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This paper aims to underline the importance of using a collaborative approach when designing and adapting a post diagnostic psychosocial intervention of cognitive stimulation therapy (CST) for people with intellectual disability and dementia.

As part of a service improvement, a manual of CST was adapted, for delivery in clinical practice. A qualitative co-production method allowed participants with a lived experience to provide regular feedback relating to the development of the adapted CST manual and intervention programme. This feedback was used to make continual development changes to the CST manual.

The study demonstrated co-production with those who provide care is valuable in adapting psychosocial therapies for people with an intellectual disability and dementia. Additional findings identified the need for carer education in ageing, dementia care and the physical health needs for older people with intellectual disability.

To the best of the authors’ knowledge, this is the first study that has used a co-production approach with families and carers in adapting a group therapy programme for people with an intellectual disability. This paper underlines the need for post diagnostic clinical interventions for people with dementia and those who provide care.

People with intellectual disability die prematurely and from avoidable causes. Innovative solutions and proactive strategies have been limited in addressing this disparity. This paper aims to detail the process of developing a risk stratification tool to identify those individuals who are higher risk of premature mortality.

This study used population health management principles to conceptualise a risk stratification tool for avoidable deaths in people with intellectual disability. A review of the literature examined the existing evidence of causes of death in people with intellectual disability. A qualitative methodology using focused groups of specialist clinicians was used to understand the factors that contributed towards avoidable deaths in people with intellectual disability. Delphi groups were used for consensus on the variables for inclusion in the risk stratification tool (Decision Support Tool for Physical Health).

A pilot of the Decision Support Tool for Physical Health within specialist intellectual disability service demonstrated effective utility and acceptability in clinical practice. The tool has also demonstrated good face and construct validity. A further study is currently being completed to examine concurrent and predictive validity of the tool.

To the best of the authors’ knowledge, this is the only study that has used a systematic approach to designing a risk stratification tool for identifying premature mortality in people with intellectual disability. The Decision Support Tool for Physical Health in clinical practice aims to guide clinical responses and prioritise those identified as at higher risk of avoidable deaths.

This preliminary study aims to examine the use of a co-designed immersive virtual reality intervention programme in improving access to health care for people with intellectual disability.

A co-production approach was used to design a virtual reality intervention in collaboration with people with intellectual disability, their families and carers. A mixed-method single sample pre-test-post-test design examined using a virtual reality intervention simulating health-care environments to improve access of attending health-care appointments. Qualitative feedback was used to understand participants’ experience and opinions of using the digital technology.

The study found that the intervention did help people access health-care appointment and reduced their fear. Improvements were also found in quality-of-life post intervention. Positive feedback was provided from participants on using digital technologies indicating the novelty of the approach and potential further applications.

To the best of the authors’ knowledge, this is the first study which has used virtual reality to support people with intellectual disability access health care.

This study aims to evaluate the dementia assessment and diagnosis care provided to adults with intellectual disability. The authors selected recommendations from the National Institute for Health and Care Excellence (NICE) standards which could be evidenced in clinical notes and aimed to identify characteristics which may be associated with improved adherence to these recommendations.

The study population was adults with an intellectual disability who were diagnosed with dementia between January 2019 and December 2022 by a UK-based intellectual disability service. Data to demonstrate adherence to selected recommendations and demographic and clinical characteristics were extracted from electronic patient records.

The authors identified 41 individuals. A mean of six of the eight recommendations were adhered to. There was low adherence with structural imaging to support dementia subtype diagnosis (9 individuals, 22%). This may be linked with the low percentage of people diagnosed with vascular dementia (1 individual, 2%) despite a national figure of 20%. No demographic or clinical characteristics were associated with level of adherence recorded. The authors found incomplete recording of diagnostic clinical coding in electronic patient records. This may disadvantage this population, as they cannot be readily identified for post diagnostic support or resource allocation.

To the best of the authors’ knowledge, this is the first study to examine adherence to these NICE guidelines in this population.

Autistic young people have health and care needs that may benefit from a multi-agency intervention. The “Current View” tool is routinely used in England to profile the needs of young people referred to mental health services. This study aims to examine associations between comorbidities and complex needs in autistic and non-autistic young people to assess the multifaceted needs of autistic young people.

A cohort study was conducted using data from the electronic patient record, comparing autistic and non-autistic young people to see which items in the four “Current View” tool categories were associated with autistic young people.

Issues associated with autistic young people were: “community issues”, “attainment issues” and “deemed child in need” (all p < 0.001). Autistic young people scored significantly more items (p < 0.05) in the categories complexity/contextual/educational factors. Comorbidities associated with autistic young people included anxiety, “behavioural difficulties”, “peer relationship difficulties” and “self-care issues” (all p < 0.001). There was an association with increased comorbidities and complexity factors in autistic young people which suggests increased support from agencies may be beneficial.

Few studies have used data in the “Current View” tool to assess young people referred to services. More use could be made of this data for planning and delivering services.

There are no existing tools to capture resources needed to support people with intellectual disability in an inpatient setting on an individual patient basis. The purpose of this paper is to describe the development of a new tool called Universal Needs Based Resource Assessment (UNBRA).

Using the Delphi method, focus groups were used to generate factors determining resource use. From these, themes were identified, a scoring system was created and the UNBRA tool was developed. This was piloted in two NHS inpatient units and modified following feedback.

The UNBRA tool holistically assesses resource requirements of an individual with intellectual disability supported in an inpatient setting. It considers ten factors grouped into the six themes of staffing, indirect work, clinical/ multi-disciplinary work, incidents, carer link activity and discharge process. UNBRA scores allow intra- and interpersonal comparison as well as comparison between units and can support resource allocation and operational decision-making.

To the best of the authors’ knowledge, there is no suitable existing tool to capture individual resource requirements of patients in intellectual inpatient settings. The development of the UNBRA tool fills this gap.

This paper aims to understand the lived experience of people with intellectual disability of their anxiety and of being co-design partners in developing a multi-component approach to the management of anxiety.

The development of an anxiety manual and programme was part of a service development which allowed existing and established psychological therapies to be adapted for people with intellectual disability. A qualitative approach was used to better understand the views of people who experienced anxiety on a daily basis. The feedback generated was used to make modifications to the manuals and the anxiety management programme.

The study has demonstrated the value of involving people with intellectual disability in the co-production of an anxiety management programme. Additional findings identified the real-life challenges and experiences of the impact anxiety has on people’s lives.

To our knowledge, this is the first study to involve people with intellectual disability in developing an anxiety management programme as co-production partners. This paper underlines the value of understanding and involving people as co-production partners in developing clinical interventions.

A systematic review of the literature was completed to examine the needs of those who provide care to people with intellectual disability and dementia. The purpose of this paper was to develop an understanding of the complexities, challenges and support available to meet the needs of an ageing population.

A qualitative evidence synthesis was used to appraise 12 studies. An evidence synthesis approach was used to better understand the challenges caregivers experience in caring for a person with intellectual disability and dementia. Aggregating and integrating findings from multiple studies allowed to identify inconsistencies, quality, relationships and trends to enhance the awareness of gaps in care provision.

There were six main domains identified from the available literature which included: gaps in knowledge and skills, early identification of dementia and associated difficulties, managing behaviour, coping, burden of care and Impact on confidence.

To the best of the authors’ knowledge, this is the first paper to use qualitative evidence synthesis to understand the challenges of caring for a person with intellectual disability and dementia.

Education and training is vital in improving age-related care provisions. However, a lack of awareness and understanding of dementia could be a factor in meeting the age-related needs of people. This paper aims to examine the impact dementia education has on caregivers’ confidence to provide person-centred care for people with intellectual disability and identifies additional training needs.

A systematic scoping review was completed using preferred reporting items for systematic reviews and meta-analyses to guide the process of mapping existing evidence of dementia education and training programmes available to caregivers of people with intellectual disability.

A search of five electronic databases identified 11 articles that reported on the role of dementia education in improving the knowledge of caregivers in effectively delivering the age-related care. Findings suggest that improved training provision is needed to support early diagnosis and increase caregivers’ confidence in meeting the physical and psychological needs of older adults with intellectual disability.

This review contributes to the literature by identifying the value of and need for continued development in dementia education and training to improve person-centred dementia care.

The purpose of the study was to examine whether there were differences in the provision of non-pharmacological interventions based on the level of intellectual disability and the presence or absence of autism. Mental health conditions are often underdiagnosed in adults with intellectual disability and do not always receive psychological interventions as recommended by the National Institute for Health and Care Excellent guidelines. To realise the national UK programme’s aim of stopping the overuse of medications in people with intellectual disability, it is important that these individuals have access to appropriate non-pharmacological interventions. The authors examined the relationship between an individual’s level of intellectual disability and the presence or absence of autism with access to relevant non-pharmacological interventions from specialist community intellectual disability services.

A cross-sectional study of adults accessing four specialist intellectual disability services in North West England in 2019.

There was a high prevalence of mental health comorbidity, even higher for autistic adults. However, a relatively small percentage of the study population was receiving psychological interventions. The most frequent non-pharmacological intervention was a positive behaviour support plan, irrespective of comorbid mental illnesses.

Not having access to psychological interventions for the treatment of mental illness could result in poor health outcomes and increasing health inequalities. The study highlights the need for developing psychological interventions, particularly for those with moderate to severe intellectual disability and for those with associated autism.

This large sample study examined the relationship between intellectual disability level and the presence of autism with accessing psychological interventions.