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Objectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death., Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services., Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses., Conclusions: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support.

Dementia is common in people with Down's syndrome as they age. Having dementia raises huge care considerations for carers and staff. Excellence in care requires attention to a wide variety of interrelated issues. Carers and staff need to have a good understanding of what it means to have dementia to deliver person-centered care. In addition, they need to be clear at all stages of the disease about the outcomes they want to achieve for the person. This will necessitate taking into account both health and social care issues, as well as looking at the physical environment. Staffing and staff training are crucial in providing the right support at the right time. Finally, a vignette of excellence in care is presented.

Introduction: Having a diagnosis of Down syndrome (DS) is associated with intellectual disability (ID), pervasive developmental disorders and Alzheimer's dementia (AD). The association between these conditions has not been well evaluated. This paper looks to examine the current evidence pertaining to the relationship between dementia in people with DS and severity of ID and the presence of pervasive developmental disorders. Methods: A scoping review using PRISMA guidance was undertaken. Medline, Cochrane database, NHS evidence, Trial registers and Open Grey were searched in December 2018 and an updated search was completed in July 2020. Three search strategies were used to retrieve articles relating to DS, dementia, pervasive developmental disorders (including autism, autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD)) and severity of ID. Studies were included if they met the pre-defined inclusion criteria of investigating an association between autism/ASD, ADHD, or severity of ID and the development of dementia in people with DS. Studies were excluded if they did not include primary data, if the population included non-Down causes of ID, or if no specific outcome measure related to comorbid autism/ASD, ADHD, or severity of ID and dementia in people with a diagnosis of DS were reported. There were no exclusions related to study design. Papers were assessed for quality using the Mixed Methods Appraisal Tool (MMAT). Results: The search identified 15 papers, publishing results from 12 studies, relating to severity of ID, DS and dementia. No papers were identified relating to pervasive developmental disorders, DS and dementia. There is limited evidence on how severity of ID impacts on the presentation, diagnosis, management or prognosis of dementia in people with DS. However, no evidence was found on comorbid pervasive developmental disorders, DS and dementia. Conclusion: This paper has identified multiple areas for future research. There is an urgent need for longitudinal studies into the presentation, development and progression of dementia in people with DS ensuring the severity of ID and comorbid pervasive developmental conditions are captured regularly to understand their influence on the dementia etiology and outcome.

It is well established that people with Down's syndrome are more likely to develop dementia than other people and that onset of dementia is likely to occur earlier at an earlier age. The article reports on a specialist service for people with Down's syndrome and dementia. The service has offered dementia screening and assessment to people with Down's syndrome for over 10 years and has also developed to offer support and training for carers. Semi-structured interviews were conducted with family carers, relatives and staff about the impact on them of caring for someone with Down's syndrome and how the dementia service supports them in this role. The resulting data were analysed using interpretative phenomenological analysis. The responses provide rich insights into the areas of "knowledge and information", "coping and support" and "concerns about the future". Interviewees also identified services they wanted for the future. As a result of this evaluation, a number of changes have been proposed and begun to be implemented within the service. The results have important implications for other health, social care and voluntary organisations. (Contains 4 tables.)

Background: Individuals with Down syndrome (DS) are at significant risk for early onset Alzheimer's disease (AD), likely due to the triplication of genes on chromosome 21 that facilitate AD neuropathology. To aid the effective early diagnosis of dementia in DS, we demonstrate the strategy of using single point assessment of cognitive performance with scoring normed for degree of intellectual disability to generate age related prevalence data for acquired mild cognitive impairment (AMCI).Methods: Four hundred and twelve adults with DS were assessed using the Neuropsychological Assessment of dementia in adults with Intellectual Disability. Normative data, banded by degree of intellectual disability, allowed identification of AMCI by atypical deviation from expected performance.Results: AMCI was evident in approximately 20% of adults with DS aged 40 and under, 40% aged 41-50 and 45% aged 51 and over. Relative risk increased significantly in those aged 46 and over. Analysis of prevalence by 5-year age bands revealed two peaks for higher prevalence of AMCI.Conclusions: Psychometric data indicate single point assessment of AMCI is possible for the majority of adults with DS. Two peaks for age-related prevalence of AMCI suggest the risk for onset of AD conferred by trisomy of chromosome 21 is moderated by another factor, possibly ApoE status. [ABSTRACT FROM AUTHOR]

Having a diagnosis of Down syndrome (DS) is associated with intellectual disability (ID), pervasive developmental disorders and Alzheimer's dementia (AD). The association between these conditions has not been well evaluated. This paper looks to examine the current evidence pertaining to the relationship between dementia in people with DS and severity of ID and the presence of pervasive developmental disorders. A scoping review using PRISMA guidance was undertaken. Medline, Cochrane database, NHS evidence, Trial registers and Open Grey were searched in December 2018 and an updated search was completed in July 2020. Three search strategies were used to retrieve articles relating to DS, dementia, pervasive developmental disorders (including autism, autism spectrum disorder (ASD) and attention-deficit hyperactivity disorder (ADHD)) and severity of ID. Studies were included if they met the pre-defined inclusion criteria of investigating an association between autism/ASD, ADHD, or severity of ID and the development of dementia in people with DS. Studies were excluded if they did not include primary data, if the population included non-Down causes of ID, or if no specific outcome measure related to comorbid autism/ASD, ADHD, or severity of ID and dementia in people with a diagnosis of DS were reported. There were no exclusions related to study design. Papers were assessed for quality using the Mixed Methods Appraisal Tool (MMAT). The search identified 15 papers, publishing results from 12 studies, relating to severity of ID, DS and dementia. No papers were identified relating to pervasive developmental disorders, DS and dementia. There is limited evidence on how severity of ID impacts on the presentation, diagnosis, management or prognosis of dementia in people with DS. However, no evidence was found on comorbid pervasive developmental disorders, DS and dementia. This paper has identified multiple areas for future research. There is an urgent need for longitudinal studies into the presentation, development and progression of dementia in people with DS ensuring the severity of ID and comorbid pervasive developmental conditions are captured regularly to understand their influence on the dementia etiology and outcome. [ABSTRACT FROM AUTHOR]

Objectives: Post diagnostic support (PDS) has varied definitions within mainstream dementia services and different health and social care organizations, encompassing a range of supports that are offered to adults once diagnosed with dementia until death. Method: An international summit on intellectual disability and dementia held in Glasgow, Scotland in 2016 identified how PDS applies to adults with an intellectual disability and dementia. The Summit proposed a model that encompassed seven focal areas: post-diagnostic counseling; psychological and medical surveillance; periodic reviews and adjustments to the dementia care plan; early identification of behaviour and psychological symptoms; reviews of care practices and supports for advanced dementia and end of life; supports to carers/ support staff; and evaluation of quality of life. It also explored current practices in providing PDS in intellectual disability services. Results: The Summit concluded that although there is limited research evidence for pharmacological or non-pharmacological interventions for people with intellectual disability and dementia, viable resources and guidelines describe practical approaches drawn from clinical practice. Post diagnostic support is essential, and the model components in place for the general population, and proposed here for use within the intellectual disability field, need to be individualized and adapted to the person's needs as dementia progresses. Conclusions: Recommendations for future research include examining the prevalence and nature of behavioral and psychological symptoms (BPSD) in adults with an intellectual disability who develop dementia, the effectiveness of different non-pharmacological interventions, the interaction between pharmacological and non-pharmacological interventions, and the utility of different models of support. [ABSTRACT FROM AUTHOR]

Purpose – Outcome measurement is a key priority for services. There are no papers on specific overall quality outcome measures for people with intellectual disabilities who have dementia. The purpose of this paper is to describe the development and piloting of a new measure. Design/methodology/approach – A process was developed to measure quality outcomes across all stages of dementia. The reliability of the tool was measured using Cronbach’s α coefficients, along with data about its clinical utility. Findings – The QOMID has good reliability, face validity and internal reliability suggesting that all domains contribute equally towards the construct of quality outcome. An exploratory factor analysis revealed that there may be four or five sub-factors within the QOMID, The clinical utility of the assessment tool was explored and it can be concluded that the QOMID is simple, fairly quick and effective. Research limitations/implications – The scale has good psychometric properties and the initial parameters for the QOMID were met. Further exploration of factors needs to be considered with a larger sample of participants. Practical implications – The scale was liked by assessors and gives a practical tool that can both measure the quality outcome for people at each stage of their dementia, and help to develop more effective care plans. Originality/value – This is the first measure to look at quality outcomes for people with intellectual disabilities and dementia and which takes a staged approach. [ABSTRACT FROM AUTHOR]

This review presents the physical performance outcomes of randomised trials investigating exercise programmes that included balance exercise for older people with dementia. A systematic literature search through five computerised bibliographic databases until February 2009 was carried out. Of 1,038 potentially relevant published articles, only seven met the inclusion criteria and were extracted. Findings from the review for a total of 632 participants showed that almost all of the included studies addressed exercise or physical activities as the main intervention; however, only two of the studies focused on balance exercise. The effect size values varied from no effect (0.00) to a large effect (3.29) of the interventions for a range of physical performance outcome measures. Findings also suggest that it is feasible to conduct exercise programmes with older people with dementia. However, further studies with more specific exercise designed to improve balance performance in order to prevent falls are required for older people with dementia. [ABSTRACT FROM AUTHOR]

The focus of interest in dementia in people with learning disabilities has been largely on epidemiology, prevalence, assessment and diagnosis. There has been less focus on care issues and interventions, with a paucity of research papers but a growing number of books and resource packs addressing these issues. Psychological and non-pharmacological approaches are useful in services for people with learning disabilities and dementia, but must be delivered in line with a clear conceptual framework of dementia that aids staff in understanding what is happening to the person with dementia and the effect of their care and responses. This paper describes the most commonly used approaches, including developing an understanding of dementia, anxiety and stress reduction, life story work, reminiscence, reality orientation and validation techniques, helping peers to understand dementia, other therapeutic approaches, and understanding behaviour and dementia care mapping and their impact on the well-being of people with learning disabilities and dementia and the people who support them. [ABSTRACT FROM AUTHOR]