Service providers' perceptions of active ageing among older adults with lifelong intellectual disabilities

Background: Considerable attention is currently being directed towards both active ageing and the revising of standards for disability services within Australia and internationally. Yet, to date, no consideration appears to have been given to ways to promote active ageing among older adults with intellectual disabilities. Methods: Semi-structured interviews were conducted with 16 Australian professional direct-care support staff (service providers) about their perceptions of ageing among older adults with lifelong intellectual disabilities and what active ageing might entail for an individual from this population who is currently under their care, in both the present and future. Data were analysed against the six core World Health Organization active ageing outcomes for people with intellectual disabilities. Results: Service providers appeared to be strongly focused on encouraging active ageing among their clients. However, their perceptions of the individual characteristics, circumstances and experiences of older adults with intellectual disabilities for whom they care suggest that active ageing principles need to be applied to this group in a way that considers both their individual and diverse needs, particularly with respect to them transitioning from day services, employment or voluntary work to reduced activity, and finally to aged care facilities. The appropriateness of this group being placed in nursing homes in old age was also questioned. Conclusion: Direct-care staff of older adults with intellectual disabilities have a vital role to play in encouraging and facilitating active ageing, as well as informing strategies that need to be implemented to ensure appropriate care for this diverse group as they proceed to old age.

The doctrine of necessity and the detention and restraint of people with intellectual impairment: Is there any justification?

In Australia, the legal basis for the detention and restraint of people with intellectual impairment is ad hoc and unclear. There is no comprehensive legal framework that authorises and regulates the detention of, for example, older people with dementia in locked wards or in residential aged care, people with disability in residential services or people with acquired brain injury in hospital and rehabilitation services. This paper focuses on whether the common law doctrine of necessity (or its statutory equivalents) should have a role in permitting the detention and restraint of people with disabilities. Traditionally, the defence of necessity has been recognised as an excuse, where the defendant, faced by a situation of imminent peril, is excused from the criminal or civil liability because of the extraordinary circumstances they find themselves in. In the United Kingdom, however, in In re F (Mental Patient: Sterilisation) and R v Bournewood Community and Mental Health NHS Trust, ex parte L, the House of Lords broadened the defence so that it operated as a justification for treatment, detention and restraint outside of the emergency context. This paper outlines the distinction between necessity as an excuse and as a defence, and identifies a number of concerns with the latter formulation: problems of democracy, integrity, obedience, objectivity and safeguards. Australian courts are urged to reject the United Kingdom approach and retain an excuse-based defence, as the risks of permitting the essentially utilitarian model of necessity as a justification are too great.

A journey access tool to facilitate better health outcomes for people with disabilities

- Background One of the three objectives of the WHO Global Disability Action Plan 2014–2021 is removal of barriers and improved access to health services and programmes. Access to transport contributes to positive health outcomes; however, people with disabilities leaving their dwellings are confronted with barriers to their mobility. Mobility restrictions, sensory or other disabilities increase their vulnerability as road users, exposing them to higher risks of injury. PHSW and CARRS-Q have been collaborating with Handicap International Cambodia (HIC) on a Journey Access Tool (JAT). - Aims Use of the JAT is to (1) Identify transport and journey safety and barriers for people with disability and (2) Evaluation and modification of the tool after trailing to for use by NGOs and government agencies in prioritising actions around barriers. - Methodology The tool has undergone initial proof-of-concept testing in India and Viet Nam, and was trialled in Cambodia in February and May, 2015. Five teams were formed comprising a person with disability (physical, sensory or intellectual), researchers from QUT, staff from HIC, and local university students. The JAT was completed by each team and then discussed and evaluated. Two further Cambodian trials are scheduled for 2015. - Results The JAT is responsive to rural and urban contexts, and has utility for people with different disabilities. Two tools have been developed: a short version for people with a disability to complete independently, or with assistance; and a version for NGOs, DPOs and government. The tool has efficacy for advocacy.   - Conclusion The JAT has potential to assist the Mekong region with: (1) evaluating access for people with disability and other vulnerable members of the community including older people; (2) developing plans for changes to the routes in consultation with local authorities; (3) evaluating the effectiveness of implemented changes in terms of access and health; (4) inputting into policy; (5) The tool can be used for advocacy for change.

“I want to see the Queen” : experiences of service use by ageing people with an intellectual disability

People with intellectual disability are a relatively new but growing minority group within Australia's ageing population. Disability policies point to the equal right of people with disabilities to a quality of life similar to that of other citizens. Disability services are increasingly required to provide individualised and responsive services, irrespective of age, for people with lifelong disabilities. The present study explored the everyday lives of older people with intellectual disability in Victoria and Queensland, examining their experiences of using disability services and the ways in which services responded to their ageing. The aim of the study was to inform practice and service development for older people with intellectual disability. The findings suggest that services facilitate important social relationships with other service users and staff. Most older people had a sense of belonging and led busy but directionless lives in two disconnected worlds. Their lives were subject to significant external present-focused control. Yet, despite this, neither services nor family members took responsibility for ensuring their sense of continuity or supporting the development of plans about their future. The experiences described suggest an urgent need for, but significant challenges in the implementation of, holistic indivdualised planning similar to the UK concept of person-centred planning.

Active ageing among older adults with lifelong intellectual disabilities : the role of familial and nonfamilial social networks

Little research has examined the extent to which active ageing is facilitated by family and nonfamilial support persons of older adults with intellectual disabilities. This study explores the role played by key unpaid carers/support persons of older adults with lifelong intellectual disabilities in facilitating "active ageing." Little research has examined the extent to which active ageing is facilitated by family and nonfamilial support persons of older adults with intellectual disabilities. This study explores the role played by key unpaid carers/support persons of older adults with lifelong intellectual disabilities in facilitating “active ageing.” All key social network members conceived active ageing to mean ongoing activity. Family and extended family members were found to play a crucial role in facilitating independent living and providing opportunities for recreational pursuits for those living in group homes. Members of religious organizations and group home staff provided the same types of opportunities where family support was absent. The findings suggest the need for improvements in resource provision, staff training, and group home policy and building design.

The institutional limits to, and possibility of, understanding young people diagnosed with 'mental disorders', within inclusive teacher-student relationships

A persistent pattern of exclusion of young people with ‘mental disorders’ from school systems, despite the best intentions of schools and teachers, has prompted a call for a more reflexive understanding of their behaviours. This thesis, by describing how institutionally recognised ways of understanding can result in otherwise avoidable moral collisions and exclusion, produces new insights into the nature and processes of understanding required to promote inclusion. These insights were produced through an intensive qualitative examination of a violent classroom episode, identifying key points in the interaction that could make the difference between misrecognition and recognition, turning exclusion into inclusion.

Effective responses to offenders with intellectual disabilities : generalist and specialist services working together

Despite policies of deinstitutionalisation, many people with intellectual disabilities in developed western countries continue to live in mainstream institutional settings, such as correctional facilities, rather than in the community with support from disability services. This paper reports on the life stories of 10 people with intellectual disabilities, who had been imprisoned in adult correctional facilities in Queensland. The pathways taken by these 10 people into and out of prison are marked by significant abuse, neglect, and poverty. Significant disparity and disconnection is also displayed between the policies and service approaches, particularly between the disability, mental health, and correctional systems in Queensland. Based on these findings, a framework for practice, which spans both generic and specialist services, is suggested.

Art and Social Work: an intervention programme for transforming society’s vision to include people with early-onset dementia and Alzheimer’s

This paper presents a program centred on arts and education as tools in social work for the inclusion of people with earlyonset dementia and Alzheimer’s. The objective of the programme is to eradicate the stigma and myths associated with the disease.The program is part of the Junta de Castilla y León and the European Social Fund’s ARS Project (Arte y Salud Alzheimer; Alzheimer’s Art & Health). The programme presents a series of evaluated artistic and educational activities that can be undertaken by people in the early stages of Alzheimer’s disease and that can also be used by caregivers and family when working with this group of people, with the aim of improving their wellbeing, self-esteem and quality of life.

Agency or Dependency?: The Mixed Peppers Theatre Arts Training Project for young people with disabilities

This article provides a reflection on my past practice as Creative Director of The Mixed Peppers Theatre Arts Training Programme. Drawing upon discourses of Disability Studies it considers how this ostensibly emancipatory project that sought to provide access to theatre activity for young people with physical disabilities living in Northern Ireland was flawed, and was eventually disbanded, partly due to a failure on the part of its non-disabled leadership to address imbalances of power in its relationship with its young disabled constituency. The article is framed within a survey of recent debates that focus upon the historical lack of a sustained, indigenous, disability-led theatre activity in Northern Ireland and the recent efforts by non-disabled professional arts practitioners to establish such activity in the region. It offers, as an exemplar to current discussion, an analysis of how the choice and agency of the young members of The Mixed Peppers were compromised by the well-meaning but potentially oppressive practices of its leadership. It questions whether the project was unduly influenced by parental desire to see their disabled children `normalized' in a high-profile theatrical production. Finally, it considers how The Mixed Peppers' institutional situation, as a project controlled and administered by a disability charity, was implicated in the premature demise of the initiative.

Poetry With People With Dementia: An Evaluation of a Two Year Project Engaging in Poetry Activities With Older People in Residential and Nursing Homes.

This paper is a summary of an evaluation of the first two years of a three year poetry project for older people with dementia. The project was set up with a poet in residence who mentored six poets to deliver poetry activities to older people and those with dementia in residential and care homes in Herefordshire. The project was developed and run by the Courtyards Hereford. The evaluation was undertake through the use of questionnaires that were given to staff and carers undertaking training workshops and the poets, staff and carers in the homes who facilitated the activities and finally by the residents who took part in the project. The main findings were that participants that responded to the questionnaire for staff and carers it had increased confidence and assisted them in gaining more knowledge about the residents, whilst for residents it had a number of positive effects including enhanced communication, increased self-esteem and enhanced self-worth whilst making them feel less isolated.

Autonomy Markers in Brazilian Adults With Intellectual Disabilities

The objective of the study was to investigate the relationship between autonomy markers in adult people with intellectual disabilities (ID) and variables such as intelligence quotient (IQ), early aging, and literacy. Participants were 47 adults with ID (33 men; aged 28-58 years with nonspecific etiology, 34 literate). All participants were trainees at the Center for Training of Capacity and Orientation for Employment at Associação de Pais e Amigos dos Excepcionais de São Paulo, São Paulo State, Brazil. They were divided into two age groups: younger (n = 27, mean age 31.85; +/- 2.23), and older (n = 38, mean age 41.84; +/- 5.54). They were administered intelligence scales twice, and answered questions related to social participation, community integration, and choice-making; the percentage of item responses leaning toward self-determination and freedom in choice-making was considered in defining the autonomy score. For both groups, IQ declined from the first to the second assessment. Autonomy scores were more determined by IQ classification than by literacy. Authors concluded that autonomy in people with ID is a multifactorial phenomenon associated with cognitive decline.

Association between indicators of dementia and nutritional status in institutionalised older people

Background and aims. Dementia weakens older people and can lead to malnutrition; therefore, the objective of this study was to assess the association between indicators of dementia and biochemical indicators, anthropometric indicators and food intake in institutionalised older people. Methods. A total of 150 older people of both genders participated in this study. Nutritional status was determined by body mass index and other anthropometric variables, and biochemical indicators were used to analyse the differences between individuals with and without dementia. Energy and nutrient intakes were determined by food records, and dementia was investigated with the Mini-Mental State Examination. The data were analysed by the chi-square test, Student's t-test and Mann-Whitney tests. Results. Of the 150 individuals studied, 48% were men with a mean age of 73±10years and 52% were women with a mean age of 80±9years. Thirty-six per cent had some degree of malnutrition and 48% presented dementia, which was more prevalent in women (59%). The nutritional status of men and women individuals with and without dementia differed significantly (P<0.001 for men and women). The only variables that presented a significant difference between individuals with and without dementia were those associated with muscle mass in men. There were no differences in energy and nutrient intakes between individuals with and without dementia except for vitamin C intake, which differed among women (P=0.032). Conclusion. In the conditions of the present study, dementia was associated with nutritional status, but not with energy and nutrient intakes, suggesting that older people with dementia may have higher nutritional requirements. Implications for practice. Investigation of dementia may contribute to the nutritional status assessment of older people and energy expenditure and immobility should be investigated for a more complete assessment. © 2012 Blackwell Publishing Ltd.

Work-related self-efficacy among community residents with psychiatric disabilities

A new measure of work-related self-efficacy for people with psychiatric disabilities is reported. The 37-item scale measures self-efficacy in four relevant activity domains: 1) vocational service access and career planning, 2) job acquisition, 3) work-related social skills, and 4) general work skills. The scale was developed in a 12-month longitudinal survey of urban residents diagnosed with schizophrenia or schizoaffective disorder (n = 104). Results indicate validity of both a four-factor structure differentiating four core skill domains, and a single factor representing total work-related self-efficacy. The favorable psychometric properties support further research and trial applications in supported employment and psychiatric vocational rehabilitation.

The impact of residential respite care on the behavior of older people

Background: The aim of this study was to examine the impact of residential respite care on disruptive behavior displayed by older people, particularly those with dementia. Methods: A quasi-experimental, repeated-measures, single-group design was used. The participants were a consecutive series of 100 older people with a mean age of 81.8 years (range 66-96 years) who had been booked for a respite admission to one of several residential aged care facilities in a provincial Australian city. A diagnosis of dementia was reported for 29% of the sample. Disruptive behaviors were rated before and after the period of respite by home caregivers (N = 100) and during the period of respite by nurses (N= 25) using the Dementia Behavior Disturbance Scale (DBDS). Results: Age, male gender and the presence of dementia were all significantly related to the frequency of reported disruptive behaviors. Residential respite care was associated with a significant reduction in the frequency of reported disruptive behaviors in older people (Wald chi(2) = 28.28, P < 0.0001). However, this improvement in behavior did not persist into the post-respite period. The deteriorating behavioral trajectory that was evident prior to respite care continued following the period of respite care. Conclusions: Residential respite care was associated with a temporary diminution in the frequency of reported disruptive behaviors in older people. This finding should be reassuring both for family carets considering placing a relative in residential respite care and for health workers considering whether to recommend such a course of action.

Anticholinergic burden in older adults with intellectual disability; relationships with multimorbidity and adverse effects

Background: Anticholinergic medications may be associated with adverse clinical outcomes, including acute impairments in cognition and anticholinergic side effects, the risk of adverse outcomes increasing with increasing anticholinergic exposure. Older people with intellectual disability may be at increased risk of exposure to anticholinergic medicines due to their higher prevalence of comorbidities. We sought to determine anticholinergic burden in ageing people with intellectual disability. Methods: Medication data (self-report/proxy-report) was drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a study on the ageing of 753nationally representative people with an IDC40 years randomly selected from the National Intellectual Disability Database. Each individual’s cumulative exposure to anticholinergic medications was calculated using the Anticholinergic Cognitive Burden Scale (ACB) amended by a multi-disciplinary group with independent advice to account for the range of medicines in use in this population. Results: Overall, 70.1 % (527) reported taking medications with possible or definite anticholinergic properties (ACBC1), with a mean (±SD) ACB score of 4.5 (±3.0) (maximum 16). Of those reporting anticholinergic exposure (n=527), 41.3 % (217) reported an ACB score o fC5. Antipsychotics accounted for 36.4 % of the total cumulative ACB score followed by anticholinergics (16 %) and antidepressants (10.8 %). The most frequently reported medicine with anticholinergic activity was carbamazepine 16.8 % (127). The most frequently reported medicine with high anticholinergic activity (ACB 3) was olanzapine13.4 % (101). There was a significant association between higher anti-cholinergic exposure and multimorbidity, particularly mental health morbidity, and some anticholinergic adverse effects such as constipation and day-time drowsiness but not self-rated health. Conclusion: Using simple cumulative measures proved an effective means to capture total burden and helped establish that anticholinergic exposure in the study population was high. The finding highlights the need for comprehensive reviews of medications.