

Abstract: As more people with intellectual disabilities live into old age, the prevalence of dementia in this group is increasing. The authors examine the challenges to dementia practice presented by intellectual disability. Expertise in the field of intellectual disability and advanced dementia is rare and our summit offered a series of recommendations including ongoing exchange of experiences and skills across professions, development of tools and scales that facilitate understanding of the progression of dementia, and more equitable access to palliative care and hospice services with increased and timely referral. We also recommended that intellectual disability services increased understanding of the fundamental dementia related needs which complicate end-of-life care.

The Journal of Dementia Care, July/August 2017, Vol 25, No 4, pp 28-31.

Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Post-Diagnostic Support (Aging & Mental Health)

Abstract: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and by among different health and social care oriented organizations, but generally it is recognized that it encompasses a range of supports that are offered to adults once diagnosed with dementia and extending of the condition, until death. An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with who have an intellectual disability with dementia. The Summit proposed a model that encompassed eleven focal areas: post-diagnostic counseling; understanding the needs related to the intellectual disability; specific interventions and treatments; psychological and medical surveillance; early identification of behavior and psychological symptoms; periodic reviews of the dementia care plan; care during advanced dementia; care at end of life; supports for carers and regular evaluation of quality of life linked with reviews of the person’s dementia care plan. It also explored current practices in providing PDS in intellectual disability services. The Summit concluded that although there is limited research evidence for interventions (whether pharmacological or non-pharmacological) for people with intellectual disability and dementia, there are viable resources and guidelines that describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person’s needs as dementia progresses. Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions and the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Aging & Mental Health, in press

Summative Report of the International Summit on Intellectual Disability and Dementia (The Gerontologist)

Abstract: An International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland (October 13-14, 2016) drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (1) human rights and personal resources (applications of the Convention for Rights of People with Disabilities and human rights to societal inclusion, and perspectives of persons with ID), (2) individualized services and clinical supports (advancing and advanced dementia, post-diagnostic supports, community supports and services, dementia-capable care practice, and end-of-life care practices), and (3) advocacy, public impact, family caregiver issues (nomenclature/ terminology, inclusion of persons with ID in national plans, and family caregiver issues). Outcomes included recommendations incorporated into series of publications and topical summary bulletins designed to be international resources, practice guidelines, and the impetus for planning and advocacy with, and on behalf of, people with ID affected by dementia, as well as their families. The general themes of the conceptual areas are discussed and the main recommendations are associated with three primary concerns.

The Gerontologist, in press

Several other papers are under consideration by various journals.

Consensus Statement of the International Summit on Intellectual Disability and Dementia on Valuing the Perspectives of Persons with Intellectual Disability

Abstract: The International Summit on Intellectual Disability and Dementia held in Scotland in 2016 covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This paper reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from Summit attendees, and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Omission of the perspectives of persons with intellectual disability in both policy and practice limits understanding of the experience of dementia. It leads to an overreliance on proxy reporting; something considered by the Summit to be a backwards step in person-centered work. The Summit recognized that the perspectives of persons with intellectual disability must be considered whenever interventions and supports are discussed with planning required at an earlier stage for advance directives that guide medical treatment, and for advice or counselling around relationships, the continuity of social networks, and when securing dementia-friendly housing. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish services and supports for dementia, and (c) peer support efforts that help adults with intellectual disability who are affected by dementia (either directly or indirectly). Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community dwelling arrangements, and (d) wider availability of materials for persons with intellectual disability that would promote understanding of dementia.

Journal of Intellectual Disabilities, in submission

Perspectives on Family Caregiving of Ageing People with Intellectual Disability Affected by Dementia: Commentary from the International Summit on Intellectual Disability and Dementia

Abstract: This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for caregiving among adults with intellectual disability (ID) affected by dementia. Seven opportunistic narratives offer context for relating a support-staging model to interpretations of various situations in which caregivers find themselves. The multi-dimensional model has two fundamental aspects: (1) identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and (2) defining how caregiving is influenced by the stage of dementia. We propose that staging can affect caregiving via different expressions: (1) the ‘diagnostic phase’, (2) the ‘explorative phase’, (3) the ‘adaptive phase’, and (4) the ‘closure phase’. The narratives illustrate both direct and indirect caregiving with a commonality the involvement of the caregivers and their attention to the care needs of an adult with ID. We conclude that the model has utility and shows the variability of caregiving, and that caregivers have various needs and tend to use whatever works and look to outside help only when they need it. Furthermore, a support-staging model can be useful in constructing research, defining family based support services, and setting public policy.

Journal of Gerontological Social Work, in submission

Quality Care for People with Intellectual Disability and Advanced Dementia: Guidance on Service Provision 

Abstract: An International Summit on Intellectual Disability and Dementia held in Glasgow, Scotland, 13-14 October 2016considered both the poor understanding of, and inadequate preparation to address the clinical complications inherent in end stage advanced dementia among people with an intellectual disability. A statement was produced offering guidance on clinical practices to support care optimal care for people with intellectual disability and advanced dementia. The Summit agreed that quality care requires (a) responding to the person’s communication style and needs;(b) alerting carers to signs and symptoms that signal transition into the terminal phase of dementia including the dying phase; (c) offering supportive care focused on comfort, pain and symptom management, the alleviation of emotional distress, with a focus on both quality of life and of dying; (d) genuine inclusion of those who matter to the person (e) care for carers including families, staff and peers; and (f) greater collaboration between intellectual disability services, hospitals, primary care and palliative and hospice care. The Summit agreed that consistent with the ‘Edinburgh Principles’(Wilkinson & Janicki, 2002), advanced dementia care for people with an intellectual disability is best delivered with attention to person-centeredness, relationship-based care and palliative principles.

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.

NATIONAL RESEARCH SUMMIT ON CARE, SERVICES AND SUPPORTS FOR PERSONS WITH DEMENTIA AND THEIR CAREGIVERS: PRE-SUMMIT ACTIVITIES

See Information on the Assistant Secretary for Planning and Evaluation (ASPE) Website

National Task Group on Intellectual Disabilities and Dementia Practices — Caregiving and Program Research on Caregiving of Persons with Intellectual Disability and Dementia 

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.

PRE-SUMMIT PAPERCaregiving and Intellectual and Developmental Disabilities and Dementia: Report of the Pre-Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities
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) to 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) to translate the contributions of these findings to the greater dementia care agenda; and (3) to 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. [PDF Version]

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

Abstract

Background

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

Methods

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.

Results

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.

Conclusions

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.