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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.

Background: Measures of quality of life (QOL) must be appropriate for specific groups but comparable across groups. In this paper, we compared how QOL is measured in research with older adults with and without an intellectual disability (ID). Methods: Measures used in 2 population studies of older adults with and without ID (Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing [IDS-TILDA], and The Irish Longitudinal Study on Ageing [TILDA]) were examined. Framed by Schalock's Quality of Life Framework, conceptual content of measures of emotional wellbeing and self-determination were compared. The acceptability and concurrent validity of IDS-TILDA measures were evaluated. Results: The same measures of emotional wellbeing were identified in both surveys. However, measures of self-determination captured different aspects of the construct. Concurrent validity between self-determination and emotional wellbeing measures in IDS-TILDA was weak. Conclusions: Research with adults with and without ID is limited by the nature of current inclusive QOL measures: Instruments are required that have adequate conceptual coverage and are comparable across groups but appropriate and feasible to use.

Background: The literature on influences of community versus congregated settings raises questions about how social inclusion can be optimised for people with intellectual disability. This study examines social contacts for older people with intellectual disability in Ireland, examining differences in social connection for adults with intellectual disability and other adults. Materials & Methods: Data were drawn from the IDS-TILDA study in Ireland. A nationally representative sample (n = 753) included adults aged 40 years and older, with additional comparison with general population participants. Predictors of social contacts were explored. Results: Residence, level of intellectual disability and age were significant factors determining social contact. People in institutional residences, older respondents and those with severe/profound intellectual disability had the lowest levels of contact; older adults with intellectual disability had much lower rates than general population counterparts. Conclusions: Community-dwelling people with intellectual disability have greater social contact than those living in institutions, but levels are below those for other adults in Ireland.

Background:Historically, there has been higher and earlier mortality among people with intellectual disability as compared to the general population, but there have also been methodological problems and differences in the available studies. Method: Data were drawn from the 2012 National Intellectual Disability Database and the Census in Ireland. A standardized mortality ratio (SMR) was calculated, as well as average age at death. Ratios and differences were further examined for the influence of age, gender and level of intellectual disability. Results: Mortality in persons with intellectual disability was four times higher and they were, on average, dying 19 years earlier than peers in the general population. Women with intellectual disability were living longer than males with intellectual disability, but differences in survival as compared to the general population were greater for these women. There was little change in average age at death over 10 years, and death was earlier the more severe the level of intellectual disability. Discussion: The use of mortality ratios rather than average age at death alone is recommended, as well as greater standardization in use of data sets including the whole population, given high levels of earlier deaths in people with intellectual disability.

Background: Monitoring population trends including mortality within subgroups such as people with intellectual and developmental disabilities and between countries provides crucial information about the population's health and insights into underlying health concerns and the need for and effectiveness of public health efforts. Methods: Data from both US state intellectual and developmental disabilities service system administrative data sets and de-identified state Medicaid claims were used to calculate average age at death and crude mortality rates. Results: Average age at death for people in state intellectual and developmental disabilities systems was 50.4-58.7 years and 61.2-63.0 years in Medicaid data, with a crude adult mortality rate of 15.2 per thousand. Conclusions: Age at death remains lower and mortality rates higher for people with intellectual and developmental disabilities. Improved case finding (e.g. medical claims) could provide more complete mortality patterns for the population with intellectual and developmental disabilities to inform the range of access and receipt of supportive and health-related interventions and preventive care.

The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing is a national longitudinal study on the aging of people with an intellectual disability (ID) using a randomly selected sample of people with ID over the age of 40. In total, 367 people with an ID completed the aging perception self-report only section. Over 57% of people described their health as very good to excellent with no significant difference in health perceptions found for gender, level of ID, or living circumstance. Exploring people's perceptions utilizing PASW Text Analytics for Surveys 4.1 perceptions often supported negative views of the consequences of aging. These findings suggest challenging negative aging concepts is essential to promote positivity with associated improved health and wellbeing.

There are limited studies on the prevalence of epilepsy and co-morbid conditions in older adults with an ID. To begin to address this prevalence of epilepsy was estimated for participants in the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing. Associations with demographic variables and co morbid health conditions were examined. It was found that prevalence was high (30.7%); but declined as people aged. Those with epilepsy were less likely to live with family, independently or in community settings, rates of refractory epilepsy were high and, despite medication over half of those with epilepsy still reported experiencing seizures. Given these findings, people with ID and their careers have considerable needs for information about epilepsy management, and for support from specialist ID and epilepsy services.

We propose that the European Union (EU) should be used in citizenship education as a possible vehicle for citizens' influence on issues outside the reach of the nation-state. Citizenship education thus ought to include the EU as an arena for political action and relevant "EU knowledge" ought to be part of the curriculum. Concepts from the German politische Bildung tradition are used to discuss what should be the content of an education aiming at educating young people to (become) democratic citizens and the level of competence required in order to function as a democratic citizen. The "reflecting spectator" is given special attention. Environmental issues are chosen, for three reasons, to show how EU education can be part of citizenship education: the transborder character of environmental problems, the multilevel responsibilities connected to them, and the fact that virtually all European environmental policy is made in, or in close association with, the EU.

Background: The benefits of being in employment are well documented; however, underemployment is a critical issue for people with intellectual disability (ID). Some individuals perceive themselves as being in employment when in fact they are attending a non-work site such as a day service. The impact that this perception of employment has on other areas in life has not been investigated and research into this area could have implications for both policy makers and service providers. Materials and Methods: The first wave of the intellectual disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) included a series of questions on employment that yielded data for a representative sample of 753 participants with intellectual disability aged 40 and over randomly selected from Ireland's National Intellectual Disability Database (NIDD). Results and Discussion: Overall, 6.6% of the population were in real paid employment, 7.4% in perceived employment, 12% in sheltered employment and 73.5% were unemployed. Differences were identified between these two groups in relation to social activities, levels of depression and self-rated health. Further investigation is needed into the area of perceived employment. (Contains 1 table.)

Aim: To better describe the role and timing of palliative care in supporting persons with intellectual disabilities and advanced dementia (AD). Background: Specialist palliative care providers have focused mostly on people with cancers. Working with persons with intellectual disabilities and AD offers opportunities to expand such palliative care to other populations and disease conditions and to better understand the timing and role of palliative care delivery. Methods: Thirteen focus group interviews were held involving staff in six intellectual disability services and one specialist palliative care provider in Ireland. A qualitative descriptive approach was taken to analysis. Results: Specialist palliative care staff recognized that person-centred care delivered in intellectual disability services was consistent with palliative approaches, but staff in intellectual disability services did not consider advanced dementia care as "palliative care". Both groups were unsure about the role of palliative care at early stage of dementia but appreciated specialist palliative care contributions in addressing pain and symptom management challenges. Conclusions: Successful extension of palliative care principles, philosophy and services to persons with intellectual disabilities and AD will require in-depth understanding of prevailing care philosophies and agreement regarding timing and the unique contributions of specialist palliative care services.

Background: Burnout has been considered important to understanding the well-being of workers in the intellectual disabilities (ID) field and the quality of services delivered to clients/consumers. However, little research has examined the psychometric properties and applicability to staff in ID services of one of the most widely used burnout measurements--the Human Services Survey version of the Maslach Burnout Inventory (MBI-HSS). Methods: Data were gathered using a mailed questionnaire comprising the MBI-HSS and demographic information. The sample consisted of 435 staff delivering direct care and working in out-of-home community placements for persons with ID in New York state. The factorial structure of the scale was examined using confirmatory and exploratory factor analysis. Internal consistency estimates of reliability of the MBI-HSS were determined using Cronbach's alpha. Results: Confirmatory factor analysis supported the MBI-HSS as an acceptable measure to evaluate burnout in ID services staff. However, the reliability statistics obtained for the Depersonalization (DP) sub-scale was much lower than what has been reported in studies with other staff populations. An exploratory factor analysis suggested that a four-factor solution, dividing the DP sub-scale into two factors, provided a somewhat better fit for the sample. Conclusions: The use of the MBI-HHS as an instrument for measuring burnout among ID workers has its attraction but also its limitations. In particular, the DP sub-scale should be used with caution because there appear to be wording issues for staff in ID settings that may lead to inconsistent responses.

To address the need for more employment opportunities for individuals with intellectual disabilities (ID), many vocational rehabilitation agencies have established social ventures called affirmative businesses. Unlike most traditional vocational rehabilitation programs, affirmative businesses compete directly with for-profit businesses producing similar goods or services. Given that nonprofit agencies operating these businesses are supported by taxpayer dollars and private donations, there is increased scrutiny and expectations for legal and ethical behavior and practices. An earlier study of 15 affirmative businesses identified themes and management strategies that contributed to business viability or failure. A reexamination of the findings through the lens of corporate citizenship theory (being economically responsible, abiding by the law, engaging in ethical and moral management, and ensuring the philanthropy of businesses) found that affirmative businesses adhering to the theory's components succeeded, while those that did not failed. The two case studies presented here demonstrate that knowledge transfer of the theory's components from the for-profit business sector to the nonprofit sector is possible and suggest this innovative business approach as a framework to attain sustainable viability within affirmative businesses. The viability of these ventures is especially important for those who live in areas where few competitive employment jobs are available or for those with the most severe ID who require higher levels of job support and job stability. Through an in-depth examination of the theory's components, we suggest options for improving the likelihood that affirmative businesses will achieve viability and provide community-based employment for individuals with ID.

Generally, staff working in settings that provide care for adults with intellectual disabilities (ID) have not received specific education with respect to extended care for terminal illnesses or late-stage dementia. Equally, staff working in specialist palliative care often are not familiar with the unique issues of supporting persons with intellectual disabilities affected by dementia. To understand care concerns with respect to supporting persons with ID and advanced dementia, and to develop, deliver, and evaluate an educational intervention with staff in ID settings and specialist palliative care services, 14 focus group interviews were conducted with staff across six ID services and one specialist palliative care provider in the greater Dublin (Ireland) area. Qualitative descriptive analysis resulted in the emergence of key themes and formed the development of an educational intervention. Pre- and posttest questionnaires assessed responses to a pilot delivery of the educational intervention. Formal feedback from staff indicated that the educational intervention was highly valued and addressed key training concerns. They agreed that the training supported "aging in place," and the preparation for a "good death" including support for staff, peers, and family in their grief and bereavement. An educational intervention in the form of a trainer manual was produced to support cross-service system in-service training on issues of addressing advanced dementia in persons with ID.

Consideration of the relationship between physical and mental health co-morbidities in ageing persons with Down syndrome (DS) and Alzheimer's dementia (AD) is of clinical importance both from a care and resource perspective. To investigate and measure health co-morbidities in ageing persons with Down syndrome with and without AD. Recorded physical and mental health needs were ascertained for 124 persons with DS is greater than 35 years through a systematic and detailed search of individual medical and nursing case records. Differences in persons with and without AD were investigated, by stage of dementia and by level of intellectual disability (ID). A summed score for health co-morbidities was created and compared using t-tests. Persons with AD had significantly higher co-morbidity scores than persons without AD (t = 8.992, d.f. = 121, P is less than 0.0001). There was also a significant difference in summed co-morbidity scores for persons at end-stage vs. persons at mid-stage AD (t = 6.429, d.f. = 56, P is less than 0.0001). No differences were found by level of ID. Increasing health co-morbidities in persons with DS and AD have important implications for care and resources. Appropriate environmental supports combined with competent skilled staff are crucial and will have an important impact on the quality of life for this increasingly at risk population.

The authors sought to modify and apply Pearlin et al.'s "Stress and Coping Framework" model (which was designed to guide research on family caregiving) to research that could help them understand the experiences of staff carers of persons with intellectual disabilities affected by dementia. The authors, two experienced researchers and practitioners in intellectual disabilities and dementia, reviewed the existing literature on the "Stress and Coping Framework" model, as well as additional literature on family and staff caregiving for persons with dementia and intellectual disabilities, in an attempt to identify the model's key variables and to determine whether these variables could be applied to research with staff. They determined that the domains of the "Stress and Coping Framework" model appeared relevant for staff carer research; but proposed changes in some of the variables defining those domains (e.g., some of the original demographic variables were dropped as less important for staff carers and some organizational variables are added). The authors concluded that with modification, Pearlin et al.'s model of stress and coping is a useful guide to support research on the experiences of staff carers of persons with intellectual disabilities affected by dementia. To this end, they have proposed a modified "Stress and Coping Framework" structure that can be applied to research in the area of staff burden.

It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more restrictive settings for persons with intellectual disabilities (ID) and AD. This study focused upon the development of a measure of subjective burden, The Caregiving Difficulty Scale Intellectual Disability (CDS-ID) as a first step in addressing this measurement deficit. An existing caregiver subjective burden scale, the Caregiving Hassles Scale (CHS) was adapted for use with 203 staff caregivers of persons with ID and AD. Preliminary testing of existing CHS items and proposed new items was carried out in two countries, Ireland and the USA. Confirmatory factor analysis with the existing items and exploratory factor analysis with existing and proposed new items for the scale was used to establish the content and test the psychometric properties of a revised scale, the CDS-ID. On the existing CHS items, staff carers appeared to experience greater subjective burden than has been reported for family caregivers. However, the psychometric properties of the CHS found with this population were poor. Factor analysis produced a revised scale, the CDS-ID with three subscales with Cronbach alphas ranging from 0.75 to 0.93 and 38 items overall. This new scale when used with objective burden and other scales offers an opportunity to more systematically measure the difficulties staff experience when caring for persons with ID who present with symptoms of AD.

This study evaluated the impact of an information and referral intervention designed to help family caregivers of people with dementia obtain needed health and human services. Caregivers (N = 608) of community-residing people with dementia were surveyed about their need for and use of community services. Of the 608 caregivers, 203 agreed to be referred to a staff member of an Alzheimer's Association chapter to get help finding needed health and community services. The results of a logistic regression indicated that education, marital status, and perceptions about the helpfulness of services were significant predictors of wanting a referral. The information and referral help given by staff of the Alzheimer's Association chapters resulted in a significant increase in the use of human services, but no change in the use of health services. Practice implications are discussed.

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.

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)

Social workers (n=395) were surveyed concerning their role in assisting older parents of developmentally disabled individuals with permanency planning. Practitioners, administrators, and educators similarly perceived ease in counseling aging families, but also noted their need for additional resources and specialized training. Recommendations address reducing "blaming" attitudes among social workers and expanding best-practice knowledge. (Author/DB)