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People with intellectual disabilities (ID) have high levels of sedentary behaviour and co-morbid health conditions. There is also increased longevity for this group which is an incredible success story but one which also poses challenges to the health system. For the first time, the mainstream health system needs to plan for and address age related health needs of people with ID. It also demands consideration of age-appropriate health-promotion efforts to support this ageing population with life-long disability. A physical activity programme, People with Intellectual Disability as Physical Activity Leaders (PPALs), was co-designed and co-developed with older adults (40+ years) with intellectual disability (ID). The process, content and outcomes of the pilot are presented in this paper. Expertise from three sectors: non-statutory academic and people with intellectual disabilities and their supporters worked collaboratively for successful completion of the project.

Background: People with intellectual disability often present atypically for various health conditions, making it challenging to identify concerns, particularly when communication challenges are also considered. Additionally, they may face barriers to healthcare access, resulting in many conditions going unnoticed. Health screening inequities are also evident in this population, and osteoporosis, a silent condition often only diagnosed postfracture, requires screening; however, if this does not happen, it may result in unnecessary fracture. Therefore the aim of this study is to identify predictors of osteoporosis in older adults with intellectual disability and examine potential inequity in the diagnosis of the condition. Methods: The study used data from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA). Bone quality was measured using quantitative ultrasound (QUS). Logistic regression was performed to identify significant predictors of poor bone quality, including chronic health conditions, dietary intake, medication use and activity levels. Results: Out of 575 participants who completed QUS, osteoporosis prevalence was objectively measured at 41%, with a further 33.2% measured within the osteopenic range, but less than 2 in 10 had a doctor's diagnosis of osteoporosis. Reported Dual-Energy X-ray Absorptiometry screening uptake was low at 18.2%. Three major predictor variables of osteoporosis and osteopenia were found significant: difficulty walking 100 yards, taking antiepileptic drugs medicines and taking proton pump inhibitors. The model achieved an overall classification accuracy of 70.8% for osteopenia and 72.5% for identifying osteoporosis. Conclusion: The study highlights the different risk factors in people with intellectual disability, the potential for missed diagnoses and the likelihood there is inadequate screening. There is an urgent need for robust risk assessment and reasonable adjustments to ensure equitable screening and targeted preventive strategies. Clinicians must consider specific concerns for this population to avoid missed diagnoses and reduce the adverse effects of osteoporosis/osteopenia, such as an increased risk of fragility fractures.

Background: People with intellectual disabilities are living longer and are increasingly diverse, with health and care needs that are varied and complex. Without changes to funding, services have found it difficult to respond to needs and wishes. Method: A descriptive mixed methods design study, data were collected through questionnaire, focus groups and individual interviews from intellectual disability service managers, direct care staff and older people with intellectual disabilities and family members. Results: Continued reticence on the part of some community healthcare providers to treat people with intellectual disability was noted. Although some service innovations were noted, housing, staffing levels, staff mix and the timely provision of equipment were all reported to impact the ability of services to respond to changing needs. Current per-capita funding practices were reported as unresponsive to growing age-related complexity and fundamentally unsustainable. Conclusions: The health inequalities experienced by people with intellectual disabilities are compounded as they age with complex age-related health needs. There is an urgent need for revision of the service model in Ireland and instigation of flexible and responsive approaches to funding.

Background: Spirituality and spiritual support for older people with intellectual disability are deemed important, however little is known about their specific needs. This paper reports for the first time on the religious and spiritual practices of older adults with intellectual disability. Methods: A national longitudinal study examined the prevalence of spiritual practices among older people with intellectual disability in the Republic of Ireland. Results: Older people with intellectual disability seek and receive solace from religious and spiritual practices, especially if they are lonely, in poor health, distressed or bereaved. There is likely a social benefit to spiritual and religious aspects of life that would be beneficial to explore further. Conclusions: Globally more research is required and efforts should be made to ensure greater opportunities for inclusion in societal spiritual and religious activities and to more clearly determine the spiritual needs of this population.

Background: Constipation impacts health-related quality of life with a burden similar to other chronic conditions. This study characterises the prevalence of constipation and its associated factors in older adults with intellectual disability. Methods: Data from the Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing was analysed using bivariate and multivariate approaches. Results: Constipation affected 43.5% of this cohort and was more common in females, those in residential settings, and those with a severe/profound level of intellectual disability. The type of residence, level of intellectual disability, a low fat diet, high cholesterol, multimorbidity and, physical activity predicted constipation status with 67.7% accuracy. Physical activity was associated with lower constipation prevalence, where minimal activity was sufficient to observe this effect. Conclusions: Constipation is a common health concern in older people with intellectual disability. This analysis reveals characteristics that should inform the careful monitoring of bowel health in this population.

Background: Before COVID-19, people with intellectual disabilities were digitally excluded, facing difficulties accessing and using technology. The pandemic outbreak closed down many in-person services and supports for this population. Methods: This study examined changes in technology use to support the healthcare and social connections of older adults with intellectual disability in Ireland (n = 682) during COVID-19. Decision tree analyses explored factors associated with using technology for health and social connection; and to explore relationships between technology use and subjective outcomes of stress/anxiety and of positives during this period. Findings: Technology use for healthcare and social connection increased during COVID-19, but not enough to make up for the loss of in-person care/connection. Residence type was associated with increased use of technology for healthcare utilisation, with the highest rates among community group home residents and the lowest among those in independent/family settings. Increased technology use to speak with both family and friends was associated with prior digital skills and digital access. Increased technology use was significantly associated with both positive and negative experiences during the pandemic. Conclusions: The COVID-19 pandemic offered an opportunity for increased digital connection for older adults with intellectual disabilities, but not all benefitted. Those with prior skills, available supports, and the greatest need to connect were more likely to enhance their use of technology. The complexity of the COVID-19 period, including the general impact on mental health and well-being, means that the role technology played in supporting quality of life and mitigating stress/anxiety needs further and longer-term investigation.

Background: This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. Method: Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth, semi-structured telephone interviews. Template analysis was used to analyze the interviews. Results: Obstructions in performing their duties left carers feeling powerless and experiencing moral conflict distress, moral constraint distress and moral uncertainty distress. Most managed to connect to the moral dimension in their work through peer support, understanding they fulfilled the wishes of the deceased, and/or thinking about how they or others did the best they could for the person they were caring for. Conclusions: This research demonstrates that while restrictions may have been effective in reducing the spread of COVID-19, they were potentially damaging to carer wellbeing.

Background: The COVID-19 pandemic has placed enormous strain on health systems around the world, undermining the mental health and wellbeing of healthcare workers. Supporting people with intellectual disabilities may be particularly challenging for workers, as some people with intellectual disabilities may have a limited understanding of the pandemic, and find it challenging to adhere to the restrictions imposed by public health guidelines such as social distancing, lockdowns and change in usual routine and activities. In addition, many people with intellectual disabilities have increased vulnerability to more negative effects of COVID-19, with significantly higher mortality rates. Although there is emerging research on the mental health of healthcare staff during this time, there has been little specific work on the mental health of staff working with people with intellectual disability, particularly a lack of qualitative research. Methods: The current study employed semi-structured interviews with 13 healthcare workers (12 women and 1 man) who were working with people with intellectual disability during the COVID-19 pandemic. The interview data were analysed using thematic content analysis. Findings: The participants spoke in depth about the challenges of the working environment, the impact of providing care during the pandemic on staff mental health, supporting staff mental health and wellbeing and learning for the future. Conclusions: Systematic efforts are required to protect the mental health of this staff cohort, as well as encouraging resilience and successful coping among staff themselves.

Background: As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well-being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) provides a unique insight into the health and well-being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS-TILDA Carer's Study. Methods: The IDS-TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3-yearly cycle. The family carers complete a self-administered, mixed-methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS. Findings: In each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard. Conclusions: There is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well-being as they provide care for an increasingly ageing sibling.

This paper explores contemporary Irish social policy for family caregivers with specific focus on the dynamic between the individual, the family and the state in terms of the social contract for care provision for people with intellectual disability. Drawing from Bacchi's analytical framework (Bacchi, 2009), the Irish National Carers' Strategy is interrogated specifically with regards to how it frames and assumes the social contract for family care provision for adults with an intellectual disability. We suggest that Irish social policy constructs family caregiving as the assumed natural and neutral point of departure for providing care within society, and this constructed identify is subsequently reinforced through the provisions contained with the policies themselves that seek to support such caregivers. A fundamental reconsideration of the social contract for such care provision and support with society would appear warranted.

This paper describes and analyses the experience of the participants of an undergraduate reading group on 'The Wartime Quartet'. In the first section, I explain the set-up of the reading group. In the second section, I discuss what the participants shared and the trends we noticed in our experiences as women and marginalised genders studying undergraduate philosophy In the third section, I explain why the philosophy of the Quartet was itself vital to our development and how it enabled us to begin critically engaging with the material presented in our courses. My fourth section introduces a phenomenon I call "disassociated disagreement" (DD) and uses testimonies from former members of the reading group to illustrate why this phenomenon is central to understanding the confusion that sometimes presents in students of philosophy. I then discuss a strategy for combating DD and illustrate how students' seeming confusion can provide a pathway to unique and insightful philosophical perspectives. I conclude by situating my discussion within the broader framework of research into women's representation in philosophy and close by arguing that the concept of DD can be a potent tool for encouraging more philosophy undergraduates who belong to marginalised groups to pursue further study.

Person-centred planning (PCP) puts individuals with an intellectual disability at the centre of service and support planning, identifying how individuals wish to live their lives and what is needed to make that possible. PCP has been identified as having the potential to facilitate improved social inclusion and community participation. A mixed-methods approach combined quantitative analyses with qualitative case studies of individuals with severe-profound intellectual disability to assess the impact of PCP on community participation for adults with an intellectual disability at a disability service in Dublin. We conclude that PCP may provide a good basis to plan community participation and, with the right supports in place, may provide opportunities for people with complex needs to improve their community participation. Supports including familiar staff and family are critical to the success of PCP for people with complex needs, and their absence may undermine the best intentions of PCP for this population.

Background: Friendship is important to quality of life, yet people with intellectual disability have more restricted social networks and fewer friends outside family and support staff. Method: Data from a nationally representative longitudinal study of older adults with intellectual disability (aged >40) examined rates and types of friends. Factors associated with having a best friend and friendship quality were explored. Results: A large majority (92.4%) had friends but just over half (52%) had a best friend. Co-resident friends (71.8%) were more common than non-resident friends (62%), while staff friendships (62.5%) were important. The majority of best friends were peers with intellectual disability (63.2%), carer/service providers (15.9%) or family (8.4%). Challenging behaviour and communication difficulty were associated with reduced likelihood of having a best friend. A best friend with intellectual disability was associated with lower friendship quality scores. Conclusion: Limited choice and social opportunity may result in a precarious form of friendship for older people with intellectual disability that undermines their quality of life.

Background: This study explored antiepileptic drug use, frequency of seizures, and the effect of psychotropic drugs with the potential to lower the seizure threshold in persons diagnosed with epilepsy and intellectual disability. Methods: Data for this study were drawn from Wave 3 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Psychotropic drugs were categorised for potential seizure threshold-lowering risk (low, moderate, high). Binary logistic regression was performed to identify factors associated with seizure frequency. Results: Epilepsy prevalence was 35.8% (n = 196), of which 57.7% reported a mental health condition. Participants with seizure data classified as taking at least one moderate-/high-risk medication were significantly less likely to experience a seizure compared to participants taking no potential seizure threshold-lowering medication. Conclusions: Psychotropic drugs recommended to be avoided or used with caution did not provoke increased seizure frequency in this cohort.

Background: Medication data are a valuable resource in epidemiological studies. As the most common data collection method of medication data is self‐report, it is important to understand the accuracy of this in comparison with other methods such as dispensing records. The aim of this study was to compare the agreement between two different sources of medication data of older adults with intellectual disability (ID). Methods: Self‐report medication data were gathered from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing and linked to national pharmacy dispensing records. The kappa statistic was used to measure agreement between the two data sources for psychotropic medication. Results: The lowest agreement level was 'moderate' for the number of anxiolytics reported (kappa 0.56). The highest level of agreement was 'almost perfect' for the binary variable of antipsychotics (kappa 0.91). Other agreement results were 'substantial' or 'almost perfect'. Conclusions: Good agreement was found between the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing medication dataset and national dispensing records. Self‐report medication data appear to be a valid method of data collection in psychotropic medication use in adults with ID. [ABSTRACT FROM AUTHOR]

Background: Inactivity is a correlate of adverse health. Adults with an intellectual disability (ID) are more inactive than the general population and often present with more complex health issues. Self‐reported activity questionnaires such as the International Physical Activity Questionnaire – Short Form (IPAQ‐SF) and Rapid Assessment of Physical Activity (RAPA) questionnaire are the predominant source of activity information because of their low cost, non‐invasive nature, ease of administration and interpretation of results. Methods: Correlates of inactivity among the general and ID populations were identified through a literature scoping review. Inactivity was measured using the RAPA and the IPAQ‐SF. A multiple‐imputation chained equation was used to impute missing data. Using Pearson chi‐squared analyses, relationships between these correlates as well as covariates of age, sex, level of ID, body mass index (BMI) and aetiology, and RAPA and IPAQ‐SF categories were explored. Logistic regression provided more detailed analyses. Results were summarised using the Systems of Sedentary Behaviour framework. Spearman correlations examined the IPAQ‐SF and RAPA relationships. Results: Three correlates for inactivity emerged from the IPAQ‐SF and RAPA questionnaire. Up after 07:00 h was a correlate for both. Difficulty walking 100 yards and epilepsy were additional correlates of inactivity. Weak but significant correlations were seen between IPAQ‐SF and RAPA scores. Conclusions: High inactivity levels are present in adults with an ID. The IPAQ‐SF and RAPA questionnaires are weakly correlated. [ABSTRACT FROM AUTHOR]

Background: Arterial stiffness has been associated with an increased risk of cardiovascular disease (CVD) in some patient populations. Objectives: The aims of this study were to investigate (1) whether there is an association between arterial stiffness, as measured by the Mobil-O-Graph, and risk for CVD in a population of individuals with intellectual disability and (2) whether arterial stiffness can predict the risk for CVD. Methods: This cross-sectional study included 58 individuals who participated in wave 4 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Aging (2019-2020). Statistical models were used to address the first aim, whereas machine learning models were used to improve the accuracy of risk predictions in the second aim. Results: Sample characteristicsweremean (SD) age of 60.69 (10.48) years, women (62.1%), mild/moderate level of intellectual disability (91.4%), living in community group homes (53.4%), overweight/obese (84.5%), high cholesterol (46.6%), alcohol consumption (48.3%), hypertension (25.9%), diabetes (17.24%), and smokers (3.4%). Mean (SD) pulse wave velocity (arterial stiffness measured by Mobil-O-Graph) was 8.776 (1.6) m/s. Cardiovascular disease risk categories, calculated using SCORE2, were low-to-moderate risk (44.8%), high risk (46.6%), and very high risk (8.6%). Using proportional odds logistic regression, significant associations were found between arterial stiffness, diabetes diagnosis, and CVD risk SCORE2 (P < .001). We also found theMobil-O-Graph can predict risk of CVD, with prediction accuracy of the proportional odds logistic regression model approximately 60.12% (SE, 3.2%). Machine learning models, k-nearest neighbor, and randomforest improvedmodel predictions over and above proportional odds logistic regression at 75.85%and 77.7%, respectively. Conclusions: Arterial stiffness, as measured by the noninvasiveMobil-O-Graph, can be used to predict risk of CVD in individuals with intellectual disabilities. [ABSTRACT FROM AUTHOR]

Background: Choking is a serious and under-recognised condition for adults with intellectual disability (ID), with health, psychological and potentially fatal consequences. This study aims to determine the prevalence and risk factors for choking in a population-based sample of older adults with ID. Method: 597 adults with ID (mean age: 60 years old; SD = 8) were selected as part of The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing. Information was collected on choking history, comorbidities, challenging behaviours and eating difficulties. Logistic regression was employed to determine risk factors for choking history. Results: 17.3% of participants reported choking history. Eating difficulties, cerebral palsy, visual impairment, being [greater than or equal to] 65 years old and antipsychotic use increased the odds of choking history. Conclusions: Choking is prevalent in our sample. Managing choking risk requires specific responsibilities from the multidisciplinary team. Risk assessment, training staff and caregivers should be implemented in usual care.

Background: People with intellectual disabilities are living longer, with family homes and family caregivers increasingly identified as a key support to this ageing population of people with intellectual disabilities. Method: This systematic review sets out existing evidence from empirically evaluated intervention studies of future care planning for adults with intellectual disability by family carers. Results: This systematic review identified a scarcity of systematic approaches to future care planning for adults with intellectual disabilities and their family carers. However, evidence from the review suggests positive outcomes for families once they engage in a future planning process. Conclusions: Contemporary social policy orientation, which emphasizes reliance on families to provide care, along with an ageing population of people with intellectual disabilities, and diminishing caring capacity within family networks, suggests an urgent need for a more expansive research base that evaluates approaches to supporting adults with intellectual disabilities and their family carers to plan for their futures.

Background: Adults with an intellectual disability (ID) have much lower rates of employment than their counterparts without intellectual disability, which increases their risk of poverty and social exclusion. Differential treatment of people with intellectual disability in welfare and training policies suggests an expectation they will be passive welfare recipients rather than productive employees. Methods: This paper aims to examine occupational activities by older people with intellectual disability in Ireland, exploring factors influencing outcomes using data from the IDS-TILDA study (n = 708). Results: Most people were unemployed but engaged in regular occupational activity. Occupational activity was associated with better emotional/mental health. Activities of Daily Living (ADL) functioning was associated with an active occupational status, while social supports most strongly predicted high occupational engagement across a range of activities. Conclusions: A focus on the individual meaning derived from a broad range of engagement may better support people with intellectual disabilities to benefit from regular occupational activity.

Background: Transport is an important basis for social participation. Challenges to accessing and using transport for people with intellectual disabilities increase their risk of exclusion and loneliness. Method: Data from a nationally representative study of older people with intellectual disabilities (n = 708) were used to examine longitudinal changes in transport usage and factors associated with using public transport and other travel options. Results: Findings confirmed that this population depends on others for transportation. The most frequently used mode, staff-supported transport, showed no significant longitudinal change. Public transport was secondary, with only moderate continued use between data collection points. Level of intellectual disability most strongly predicted public transport use, while community residence most strongly predicted using public transport to attend work or day programmes. Conclusions: Transport usage is associated with demand and supply factors linked to the person's environment, including having somewhere to go that requires transport and availability of transport options.

A better understanding of how communication-based behaviour supports are applied with adults with intellectual disabilities may reduce reliance on restrictive practices such as holding, sedation and anaesthesia in dentistry. In this study, we explore how communication is used by dentists who provide treatment for adults with intellectual disabilities. A descriptive qualitative study, adopting synchronous online focus groups, was undertaken with six expert dentists in Ireland. Members were contacted again in pairs or individually for further data collection, analysed using thematic content analysis. Two relevant categories emerged from the data, relating to the selection and application of communication-based behaviour support for adults with intellectual disabilities. Decision-making processes were explored. Building on these categories, a co-regulating process of communication emerged as the means by which dentists iteratively apply and adapt communicative strategies. This exploration revealed rationalist and intuitive decision-making. Implications for education, practice and research are identified.

Most people with intellectual disabilities (IDs) live at home with family, and most carers and care recipients wish to continue this arrangement. However, despite worry about what will happen when carers are unable to continue caring, most families do not plan for the future. The "Future Care Road Map" (FCRM) pilot study sought to enhance future care planning for families of adults with ID. Twelve families were facilitated through the FCRM process to establish future care plans, including future living and care arrangements. The pilot successfully improved future planning, but readiness of families and facilitation were important to outcomes. Continued care within the family was the most common future wish of care recipients. However, caring capacity emerged as a pervasive theme. Ultimately, it may be the capacity of the family, services or individual with ID themselves to provide future care which determines how feasibly future wishes translate into future plans.

Background: Constipation impacts health-related quality of life with a burden similar to other chronic conditions. This study characterises the prevalence of constipation and its associated factors in older adults with intellectual disability. Methods: Data from the Intellectual Disability Supplement of The Irish Longitudinal Study on Ageing was analysed using bivariate and multivariate approaches. Results: Constipation affected 43.5% of this cohort and was more common in females, those in residential settings, and those with a severe/profound level of intellectual disability. The type of residence, level of intellectual disability, a low fat diet, high cholesterol, multimorbidity and, physical activity predicted constipation status with 67.7% accuracy. Physical activity was associated with lower constipation prevalence, where minimal activity was sufficient to observe this effect. Conclusions: Constipation is a common health concern in older people with intellectual disability. This analysis reveals characteristics that should inform the careful monitoring of bowel health in this population. [ABSTRACT FROM AUTHOR]

Background: While higher rates and earlier onset of frailty have been reported among adults with intellectual and developmental disabilities (IDD), research on how best to support these individuals is lacking. Method: An international consultation relied on three consensus building methods--the Nominal Group Technique, an NIH consensus conference approach, and a Delphi survey. Results: There is agreement that person-centered planning and aging in place should be guiding principles. Frailty must be considered earlier than in the general population with the recognition that improvement and maintenance are viable goals. Intersectoral collaboration is needed to coordinate assessments and actions. Safety and planning for the future are important planning considerations, as are the needs of caregivers. Ongoing research is needed. Conclusion: The statement offers guidance to respond to frailty among adults with IDD and fosters ongoing exchange internationally on best practice. As new evidence emerges, the statement should be revisited and revised.

In this article, the author describes how to bring Paulo Freire (or his ideas) into a learning group that visits the Botanic Gardens as part of a horticultural course and how her experiences at an art exhibition on two different occasions (both in Ireland and Sweden) impacted on her work as a teacher. As a result of working with students and teaching them in the garden, engaging with them on different field trips and reflecting on these and her own personal expeditions, the author has developed a personal sense of connection with the world. In hindsight from re-examination of the academic subject and herself, she has learned that horticulture opens up many possible avenues of discussion with the students. In fact the subject is an opportunity to learn about the environment and the preservation of the world that is central to one's survival. The author stresses that through adult education there are opportunities for educators to take responsibility for their world and how they live and to convince others that they can do the same.

Background: The UN Convention on the Rights of Persons with Disabilities (CRPD) provides the benchmark for assessing human rights and citizenship for people with disabilities. This emphasises autonomy, choice, independence, equality and participation for individuals as its fundamental guiding principles. Methods: This paper explores the exercise of human rights and citizenship for older adults with intellectual disabilities (ID) in Ireland, including choice-making, advocacy and political participation. Cross-sectional data (n = 701) is drawn from wave 2 of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing. Rates of participation are reported, along with bivariate associations across a range of demographic, personal and social variables, while factors associated with level of choice-making and voting are explored. Results: We found very low rates of choice-making, advocacy and political participation amongst this population. Two factors of choice were explored: "key life choice" and "everyday choice." Some commonalities were identified between the two factors, yet key differences were also noted. Type of residence was the strongest predictor of key life choice yet not significant in everyday choice, while the reverse was true for functioning in activities of daily living. Other factors were also significant in determining choice, including level of ID, contact with family, functional limitation, literacy, age, having friends and respondent type. Conclusions: Low rates of participation reported here impinge on the rights of older adults with ID under the principles of the UN CRPD. Choice-making emerged as a multi-factorial phenomenon, with different factors important depending on the type of choice involved. This encourages a nuanced and personalised response from policy and support services to overcome individual challenges to participation as equal citizens. The significance of respondent type also highlights the difficulty of including self-report, supported and proxy participants in ID research.

Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, deinstitutionalization and policy prioritization of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing. Results: The traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out-of-family home care. Conclusion: To anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families, to facilitate the early formation of long-term care plans.

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.