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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]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. We propose 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 international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy. [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. [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. [ABSTRACT FROM AUTHOR]

The article discusses issues and topics about intellectual disabilities and aging.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Present research conducted on sensory impairments in adults with intellectual disability. Research population utilized in this study; Reference to reported hearing loss among adults; Vision problems and dementia among older adults; Statistical data analyzed in this research.

Presents information on a demonstration project in New York State, which evaluated how area agencies on aging (AAA) would aid families caring for persons with developmental disabilities. Details on AAA outreach and direct-aid services; Identification of four major distinctions which differed from the work with older carers of persons with developmental disabilities; Assessment of AAA responsibilities.

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. [ABSTRACT FROM AUTHOR]