Suchergebnisse

Background Older people with intellectual disabilities (ID) are a growing population but their age‐related needs are rarely considered and community services are still geared towards the younger age group. We aimed to examine the mental health and social care needs of this new service user group.Methods We identified all adults with ID without Down syndrome (DS) aged 65+ living in the London boroughs of Camden and Islington. The Psychiatric Assessment Schedule for Adults with a Developmental Disability (PASADD) checklist was used to detect psychiatric disorder, the Vineland behaviour scale (maladaptive domain) for problem behaviours and the Dementia Questionnaire for persons with Mental Retardation (DMR) to screen for dementia. Carers reported health problems and disability. Needs were measured with the Camberwell Assessment of Need for adults with Intellectual Disabilities (CANDID‐S).Results A total of 23 older people with ID (13 had mild ID and nine more severe ID) and their carers participated in the survey. In which, 74% had one or more psychiatric symptoms; 30% were previously known with a diagnosis of mental illness. One‐third of the older people screened positive for dementia (range: 17–44%, depending on sensitivity of DMR scores used). Three quarters of the group had physical health problems, 74% had poor sight, 22% had hearing loss and 30% had mobility problems. Carers rated unmet needs for accommodation (22%), day activities, and eyesight and hearing. The people with ID rated unmet needs to be social relationships (44%), information and physical health.Conclusion Older people with ID without DS have considerable prevalence of health problems and psychiatric disorders, including symptoms of functional decline and dementia. Such symptoms are often not recognised and further research into their needs is a priority.

AbstractAuthors conducted a systematic review of the available Dutch, English, and German language literature for the period 1997–2008 on the current knowledge on social‐psychological and pharmacological caregiving with respect to older adults with intellectual disabilities (ID) affected by dementia. Authors note that caregiving occurs on a personal level between the person and their carer and organizational and interorganizational supports have an impact on the quality of care provided. However, the lack of robust evidence to meet the needs of adults with ID affected by dementia means that service organizations often have to extrapolate from the evidence base of dementia care practices in the general population. The review showed that concerns over staff burden, behavioral interventions, and staff training, and applications of models of care were emerging, but were not systematically studied. Authors noted that pharmacological agents and nonpharmacological, psychosocial techniques were being used to assist carers manage behavior, but the evidence base of both nonpharmacological and pharmacological interventions that can help people with ID and dementia and their carers is insufficient because of the absence of systematic and robust studies. The authors note a need for an international research agenda that begins to address gaps in knowledge. With more adults projected to be affected by dementia, a robust evidence‐based body of literature on dementia care in people with ID can help with planning for and providing quality dementia‐capable services.

AbstractThe life expectancy of adults with Down syndrome has increased dramatically over the last 30 years, leading to increasing numbers of adults with Down syndrome now living into middle and old age. Early‐onset dementia of the Alzheimer type is highly prevalent in adults with Down syndrome in the sixth decade, and this has overshadowed other important conditions related to aging among adults with Down syndrome. The authors' aim was to update and summarize current knowledge on these conditions, and examine causes of morbidity and mortality in older people with Down syndrome by conducting a systematic review of the published literature for the period: 1993–2008. They reviewed English‐language literature drawn from searches in the electronic databases Medline, CINAHL, and PsycINFO, as well as supplementary historical papers. The authors conclude that functional decline in older adults with Down syndrome cannot be assumed to be due only to dementia of the Alzheimer type (which is not inevitable in all adults with Down syndrome). Functional decline may be the result from a range of disorders, especially sensory and musculoskeletal impairments. Given the high rates of early‐onset age‐related disorders among adults with Down syndrome, programmatic screening, monitoring, and preventive interventions are required to limit secondary disabilities and premature mortality. With respect to assessment and treatment, in the absence of specialist disability physicians, geriatricians have a role to play.

AbstractAs clinicians often rely on carer reports to identify adults with intellectual disabilities (ID) with early signs of dementia, this study focused on carer‐reported symptoms to ascertain whether carer reports of decline in everyday function would be a more effective screening method to detect possible cases of dementia than reports of memory decline in older adults with ID. Subjects were 154 participants who were reassessed along with their carers two to three years after baseline. A questionnaire for carer‐reported change in everyday function and the Dementia Questionnaire for Persons with Mental Retardation (DMR) were used to assess carer views of everyday function and memory. The diagnosis of dementia was confirmed by two psychiatrists working independently. Participants who developed dementia displayed both everyday function and memory decline. Overall, decline in everyday function appeared to be the best indicator of new dementia cases. Retrospective carer report of change in everyday function was as good as, if not better than, prospective ratings to identify dementia; however, in those with mild ID, memory change was a better indicator of dementia, while in those with more severe ID, decline in everyday function was a better indicator. Decline in everyday function (whether prospective change from baseline or reported retrospectively by carers) appears to be a better screening method for dementia than memory decline, particularly for participants with moderate/severe ID.

AbstractThe authors examined the health‐related literature on aging and intellectual disabilities (ID) published since 1999, with specific focus on examining findings on age‐associated health risk factors, such as cardiovascular, gastrointestinal, and musculoskeletal system health issues, and age‐related oral health. They also examined studies of lifestyle health risks, primarily the contributions to overweight or obesity. Although the review revealed varying differences in the prevalence of health risk factors, significant evidence is emerging that cardiovascular disease is as prevalent among people with ID and is as common a cause of death as in the general population. However, the review showed that the variations in prevalence were culturally dependent. Digestive system problems were evident with high occurrence rates of helicobacter pylori, gastroesophageal reflux disease, and constipation. The review revealed a growing body of work on health risk factors, such as overweight and obesity, which are often linked to the onset of a variety of diseases and impairing conditions. Healthier lifestyles, better nutrition and more exercise, and greater surveillance of health risks were seen as ways to improve the health status of aging adults with ID.

Background  One trade‐off for increased independence of adults with intellectual disabilities in developing countries is that they may find themselves more exposed to the negative perceptions held by the general population regarding the mentally ill and disabled. The aim of this study was to adapt and translate a tool to measure felt stigma in people with intellectual disabilities designed in the United Kingdom (UK) to make it culturally viable, and to determine its reliability and validity in the multi‐ethnic and multilingual context of South Africa (SA) and to compare the item responses and factor structures of the tool between the UK and SA.Methods  We translated the tool into local languages and refined it by conducting focus groups and pilot studies with professionals and adults with intellectual disabilities, after which test–retest reliability, factor analysis and internal consistency were calculated.Results  Participants were from three different population groups: Afrikaans (n = 71; 37%), English (n = 67; 35%) and Xhosa (n = 53; 28%), who had mild (n = 106; 56%) or moderate intellectual disabilities (n = 85; 44%). 98 (51%) were re‐interviewed. The resulting international version of the perceived stigma measure consisted of 10 questions with good test–retest reliability (κ ranging from 0.41 to 0.59) and a similar factor structure to the UK version, despite including a different set of questions.Conclusions  There is evidence for the validity of felt stigma ratings reported by adults with intellectual disabilities, despite different cultural and health service contexts.

Alzheimer's Research Trust ; National Institute on Disability, Independent Living, and Rehabilitation Research ; Scottish Government ; Alzheimer's Research Trust: 90RT5020-03-00 ; National Institute on Disability, Independent Living, and Rehabilitation Research: 90RT5020-03-00 ; Scottish Government: 90RT5020-03-00 ; 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. It also explored current practices in providing PDS in intellectual disability services. Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines 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. Conclusions: 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, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Whether the increased risk for coronavirus disease 2019 (COVID-19) hospitalization and death observed in Down syndrome (DS) are disease specific or also occur in individuals with DS and non-COVID-19 pneumonias is unknown. This retrospective cohort study compared COVID-19 cases in persons with DS hospitalized in Spain reported to the Trisomy 21 Research Society COVID-19 survey (n = 86) with admissions for non-COVID-19 pneumonias from a retrospective clinical database of the Spanish Ministry of Health (n = 2832 patients). In-hospital mortality rates were significantly higher for COVID-19 patients (26.7% vs. 9.4%), especially among individuals over 40 and patients with obesity, dementia, and/or epilepsy. The mean length of stay of deceased patients with COVID-19 was significantly shorter than in those with non-COVID-19 pneumonias. The rate of admission to an ICU in patients with DS and COVID-19 (4.3%) was significantly lower than that reported for the general population with COVID-19. Our findings confirm that acute SARS-CoV-2 infection leads to higher mortality than non-COVID-19 pneumonias in individuals with DS, especially among adults over 40 and those with specific comorbidities. However, differences in access to respiratory support might also account for some of the heightened mortality of individuals with DS with COVID-19. ; The lab of M.D. is supported by the Departament d'Universitats, Recerca i Societat de la Informació de la Generalitat de Catalunya (Grups consolidats 2017 SGR 926, 2017 SGR 138). We also acknowledge the support of the Agencia Estatal de Investigación (PID2019-110755RB-I00/AEI/10.13039/501100011033), the European Union's Horizon 2020 research and innovation programme under grant agreement No 848077, Jerôme Lejeune Foundation (No 2002), NIH (Grant Number: 1R01EB 028159-01), Marató TV3 (#2016/20-30), JPND Heroes project. CRG acknowledges the support of the Spanish Ministry of Science and Innovation to the EMBL partnership, the Centro de Excelencia Severo Ochoa, and the CERCA Programme/Generalitat de Catalunya. The CIBER of Rare Diseases (CIBERER) and CIBER of Physiopathology of Obesity and Nutrition (CIBEROBN) are initiatives of the ISCIII. D.R.A. is partially supported by the Fondo de Investigaciones Sanitarias (FIS grant PI19/00634, European Fund for Regional Development—EFRD) and the Foundation Jérôme Lejeune (grant no. 1777-2018). The Research Programme on Biomedical Informatics (GRIB) is a member of the Spanish National Bioinformatics Institute (INB), funded by ISCIII and EDER (PT17/0009/0014). The DCEXS is a 'Unidad de Excelencia María de Maeztu', funded by the AEI (CEX2018-000782-M). The GRIB is also supported by the Agencia de Gestio d'Ajuts Universitaris i de Recerca (AGAUR), Generalitat de Catalunya (2017 SGR 00519). AH was supported by the HERCULES Center (NIEHS P30ES019776) and by the LuMind IDSC Foundation.