A comparative analysis of the prevalence and predictors of chronic pain in older adults with and without intellectual disability in Australia.

Background: There is little research comparatively assessing prevalence of pain between older people either with or without intellectual disability. This paper explores health and social factors associated with chronic pain in these two groups.

Method: A cross-sectional survey was undertaken in New South Wales and Queensland, Australia.

Adapting prescribing criteria for amyloid-targeted antibodies for adults with Down syndrome.

Prior authorization criteria for Federal Drug Administration (FDA) approved immunotherapeutics, among the class of anti-amyloid monoclonal antibodies (mAbs), established by state drug formulary committees, are tailored for adults with late-onset Alzheimer's disease. This overlooks adults with Down syndrome (DS), who often experience dementia at a younger age and with different diagnostic assessment outcomes. This exclusion may deny DS adults access to potential disease-modifying treatments.

Examining older adults with neuroatypical conditions for MCI/dementia: Barriers and recommendations of the Neuroatypical Conditions Expert Consultative Panel.

The Neuroatypical Conditions Expert Consultative Panel composed of numerous clinical and academic experts was convened to examine barriers to the examination of cognitive impairment in adults with a variety of neuroatypical conditions. Neuroatypical conditions affect normative intellectual development and function (such as intellectual disability and intellectual disability with conjoint psychiatric conditions), thought, moods, and cognition (such as severe mental illness), communication functions (such as the autism spectrum and hearing/vision impairments), and brain and motor function (such as cerebral palsy and acquired or traumatic brain injury). The panel concluded that current federal guidance for the assessment of cognitive impairment for mild cognitive impairment (MCI) or dementia does not sufficiently include information as to how to assess such adults.

Perceived health and wellbeing among community-dwelling older Australians with intellectual disability: A comparison with age peers.

Data specifically comparing outcomes for people with and without intellectual disability is limited. This paper reports perceived health and wellbeing of older Australians resident in metropolitan and rural locations in New South Wales and Queensland. Respondents were community-residing individuals with intellectual disability and mainstream age peers [age ≥ 60].

Opportunities, barriers, and recommendations in down syndrome research.

Background: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community.

Mitigating the impact of the 'silos' between the disability and aged-care sectors in Australia: Development of a Best Practice Framework.

Background: Although a 'person-centred focus' is a legislated objective for both aged-care and disability services sectors in Australia, evidence suggests limited translation into systems and practices due to entrenched silos. This paper proposes a Best Practice Framework to mitigate these silos.

Methods: Mixed-methods research comprising key informant interviews with major stakeholders across both sectors; a survey of people with/without intellectual disability aged 60+ years; qualitative in-depth interviews; and survey of health professionals.

Efficacy of Healthy Aging Interventions for Adults With Intellectual and Developmental Disabilities: A Systematic Review.

Background And Objectives: There is a lack of information on intervention strategies employed for health promotion and disease prevention for older adults with intellectual and developmental disabilities (IDDs), who usually experience poorer health compared to their peers without IDDs. We carried out the first systematic review to scrutinize the impact of intrinsic factors (e.g.

Multimorbidity in older people with intellectual disability.

Background: There is paucity of research from Australia about comorbidity in older people with intellectual disability (PwID). This paper examines the burden of chronic diseases and associated sociodemographic correlates in a cohort of PwID aged 60+.

Methods: A cross-sectional survey was used with community-dwelling older PwID in urban/rural regions of two Australian states.

Highlights from the International Summit on Intellectual Disability and Dementia Implications for Brazil.

In October of 2016, an interdisciplinary group representing North and South American and European countries met in Glasgow, Scotland, to scrutinize universal issues regarding adults with intellectual disability (ID) affected by dementia and to produce recommendations and guidelines for public policy, practice, and further research. The aim of this paper is to apprise relevant outcomes of the Summit targeting Brazilian researchers, clinicians, and nongovernmental organizations in the field of ageing and dementia that are committed to developing the Brazilian national dementia plan. Three core themes were covered by the Summit: i) human rights and personal resources, ii) personalized services and caregiver support, and iii) advocacy and public impact.

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

Unlabelled: Purpose of Report: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorized as that stage of dementia progression characterized by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. The questions before the summit were whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population.

Findings: The summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living.

Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities.

Introduction: A specially commissioned working group produced a report on caregiving, intellectual and developmental disabilities (IDDs), and dementia for the National Institutes of Health-located National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.

Methods: Experts in caregiving, dementia, and IDDs examined the current state of research, policy, and practice related to caregiving and supports; identified the similarities and dissimilarities between IDD-related care and services and the general population affected by dementia; and considered how these findings might contribute to the conversation on developing a dementia care research and services development agenda.

Results: Five major areas related to programs and caregiving were assessed: (1) challenges of dementia; (2) family caregiving interventions; (3) supportive care settings; (4) effects of diversity; and (5) bridging service networks of aging and disability.

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia.

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 adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia.

Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability.

The International Summit on Intellectual Disability and Dementia 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 article reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from the Summit attendees and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. 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 supports for dementia and (c) peer support.

The Intersection of Intellectual Disability and Dementia: Report of The International Summit on Intellectual Disability and Dementia.

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: (a) 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), (b) 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 (c) 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 a 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.

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

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. As with dementia research in the non-ID population, language related to dementia in the ID field often lacks precision and could lead to a misunderstanding of the condition(s) under discussion, an increasingly crucial issue given the increased global attention dementia is receiving in that field.

Consensus statement of the international summit on intellectual disability and Dementia related to post-diagnostic support.

Objectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death.

Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life.

Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia.

Background: 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.

Methods: A preliminary report summarizing available literature and making initial recommendations was developed by a workgroup, reviewed by all conference participants and then was finalized by the workgroup.

International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans.

The World Health Organization (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's syndrome is a significant risk factor for early-onset dementia.

Guidelines for dementia-related health advocacy for adults with intellectual disability and dementia: National Task Group on Intellectual Disabilities and Dementia Practices.

Increasing numbers of adults with intellectual disabilities (ID) are living into old age. Though this indicates the positive effects of improved health care and quality of life, the end result is that more adults with ID are and will be experiencing age-related health problems and also exhibiting symptoms of cognitive impairment and decline, some attributable to dementia. Early symptoms of dementia can be subtle and in adults with ID are often masked by their lifelong cognitive impairment, combined with the benign effects of aging.

The National Task Group on Intellectual Disabilities and Dementia Practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities.

Adults with intellectual and developmental disabilities (I/DD) are increasingly presenting to their health care professionals with concerns related to growing older. One particularly challenging clinical question is related to the evaluation of suspected cognitive decline or dementia in older adults with I/DD, a question that most physicians feel ill-prepared to answer. The National Task Group on Intellectual Disabilities and Dementia Practices was convened to help formally address this topic, which remains largely underrepresented in the medical literature.

Neurodevelopmental conditions and aging: report on the Atlanta Study Group Charrette on Neurodevelopmental Conditions and Aging.

This article provides a summary of the proceedings of the Neurodevelopmental Conditions Study Group charrette held on May 21-22, 2007, in Atlanta, Georgia (USA) and underwritten by the Developmental Disabilities Branch of the U.S. Centers for Disease Control and Prevention and the National Institute for Disability and Rehabilitation Research.

Controlled evaluation of support groups for grandparent caregivers of children with developmental disabilities and delays.

There have been growing reports of older women and men caring for their grandchildren and great grandchildren. Many of these grandparents are caring for children with developmental disabilities. To systematically examine the effectiveness of a support group intervention for such grandparents, we recruited 97 grandparents through three agencies in New York City and assigned them to treatment and wait list control conditions.

Older adults with intellectual disability in residential care centers in Israel: health status and service utilization.

To determine their health status, we studied 2,282 Israeli adults with intellectual disability who were at least 40 years of age and lived in residential care. Results showed that age is a significant factor in health status. The frequency of different disease categories (e.