An exploration into self-reported inactivity behaviours of adults with an intellectual disability using physical activity questionnaires.

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.

Drug burden index of people ageing with intellectual disability and cognitive complaints attending a specialist memory service.

BACKGROUND: Medications with sedative or anticholinergic properties should be prescribed with caution in those with cognitive complaints. This is particularly relevant in people ageing with an intellectual disability (ID). Higher drug burden index (DBI) scores are associated with increased frailty and falls and reduced quality of life in older people and increased risk of adverse effects (daytime somnolence, constipation) in those with ID. While previous studies have shown that the ID population has higher rates of drug burden and a higher propensity to be prescribed an antipsychotic than the general population, the degree of burden has not been assessed specifically in those with ID and cognitive complaints. METHODS: We assessed drug burden in a cohort of sequential referrals to a national memory service for people with ID. All patients were referred for assessment of cognitive complaints (self-reported or caregiver-reported problems with memory or cognition). DBI was calculated individually for each participant, and the impact of aetiology of ID, level of ID, age, psychiatric/neurological comorbidities and diagnostic outcome on DBI scores was assessed. RESULTS: The study population was 58.6% female with a median age of 55 years and aetiology of ID was Down syndrome (DS) in 71.3%. Consensus diagnosis was Alzheimer's dementia in 40.2%, mild cognitive impairment in 29.9% and cognitively unimpaired from baseline in 25.3%. Medication use was high with 95.4% taking medications, with a median number of medications of 4 (interquartile range 4) and a rate of polypharmacy (≥5 medications) of 51.7%. Overall, 65.5% were exposed to sedative or anticholinergic medications with 39.1% exposed to a clinically significant DBI score >1. Those with psychiatric comorbidities, non-DS aetiology or epilepsy were significantly more likely to have a DBI score >1. CONCLUSIONS: People with ID and incipient cognitive complaints have a high level of drug burden, which concerningly exceeds that of the general population.

Perceptions of mental health and utilization of mental health services among new immigrants in Canada: A qualitative study.

The impact of immigration on individuals' overall health, including mental health, is complex. New immigrants' concepts of mental health, mental healthcare utilization, and their knowledge of existing services in Regina, Canada were explored using a hermeneutic phenomenological approach. Three focus groups were conducted with 37 participants recruited from English language classes provided by a non-governmental organization in the city. Irrespective of country of origin, participants recognized the impact of mental health on general wellbeing. Access to existing mental healthcare was hindered by language barriers, inadequate information about existing healthcare services, and individuals' perceptions about what and when services should be accessed. Despite challenges, participants viewed relocation positively and exhibited resilience when dealing with daily stress. Participants had knowledge gaps surrounding the role of family physicians in managing mental health conditions. Information on ways to access existing healthcare services should be delivered in collaboration with community organizations serving new immigrants.

The impact of COVID-19 on the social inclusion of older adults with an intellectual disability during the first wave of the pandemic in Ireland.

BACKGROUND: Social restrictions and service closures from COVID-19 have negatively impacted social inclusion and well-being for some people with intellectual disabilities (IDs). METHODS: The fourth wave of a national longitudinal study on ageing in people with ID in Ireland was interrupted during the COVID-19 outbreak. Social inclusion data for pre-existing participants interviewed before COVID-19 (n = 444) were compared with data for pre-existing participants interviewed during/after lockdown (n = 62). RESULTS: More people interviewed after lockdown reported frequent family contact. Significantly greater numbers in the post-lockdown group reported access to and use of technology than the pre-lockdown group. Technology use was higher among those living in grouped residences supported by services compared with individuals living independently or with family. CONCLUSIONS: During the early stages of the COVID-19 pandemic in Ireland, many older adults with ID stayed connected with family and reported rates of contact higher than were reported by others before COVID-19. This connection may have been supported by a significant increase in technology use during the pandemic. However, uneven use of technology may disadvantage some including individuals living with family or independently. Given that COVID-19 restrictions are likely to continue to restrict social opportunities, increased digital support may assist more people with ID to use technology to maintain their social connections.

Overweight/obesity and chronic health conditions in older people with intellectual disability in Ireland.

BACKGROUND: This study examines overweight/obesity and chronic health conditions (CHCs) in older people with intellectual disability (ID). METHODS: Data for this cross-sectional observational study emanated from Wave 2 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, a longitudinal study assessing the health and well-being of older Irish adults with ID aged ≥40 years across all levels of ID. Participation involves an interview process and collation of objective health measures. In this study, body mass index (BMI) (n = 572), used as a measure of weight status, was examined with clustered doctor's diagnosed CHCs. Descriptive analysis was conducted where counts (n) and proportions (%) were used to summarise the variables univariately, while cross-tabulations were used for bivariate summary into counts and proportions. With overweight/obesity prevalence established and patterns described using logistical regression, Pearson's chi-squared test was used to test for significant associations. RESULTS: Overweight/obesity identified in 69% of participants occurred with greater frequency in women (72%). A higher percentage of participants aged <50 years (72.5%) were overweight/obese than those aged 50-64 (70%) and 65+ (61.4%). Level of ID and residence type were significantly associated with weight status (P < 0.001), with overweight/obesity more prevalent in mild (85.7%) than moderate (72%) or severe/profound ID (51.4%). Of those who lived independently/with family, 78.4% were overweight/obese, as were 74% living in a community group home (P < 0.001). Almost all overweight/obese participants' waist measurements were in the substantially increased risk of metabolic disease waist measurement category (92%, P < 0.001). Logistical regression used to model CHCs on BMI showed significant association between BMI and gastrointestinal tract [odds ratio (OR) = 0.57, P < 0.008, 95% confidence interval (CI) = (0.37; 0.86)], respiratory condition [OR = 8.95, P < 0.004, 95% CI = (2.57; 56.72)] and musculoskeletal disorders [OR = 0.40, P < 0.001, 95% CI = (0.25; 0.63)]. CONCLUSIONS: The findings illustrate the strong cross-sectional association between overweight/obesity and CHCs. These findings suggest a need to prioritise weight status as a health risk to people with ID as they age.

Biopsychosocial factors associated with depression and anxiety in older adults with intellectual disability: results of the wave 3 Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing.

BACKGROUND: Depression and anxiety are amongst the most prevalent mental health disorders in the older population with intellectual disability (ID). There is a paucity of research that pertains to associative biopsychosocial factors for depression and anxiety in this population. The aim of this study is to determine the biopsychosocial factors associated with depression and anxiety in a population of older adults with ID in Ireland. METHODS: The study was part of 'The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing'. Depressive symptoms were assessed using the Glasgow Depression Scale for people with a Learning Disability. Anxiety symptoms were measured using the Glasgow Anxiety Scale for people with a Learning Disability. The cross-sectional associations of depression and anxiety with biopsychosocial parameters were measured using a variety of self-report and proxy-completed questionnaires. RESULTS: For the study population, 9.97% met the criteria for depression, and 15.12% met the criteria for an anxiety disorder. Participants meeting criteria for depression were more likely to be taking regular mood stabiliser medications and to exhibit aggressive challenging behaviour. Participants meeting criteria for anxiety were more likely to have sleep difficulties and report loneliness. Participants meeting criteria for either/both depression and anxiety were more likely to report loneliness. CONCLUSIONS: This study identified both treatable and modifiable, as well as unmodifiable, biopsychosocial factors associated with depression and/or anxiety in older adults with ID. A longitudinal study follow-up will further develop our knowledge on the causality and direction of associated biopsychosocial factors with depression and anxiety in older adults with ID and better inform management strategies, prevention policies and funding of services.

Examining the effects of computerised cognitive training on levels of executive function in adults with Down syndrome.

BACKGROUND: Individuals with Down syndrome (DS) are at much greater risk of developing Alzheimer's disease, and one of the early clinical symptoms of Alzheimer's disease is executive dysfunction. In the general population, cognitive training has shown some promising results in relation to maintaining or improving cognitive processes. There is currently a gap in the literature in relation to cognitive training for adults with DS. METHODS: A quasi-experimental mixed factorial design with partial crossover was used involving an 8-week intervention period using a brain training programme. Participants were matched on age and then randomly assigned to either the intervention group or the delayed intervention group. Forty adults with DS, aged between 30 and 49 and with a mild or moderate level of intellectual disability, participated in the study. All participants completed baseline measures of executive function, using both neuropsychological assessments and an informant-rated measure of behavioural executive function. The intervention group first completed the training and then the delayed intervention group. Executive function assessments were repeated for both groups following the training. RESULTS: The study aimed to examine whether a cognitive training programme could have an effect on levels of executive function. While conclusions are limited owing to small sample size, improvement was seen in neuropsychological assessments of executive function following cognitive training. Positive effects reflected in everyday behaviours were not as promising. CONCLUSIONS: This study showed that, while it has not been previously an area of focus, individuals with DS can complete a computerised cognitive training programme. Furthermore, the results were promising with significant improvements found in neuropsychological assessments of executive function. These findings need further investigation with a larger sample size and would benefit from the use of a brain imaging component to strengthen the findings.

The association of life events and mental ill health in older adults with intellectual disability: results of the wave 3 Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing.

BACKGROUND: Exposures to life events are associated with emotional, psychological and behavioural problems in those with intellectual disability (ID). Older adults with ID may experience different life events given differences in living circumstances, cognitive decline, greater dependency on others and less autonomy. This study examines the relationship of life events and mental ill health in an older ID population in Ireland. METHODS: The study was part of 'The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing'. The frequency of life events was assessed using a 20-item checklist, and the level of stress experienced was assessed using a three-point Likert scale measuring the burden of the life event. The associations of life events with factors associated with mental ill health were measured using a variety of self-report and proxy completed questionnaires. RESULTS: For the study population, 88.1% had been exposed to at least one life event in the preceding 12 months and 64.5% to two or more life events. Frequency and burden of life events were significantly higher in individuals living in institutional settings and in individuals with any current psychiatric condition, increased depressive and anxiety symptoms, challenging behaviour and reported poorer self-rated mental and physical health. More life events were significantly associated with new psychiatric diagnoses as well as initiation and increased dosage of mood stabilising, hypnotic and sedative medications. CONCLUSIONS: Life events are significantly associated with mental ill health in the older ID population. Service providers must focus on limiting the exposure to these events and, in situations where they cannot be avoided, should support and manage individuals compassionately and effectively, prioritising their mental and physical well-being.

Meta-analysis and systematic review of population-based epidemiological studies in idiopathic intracranial hypertension.

Idiopathic intracranial hypertension (IIH) is positively associated with obesity, mostly in young women. The global increase in obesity may influence the burden of IIH. Using the PubMed, Embase, MEDLINE and Web of Science databases, a meta-analysis and systematic review of epidemiological studies of IIH were performed up to June 2017. Temporal changes in IIH incidence were measured, and incidence rates of IIH were correlated with country-specific World Health Organization obesity rates. Prevalence data and shunting rates of IIH were recorded. The quality of epidemiological studies was assessed using the Standards of Reporting of Neurological Disorders (STROND) criteria. In 15 identified studies, there were 889 patients (87% women), mean age 29.8 years. The incidence of IIH ranged from 0.03 to 2.36 per 100 000 per year. The pooled incidence of IIH was 1.20 per 100 000 per year although there was very high heterogeneity (I2 98%). The incidence rates of IIH were correlated with country-specific prevalence of obesity (Spearman's correlation 0.82, P < 0.01). The prevalence of IIH was rarely recorded. A shunting procedure was reported in 8% of patients. STROND criteria were variably reported, median of 26.5 of 43 (range 16-35). IIH is a public health concern as increased obesity prevalence is associated with increased incidence of IIH. A better quality of epidemiological studies is required to improve understanding of IIH and inform health policy for IIH management.

The exercise of human rights and citizenship by older adults with an intellectual disability in Ireland.

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.

Prevalence and patterns of anti-epileptic medication prescribing in the treatment of epilepsy in older adults with intellectual disabilities.

BACKGROUND: The prevalence of epilepsy is higher in people with intellectual disability (ID) and increases with the degree of ID. Although life expectancy for people with ID is increasing, people with ID coexisting with epilepsy have a higher mortality rate, particularly those who had recent seizures. There have been few observational studies of the prevalence and patterns of anti-epileptic prescribing among older people with ID and epilepsy. The aim of this study was to investigate prevalence and patterns of anti-epileptic prescribing in the treatment of epilepsy in a representative population of older people with ID and epilepsy. METHODS: This was an observational cross-sectional study from wave 1 (2009/2010) of Intellectual Disability Supplement to the Irish Longitudinal Study on Aging, a nationally representative sample of 753 persons with ID aged between 41 and 90 years. Participants and/or proxies recorded medicines used on a regular basis and reported doctor's diagnosis of epilepsy; medication data were available for 736 (98%). Prescribing of anti-epileptic drugs (AEDs) for epilepsy in those with a doctor's diagnosis of epilepsy (N = 205) was the primary exposure of interest for this study. Participant exposure to these AEDs was then categorised into AED monotherapy and polytherapy. Participants/carers reported seizure frequency, when epilepsy was last reviewed and which practitioner reviewed epilepsy. In addition, medications that may lower the seizure threshold that were listed in the Maudsley prescribing guidelines in psychiatry were examined. RESULTS: Of the 736 participants with reported medicines use, 38.9% (n = 287) were exposed to AEDs, and 30.6% (225) had a doctor's diagnosis of epilepsy. Of those with epilepsy (n = 225), 90.9% (n = 205) reported concurrent use of AEDs and epilepsy. Of these 205 participants, 50.3% (n = 103) were exposed to AED polytherapy, and 63 different polytherapy regimes were reported. The most frequently reported AEDs were valproic acid (n = 100, 48.7%), carbamazepine (n = 89, 46.3%) and lamotrigine (n = 57, 27.8%). In total, 13.7% had a concurrent psychotropic, which should be avoided in epilepsy, and 32.6% had a psychotropic where caution is required. Antipsychotics with potential epileptogenic potential accounted for 80% of these medications. Of those with AED polytherapy (n = 103), 29.5% (28) reported being seizure free for the previous 2 years. CONCLUSIONS: Prevalence of epilepsy was high among older people with ID, and half were exposed to two or more AEDs. Despite the use of AED therapy, over half had seizures in the previous 2 years. As the primary goals of optimal AED treatment are to achieve seizure freedom without unacceptable adverse effects, this was not achievable for many older patients with ID and epilepsy. Our findings indicated that people with ID and epilepsy were often exposed to psychotropic medications that may lower the seizure threshold. Regular review of epilepsy and medicines (including medicines that may interact with AEDs or lower the seizure threshold) by multidisciplinary teams working to agreed standards may improve quality of prescribing. Improved exchange of information and coordination of care between specialists and primary care practitioners in line with expert consensus recommendations could bring substantial benefit.

Supporting advanced dementia in people with Down syndrome and other intellectual disability: consensus statement of the International Summit on Intellectual Disability and Dementia.

BACKGROUND: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorised as that stage of dementia progression characterised by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. METHOD: The question before the Summit was whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. RESULTS: The Summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre-existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the Summit agreed that as was true in achieving diagnosis, it is also imperative in determining advanced dementia that change is measured from the person's prior functioning in combination with clinical impressions of continuing and marked decline and of increasing co-morbidity, including particular attention to late-onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognise the greater likelihood of physical symptoms, co-morbidities, immobility and neuropathological deterioration. CONCLUSIONS: The Summit recommended an investment in research to more clearly identify measures of person-specific additional decline for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers and identify specific markers that signal such additional decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment.

Measuring choice for adults with an intellectual disability - a factor analysis of the adapted daily choice inventory scale.

BACKGROUND: For most people, choice making is an everyday occurrence, but for adults with an intellectual disability (ID), such opportunities are often limited, if not, absent. Defining choice, and related opportunity capacity and supports continue to feature prominently in academic, practice and policy discourse within the field of ID as reflected in the range of measures available. This paper examines the factor analytic properties of an adapted 14-item choice inventory scale. METHOD: Presence and type of choice were recorded in wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing using a choice inventory scale adapted for the Irish context for 753 participants with ID over age 40 years. Analysis included both an exploratory and confirmatory factor analysis. Descriptive statistics on choice by type of living arrangement, type of interview (proxy, self or supported) and level of ID are presented. RESULTS: Exploratory factor analysis indicates good model fit when using both a 3-item and 4-item response with the 4-item version suggesting a two-factor model. Further exploration of this two-factor model through confirmatory factor analysis highlighted an improved fit for the 4-item model. Further improvement in model fit is found when four item pairs are co-varied within the model. CONCLUSION: Two broad types of choice were found to exist for adults with ID - everyday decisions and key life decisions. In addition, the factor analysis support for the inclusion of a 'no choice' response may help reduce the potential for missing data.

An exploration of the bone health of older adults with an intellectual disability in Ireland.

BACKGROUND: Many risk factors have been confirmed for poor bone health among the general population including age, gender and corticosteroid use. There is a paucity of investigation among people with intellectual disability; however, research points to differing risks namely anti-epileptic medication use, Down syndrome and poor behaviour lifestyle. METHODS: Data was extracted from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing in Ireland. In total, 753 participants took part, and data was gathered on participants' health status, behavioural health, health screenings and activities of daily living. The prevalence of osteoporosis and related risk factors were specifically examined. RESULTS: Overall, 8.1% reported a doctor's diagnosis of osteoporosis with over 20% reporting history of fracture. Risk identified included older age (P < 0.0001), female gender (P < 0.0001), difficulty walking (P < 0.0001) with older age and being female the stronger predictors for osteoporosis, odds ratio = 6.53; 95% confidence interval 2.82-15.11 and odds ratio = 4.58; 95% confidence interval 2.29-9.17, respectively. There was no gender difference regarding the level of fractures; however, epilepsy and anti-epileptic medication were strong predictors. Overall, 11.1% attended for bone screening diagnostics. CONCLUSION: Despite low levels of reported doctor's diagnosis of osteoporosis risk factor prevalence was high. Considering the insidious nature of osteoporosis and the low levels of diagnostic screening, prevalence could be possibly higher.

Prevalence, patterns and factors associated with psychotropic use in older adults with intellectual disabilities in Ireland.

BACKGROUND: People with intellectual disability (ID) are at increased risk of exposure to psychotropic drugs and psychotropic polypharmacy because of the higher prevalence of mental health conditions present and more controversially, the use of these agents to treat challenging behaviours. Despite the fact that many adults with ID are exposed to psychotropic polypharmacy, few studies to date have focused on the patterns of use of multiple psychotropics, or factors associated with psychotropic polypharmacy, particularly in the older population. This study aims to examine the prevalence, patterns and factors associated with psychotropic use in general and psychotropic polypharmacy in particular in a representative sample of ageing people with ID. METHODS: This was an observational cross-sectional study from Wave 1 of Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing; a nationally representative sample of 753 persons with ID aged between 41 and 90 years. Participants/proxy reported medicines (prescription and over the counter) taken on a regular basis; medication data were available for 736 participants (98%). Participants were divided into those with no psychotropic exposure, exposure to 1 psychotropic and psychotropic polypharmacy (2+ psychotropics). Patterns of psychotropic use were analysed. A multinomial logistic regression model identified factors associated with use of 1 psychotropic and psychotropic polypharmacy. RESULTS: Overall, 59.1% (436) of the sample was exposed to any psychotropic; of these, 66.2% reported psychotropic polypharmacy. Antipsychotics were the most frequently reported psychotropic class by 43% of the sample. Living in a residential institution and having a history of reporting a mental health condition or sleep problems were associated with psychotropic polypharmacy after adjusting for confounders, while those with epilepsy were less likely to experience exposure to polypharmacy, but age, gender had no significant effect. CONCLUSIONS: Psychotropic use and polypharmacy were commonplace for older adults with ID. Psychotropic use, particularly the use of psychotropic combinations, needs to be regularly reviewed for safety, efficacy and adverse effects, and rationale for use of multiple agents needs to be clear and documented.

A prospective 20-year longitudinal follow-up of dementia in persons with Down syndrome.

GOAL: To examine dementia characteristics, age at onset and associated co-morbidities in persons with Down syndrome. METHOD: A total of 77 people with Down syndrome aged 35 years and older were followed up from 1996 to 2015. The diagnosis of dementia was established using the modified ICD 10 Criteria and a combination of objective and informant-based tests. Cognitive tests included the Test for Severe Impairment and the Down Syndrome Mental Status Examination; adaptive behaviour was measured using the Daily Living Skills Questionnaire, and data from the Dementia Questionnaire for People with Intellectual Disabilities have been available since 2005. RESULTS: Over the 20-year period, 97.4% (75 of 77) persons developed dementia with a mean age of dementia diagnosis of 55 years (SD = 7.1, median = 56 years). Clinical dementia was associated with cognitive and function decline and seizure activity. Risk for dementia increased from 23% in those aged 50 years to 80% in those aged 65 years and above. There were no differences by level of ID. CONCLUSION: The previously reported high risk levels for dementia among people with Down syndrome were confirmed in this data as was the relationship with late onset epilepsy. The value of the instruments utilised in tracking decline and helping to confirm diagnosis is further highlighted.

Impact of social prescribing on general practice workload and polypharmacy.

OBJECTIVES: Social prescribing has emerged as a useful tool for helping patients overcome some of the social and behavioural determinants of poor health. There has been little research on the impact of social prescribing on use of primary healthcare resources. This study sought to determine whether social prescribing activities influenced patient-general practitioner (GP) contacts and polypharmacy. STUDY DESIGN: Quality-improvement design with social prescribing activity interventions from an urban general practice in Northern Ireland. METHODS: Patients over 65 years of age with a chronic condition who attended their GP frequently or had multiple medications were offered a social prescribing activity. Participants' contacts with GP and the new repeat prescriptions before and during the social prescribing activity were measured. The total number of repeat prescriptions per patient was compared at the time of referral and 6-12 months later. Indications for referral, primary diagnoses and reasons for declining participation in a social prescribing activity after referral were prospectively recorded. RESULTS: Sixty-eight patients agreed to participate but only 28 (41%) engaged in a prescribed social activity. There was no statistically significant difference in GP contacts (visits to GP, home visits or telephone calls) or number of new repeat prescriptions between referral and completion of 12 weeks of social prescribing activity. Similarly there was no statistically significant difference in the total number of repeat prescriptions between referral and 6-12 months after social prescribing activity in either intention to treat or per protocol analyses. Social prescribing participants had similar demographic factors. Mental health issues (anxiety and/or depression) were more common among participants than those who were referred but declined participation in a social prescribing activity (P = 0.022). CONCLUSIONS: While social prescribing may help patients' self-esteem and well-being, it may not decrease GP workload. Further research is required to optimise social prescribing benefits.

Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.

BACKGROUND: Empirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe. METHODS: A two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance. RESULTS: A total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities. CONCLUSIONS: The proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.

Parental decision-making on utilisation of out-of-home respite in children's palliative care: findings of qualitative case study research - a proposed new model.

BACKGROUND: Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the child's age, diagnosis, geographical location and the family's capacity to meet their child's care needs. A proposed model for out-of-home respite has been developed based on the findings of qualitative case study research. METHODS: Utilising multiple, longitudinal, qualitative case study design, the respite needs and experiences of parents caring for a child with a life-limiting condition were explored. Multiple, in-depth interviews were undertaken with the parents identified by a hospital-based children's palliative care team. Data were analysed using thematic analysis. Each individual case consists of a whole study. Cross-case comparison was also conducted. RESULTS: Nine families were recruited and followed for two years. A total of 19 in-depth interviews were conducted with mothers and fathers (one or both) caring for a child with a life-limiting condition in Ireland. Each family reported vastly different needs and experiences of respite from their own unique perspective. Cross-case comparison showed that for all parents utilising respite care, regardless of their child's age and condition, home was the location of choice. Many interlinking factors influencing these decisions included: past experience of in-patient care, and trust and confidence in care providers. Issues were raised regarding the impact of care provision in the home on family life, siblings and the concept of home. CONCLUSION: Respite is an essential element of children's palliative care. Utilisation of out-of-home respite is heavily dependent on a number of interlinked and intertwined factors. The proposed model of care offers an opportunity to identify how these decisions are made and may ultimately assist in identifying the elements of responsive and family-focused respite that are important to families of children with life-limiting conditions.