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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]. Measures included SF12; Cummings well-being scales; DSSI; Adverse Life Events; and financial hardship status. The sample was composed of 391 adults with intellectual disability and 920 age peers. Adults with intellectual disability were significantly more likely to note adverse life events, worse mental health, and lower levels of social support, but reported higher mean wellbeing scores and had higher scores for physical health. Results indicated higher likelihood of adults with intellectual disability reporting comparative disadvantage across multiple key areas when compared to age peers.

BackgroundRecent 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.ObjectiveThe National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan.MethodsNDSS and LuMind IDSC assembled over 50 experts across multiple disciplines and organized them in eleven working groups focused on specific issues for people with DS.ResultsThis review article summarizes the research gaps and recommendations that have the potential to improve the health and quality of life for people with DS within the next decade.ConclusionsThis review highlights many of the scientific gaps that exist in DS research. Based on these gaps, a multidisciplinary group of DS experts has made recommendations to advance DS research. This paper may also aid policymakers and the DS community to build a comprehensive national DS research strategy.

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. Results: There is an urgent need to develop inter-sectoral 'integrated care systems'. Key components include choice in accommodation; regular assessment of health and well-being indicators; development and adoption of nationally consistent policies/standards across integrated aged- and disability-care sectors; improved strategies for workforce planning; and upskilling of existing staff including place-based collaboration. Conclusions: An integrated service model requires collaboration on broader public policy instruments, appropriate planning and resourcing. A strategic shift is required to ensure better quality person-centred support systems.

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. Recruitment was undertaken via a multi-prong approach and each subject (N = 391; 236 urban/155 rural) personally interviewed. Results: Findings show older PwID experience considerable multimorbidity (X = 3.8; 53.5% had 2-6 conditions). Conditions included arthritis (40%), diabetes (26%), cardiovascular diseases (23.6%), asthma (16.1%), carcinomas (10.0%) and mental health disorders (34.5%). Conclusions: There was significant multimorbidity in older PwID, with evolution of life trajectories of select conditions associated with socioeconomic disadvantage and heath facility access barriers. Greater scrutiny of progressive health debilitation leading into older age and increased engagement by healthcare systems is required earlier in the lives of PwID.

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. 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) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia.

Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability. Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses. Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation. Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.

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. Results: The International Summit on Intellectual Disability and Dementia produced a report on End of life care in advanced dementia that provides a synthesis statement which encompasses defining the state of advanced dementia, proposes use of palliative care services (including hospice) and recommends special efforts for enabling advanced directives and advance care planning prior to the extensive progression of dementia. The Summit further 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. Conclusions: The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia. [This article was also written by the Working Group of the International Summit on Intellectual Disability and Dementia.]

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. Most articles related to ID and dementia reporting clinical or medical research generally provide a structured definition of dementia or related terms; social care articles tend toward term use without definition. Toward terminology standardization within studies/reports on dementia and ID, the Summit recommended that a consistent approach is taken that ensures (a) growing 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) using definitions and data, such as 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, in reports on neuropathologies or cognitive decline or impairment.

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. A cross-sectional survey was undertaken in New South Wales and Queensland, Australia. Inclusion criteria were adults either with or without intellectual disability, aged 60 years and older, and currently living in community-settings. Univariate and multivariable analyses were undertaken on a sample of 391 adults with intellectual disability and 920 adults without intellectual disability. Key findings included higher prevalence of pain in the intellectual disability group, along with higher rates of osteoarthritis, falls, oral health problems, and mood disorders. Mitigating risk factors for conditions that cause chronic pain in older adults is crucial. As longevity increases, the healthcare sector needs to prioritise chronic pain management for people with intellectual disabilities through appropriate treatment strategies. [ABSTRACT FROM AUTHOR]

Background: In this study, we evaluated the feasibility of using the German-language version of a recently developed screening tool for dementia for persons with intellectual disability (ID): the National Task Group -- Early Detection Screen for Dementia (NTG-EDSD). Method: Some 221 paid carers of ageing persons with ID were asked to use the NTG-EDSD and report back on its utility and on 4 feasibility dimensions, and to provide detailed feedback on aspects deemed critical or missing. Results: All feasibility dimensions were rated good to very good, and 80% of respondents found the NTG-EDSD useful or very useful for the early detection of dementia. This highlights a high acceptability of this instrument by the main target group. Conclusions: The positive feasibility evaluation of the NTG-EDSD indicates the usability and adequacy of this instrument for application of early detection of dementia in persons with ID.

Background: Access to support services in rural areas is known to be problematic both in Australia, and in other countries around the world, but the majority of research on the population of people ageing with learning disability has so far focussed on metropolitan residents. The authors report about select aspects of the lived experience of older adults with learning disability resident in rural locations in two states of Australia. Materials and Methods: This pilot project examined data drawn from 34 semi-structured interviews conducted with 17 older adults and 17 carers. Responses were analysed for thematic areas. Results: It was observed that the capacity of certain rural areas to support meaningful choice-making was limited due to constraints of access to key services, including community-based aged care, generic and specialist health services, and both supported disability and aged-care residential options. Responses indicated that those living in both small- and medium-sized congregate care settings (such as group homes and residential aged-care facilities) had more limited choices and only partial (if any) control over their living situation. Conclusion: An understanding of the needs of older adults with learning disability resident in rural areas is important to ensure that both aged-care and disability support structures are built on individuals' needs.

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]. Measures included SF12; Cummings well-being scales; DSSI; Adverse Life Events; and financial hardship status. The sample was composed of 391 adults with intellectual disability and 920 age peers. Adults with intellectual disability were significantly more likely to note adverse life events, worse mental health, and lower levels of social support, but reported higher mean wellbeing scores and had higher scores for physical health. Results indicated higher likelihood of adults with intellectual disability reporting comparative disadvantage across multiple key areas when compared to age peers. [ABSTRACT FROM AUTHOR]

Research indicates that adults with intellectual disabilities (ID) have high rates of overweight status/obesity (OSO). OSO is associated with several important risk factors for coronary heart disease (CHD). This study focused on assessing whether such risk factors are being identified in adults with ID who are receiving their healthcare in community settings, and comparing the rates of risk factors and appropriate preventive interventions with a sample of adults without ID from the same community. OSO rates and CHD risk factors were ascertained in a sample of 100 adults with ID from a medical chart review. All participants were residing in group homes in Monroe County, New York. These rates were compared with age-peer rates in the local general population. In addition, physician practices regarding weight and CHD risk factors were compared in the two study groups. As expected, rates of OSO were high in both groups. However, rates of obesity were proportionally higher in adults with ID. Hypertension rates were comparable in the two groups, although rates of dyslipidemia (high cholesterol) were higher in adults with ID. Medication prescription rates for hypertension and dyslipidemia were equivalent in both groups. There were more dietary recommendations and fewer exercise recommendations prescribed for adults with ID. These findings confirm that OSO rates are high in both adults with ID and those in the general population in one geographic area. High rates of CHD risk factors pose risks for premature mortality and morbidity in both groups. Because of factors that are not clear, but that merit further study, physicians may make different recommendations for diet and exercise in persons with ID compared with persons in the general population.

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.g., cardiovascular disease, cancer, and sensory impairments) increased significantly with age for both genders. Cardiovascular disease in this population was less prevalent when compared to the general population, suggesting that underdiagnosis of some diseases or conditions may be prevalent in this population. The patterns of organ-system morbidity with increasing age were similar to those in other studies conducted in several countries, suggesting that health status and outcomes could be independent of cultural factors.

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. Significant reductions in symptoms of depression and increases in sense of empowerment and caregiving mastery were found for the treatment group. Similar effects were found for the control subjects when they later received the intervention.

This study evaluated vision and hearing impairment in 45,500 adults (age 35 and older) with an intellectual disability. Visual impairment or blindness were found in 25 percent of the total sample, impaired hearing or deafness in 22 percent. Breakdown by age group indicates increasing frequency of impairment with advancing age. Implications for interpersonal communication and adaptive functioning are drawn. (DB)

Examines the uniqueness of the caregiving experiences of specific cultural groups. Results, based on focus group meetings with African American, Chinese American, Haitian American, Hispanic/Latino American, Korean American, and select Native American communities, revealed differences in perceptions of disability, family structure, care givers, decision making, and other factors. (RJM)

The overall goal of the "2007 State of the Science Symposium on Aging with Developmental Disabilities: Charting Lifespan Trajectories and Supportive Environments for Healthy Community Living" (held in Atlanta, Georgia, U.S.A.) was to increase the understanding and definition of how to improve the health, psychosocial well-being, and community participation of older adults with intellectual and developmental disabilities. The symposium consisted of four main tracks (neurodevelopmental conditions; health care services, health promotion needs, and health literacy; family support and intergenerational caregiving; and environmental barriers and supports to community living). The symposium's participants recommended a greater focus on a research agenda that would serve to increase the knowledge on the lifespan trajectory for individuals with intellectual and developmental disabilities and on identifying methods for developing and assessing effectiveness of practices and policies for individuals with developmental disabilities, their families, and their service providers.

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. cognitive, mental, and physical health) on the health status of older adults with IDDs. Research Design and Methods To assess the efficacy of such interventions, we examined 23 articles including prospective "healthy aging" interventions designed for adults with IDDs. Searches were carried out in the databases Web of Science, Scielo, and PsycINFO in April 2020. Articles were organized in thematic areas: (a) physical activity and health nutrition (n = 10), (b) health education and health screening (n = 6), (c) social inclusion and community participation (n = 3), and (d) multicomponents (n = 4). Except for 5 randomized controlled trial studies, the designs were mainly nonrandomized, involving small sample sizes (N range = 8–379 participants), and lacking follow-up. Results The studies included 2,398 men and women with IDDs (ranging in age from 18 to 86 years [mean age: 44.3 years]). Overall, intervention outcomes were mostly positive; however, some negative outcomes were reported. Discussion and Implications In brief, healthy aging interventions for people with IDDs remain scarce, incipient, and sporadic. We recommend that more attention needs to be given to active health promotion with people with IDDs as a program practice among organizations and as a focal public policy among governments. [ABSTRACT FROM AUTHOR]

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. In addition, it concluded that adults with these conditions (1) challenge clinicians when attempting to discern current behavior and function from that which was pre‐existing; (2) often have inherent comprehension and oral communication difficulties, motor task performance impediments, and difficulty with visuals; and (3) pose difficulties when assessed with standardized dementia measures and can benefit from the use of specialized instruments. The panel recommended that federal guidance be broadened to include adaptations of assessment practices to accommodate neuroatypical conditions; that educational packs be developed for clinicians about such conditions and on detecting and diagnosing MCI or dementia; and that research be expanded to produce more evidence‐based information on both assessing adults with neuroatypical conditions for later‐life adult cognitive diseases/disorders and planning post‐diagnostic care. [ABSTRACT FROM AUTHOR]

Alzheimer's disease and related dementias affects a significant number of adults with intellectual disability (ID), in particular those with Down syndrome. Many affected adults live in small community group homes or with their families. How to provide sound and responsive community care is becoming a challenge for agencies faced with an increasing number of affected adults. This study reports the outcome of a survey of group homes serving adults with ID and dementia, explores the onset, duration and effects of dementia, and speaks to the impact of these on planning for community care of adults with ID. It also examines emerging community care models that provide for 'dementia capable' supports and services. Two models, 'aging in place' and 'in place progression' are examined, as well as 'referral out' reactions, with regard to care practices and critical agency decision making. A programmatic approach, the ECEPS model, for responding to dementia is offered. KEYWORDS. Aging, disability, dementia, care models, group home

Estimates are that one in ten grandparents will take on the role of primary carer to a grandchild for at least six months before the child is age 18, including a child with a developmental delay or disability. This article reviews the current literature on grandparent caregiving with particular attention to African-American grandmother carers and discusses stressors and reports of elevated symptoms of depression among them. The demographics of a sample of 145 African-American grandmothers of children with a developmental disability are reported here as well as the result of a logistic regression analysis of a model of predictors of elevated (above a score of 16 on the CES-D) symptoms of depression. Being younger than age 60, not working outside of the home, not being married, and having no further than secondary school education, were all found to be significant predictors of elevated symptoms of depression in this sample of African-American grandmothers. Interventions for this group of carers must take into account their potential for depression and health problems, economic circumstances, and lack of knowledge of financial and other assistive resources.

The article introduces the journal's special issue regarding care for the mentally ill elderly. The topics covered in the special issue were subjects of research originally presented at the 11th World Congress of the International Association for the Scientific Study of Intellectual Disabilities, held in August 2000.

A demonstration project was undertaken in two of New York City's five boroughs using an intervention model to assess how a three-prong approach using outreach, provision of support groups, and case management could be used to aid grandparents acting as primary carers for children with developmental delay or disabilities. Three small community-based agencies participated in the demonstration. Several common themes were identified that warrant attention when working with older adults who assume later-age parenting roles: (1) recruitment, (2) pressing grandparent problems, (3) unresponsive service systems, (4) falling between the cracks, (5) mutual support, and (6) need for long-term planning. Keywords: Service needs of grandparent carers, support groups for carers, problems and stressors of grandparent carers, unresponsive service systems

Using an informal data capture technique, 164 grandparents caring for 208 children with developmental delay or diagnosed disabilities were surveyed in New York City to determine their health status, emotional state, use of formal and informal services, and general life situation. The vast majority of grandparents were female (96%) and African-American (80%). Their ages ranged from 40 to 82. Generally they had cared for at least one grandchild for an average of seven years. The data showed that for these grandparents (1) caregiving was an all-consuming role, (2) their lives were fraught with uncertainty and they could not access sufficient formal and informal supports, and (3) they were constantly worried about the future. Keywords: Impact of caregiving on grandparents, special needs grandchildren, African-American grandparents, access to services