Matthew P. Janicki’s research while affiliated with University of Illinois Chicago and other places

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. To address this issue, an international expert panel convened to establish adaptations of prescribing criteria suitable for DS patients and parameters for access to Centers for Medicare & Medicaid Services (CMS) registries. The panel proposed mitigating disparities by modifying CMS and payer criteria to account for younger onset age, using alternative language and assessment instruments validated for cognitive decline in the DS population. The panel also recommended enhancing prescribing clinicians' diagnostic capabilities for DS and initiated awareness‐raising activities within healthcare organizations. These efforts facilitated discussions with federal officials, aimed at achieving equity in access to anti‐amyloid immunotherapeutics, with implications for national authorities worldwide evaluating these and other new disease‐modifying therapeutics for Alzheimer's disease.

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. 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. Results 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. Conclusions 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.

Dementia is increasing as nations’ populations across the world age and older adults survive in increasing number. Dementia has various etiologies and forms of expression thus accurate diagnosis is always a challenge. Detection of any adult-age cognitive impairment in health care settings is difficult in general but can be especially challenging among adults with neuroatypical or neurodivergent conditions (NACs). Most clinical guidelines/protocols applicable to the general population for assessing mild cognitive impairment or dementia do not include considerations when assessing adults with NACs. This article addresses the obstacles to early detection and assessment of adults with NACs and recounts what one national group undertook to raise awareness of this obstacle. These conditions often present assessment challenges as adults with NACs often have problems with comprehension, oral communication, motor task performance, recognition of assessment related visuals, and comfort in testing situations. Clinicians assessing adults with NACs face challenges due to an inappropriateness of using standardized dementia assessment measures, are often untrained or unfamiliar with discerning pre-existing conditions from new cognitive impairment and are uninformed as to how to adapt the testing situation. The investigation into NACs and dementia assessment lead to a series of recommendations to raise awareness among clinicians, seek to enlist professional organizations in adapting existing instruments, and increase research into NACs and dementia.

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.

With the increasing life expectancy in the last five decades, people with intellectual disabilities (ID) are exposed to the risk of age-related neurodegenerative disorders including dementia. The prevalence of dementia is increased in people with ID compared with that in the general population. People with Down syndrome (DS) are at even a higher risk of developing Alzheimer’s dementia (AD) compared with non-DS people with ID. However, there are difficulties in making an early and accurate diagnosis of dementia in individuals with ID and the screening instruments such as the Mini Mental Status Examination that are used in the general population often show floor effects when used for individuals with ID because of their pre-existing cognitive impairment, the level of which varies depending on the severity of ID. Both informant-rated and direct neuropsychological tests have been used for the case detection of dementia for individuals with ID. However, direct neuropsychological tests cannot be used for those who have severe ID and their validity could still be questionable in a number of cases of mild to moderate ID.There are many similarities and some differences in the clinical manifestation of dementia in individuals with ID and the non-ID general population. Impaired recent memory and confusion in the context of relatively intact distant memory are likely to be the early symptoms in individuals with ID who have a mild ID, whereas loss of skills and change in behaviour are likely to be the early features for those with more severe ID. Many symptoms, including features of ‘frontal lobe dysfunction’ that tend to appear late in dementia in the general population, may appear early in individuals with ID and DS.Ideally, individuals with ID should be screened for signs of dementia from before the age of 30/35. A multi-disciplinary approach should be taken for diagnosis of dementia in individuals with ID using a combination of informant-rated scales and neuropsychological tests in a longitudinal fashion over time. Important differential diagnoses include hypothyroidism, depression, and sensory impairment. Assessment should include physical, psychological, and social aspects including appropriate examinations and investigations. The evidence-base for the pharmacological management of dementia in ID and DS is poor, which does not allow to draw any definitive conclusion about their efficacy in this population. Therefore, the same pharmacological regime that is used in the non-ID population along with non-pharmacological interventions should be considered for people with ID.KeywordsDown syndrome Alzheimer’s dementia Intellectual disability Diagnosis Screening Diagnostic instruments Treatment Service issues

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.

We carried out a systematic review of healthy ageing interventions for adults with IDD. Twenty-three prospective studies including 2,398 men and women [average age: 44.3 years old] were found worldwide. Among them were only five RCTs. The designs usually were within or between subjects involving small sample sizes (ranging from 8 to 379 participants), mostly non-randomised or without follow up. We identified four thematic areas: Physical activity - nutrition and health (n = 10); Health education and health exams (n = 6); Social inclusion and community participation (n = 3); and Multi-components (n = 4). Overall, studies found effective outcomes, such as loss of body weight and improvement in nutritional habits, despite a few negative findings. We conclude that healthy ageing initiatives for people with IDD continue to be scarce, incipient, and sporadic. More research should embrace health promotion in people with IDD as a programme practice and public policy.

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.