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«Faculty for People with Intellectual Disabilities Dementia and People with Intellectual Disabilities Guidance on the assessment, diagnosis, ...»

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19.1 Policy context Alzheimer’s disease and dementia is increasingly becoming a key research priority for many countries, and the aim of the international community is to ensure that it has the same prominence as cancer research. In England, Earl Howe announced in March 2013 the intention of the Government to increase research and innovation in health and social care emphasising the investment in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC). This policy document lists the Government initiatives including the research networks, the NIHR research advisory service and the recently established 15 Academic Health Science Networks for England. Scotland, Wales and Northern Ireland are having their own initiatives. Within this context, the development of new treatments for dementia, and trials to assess such treatments, have a high priority.

Clinical trials are not just about pharmaceutical developments but also about psychological treatments and other approaches, the aim of which might be to maintain function and the dignity of those affected by dementia. This section has therefore been added to the revised guidance largely because we recognise that new treatments for dementia are being, and will be, developed and it is imperative that people with intellectual disabilities, in general, and people with Down’s syndrome, specifically, have the opportunity to partake in trials and subsequently benefit from the treatments that are found to be safe and effective.

19.2 Advances in understanding Advances in the understanding of dementia in people with intellectual disabilities, in general, and people with Down’s syndrome, in particular has become more possible with improvements in diagnosis and in the means of tracking the cognitive and functional changes associated with dementia over time. Research in the UK and internationally has clearly established that people with Down’s syndrome have a high risk for developing the clinical features of dementia from their 30’s with a peak incidence in their early 50’s.

Similarly, people with intellectual disabilities (not due to Down’s syndrome) have a slightly earlier age-related prevalence profile of dementia than the typically developing population.

For people with Down’s syndrome the focus of research has been on the role of the amyloid precursor protein (APP) gene on chromosome 21 (therefore inherited in triplicate in people with Down’s syndrome) leading to the ‘amyloid cascade hypothesis’ for dementia of the Alzheimer’s type in this population. New structural (MRI) and ligandbased (PET) neuroimaging studies provide the means for investigating this relationship and large scale genetic association studies enable the influence of variations at other genetic loci on the course of dementia to be studied.

Particularly in people with Down’s syndrome, the longer term objective of research is the development of a preventative treatment. These proposed new treatments will need to be 94 Dementia and People with Intellectual Disabilities tested in formal double blind placebo controlled trials. At present treatment developments aimed at preventing dementia in people with Down’s syndrome are focused on the modification of beta amyloid production in the brain. For people with intellectual disabilities not due to Down’s syndrome advances in treatment are likely to emerge from research in the typically developing population, however, these may need more formal testing (particularly with respect to side effect profiles) in the intellectual disabilities population.

Outside of pharmaceutical developments, which may still be some years away, there has been a lack of research involving people with intellectual disabilities in the environmental and psychological strategies used in the general population to optimise function and maintain dignity and quality of life, such as cognitive stimulation or the Enhancing the Healing Environment (EHE) initiative. Research, whether of a pharmaceutical agent or of some support strategy requires the identification and involvement of people with intellectual disabilities and those who support them.

19.3 Clinical trials For treatments to be developed that might prevent or treat dementia it is necessary to engage people with dementia in such research and specifically in clinical trials. This is particularly the case for people with Down’s syndrome where the risk of developing Alzheimer’s disease relatively early in life is high and treatment aimed at prevention is therefore a priority. Such research requires collaboration between people with dementia and their families, clinicians, social care providers and clinical academics and basic scientists. Research of this type has particular challenges if the right balance is to be achieved between enabling research that will lead to new treatments, on the one hand, and, on the other, ensuring the people with intellectual disabilities and dementia are not exposed to excessively intrusive research or to exploitation. It will be clinicians and support workers who are at the forefront when it comes to recruitment to such trials.

19.4 The role of clinicians in research The following points highlight how clinicians can work in partnership to facilitate such research.

To enable research a major priority is to improve the recruitment of patients into research through building on the NHS Constitution pledge to inform patients about opportunities to participate in research and engaging the NHS in the implementation of RAFT (the Recruitment and Feasibility Tool – a database for patients to register their interest in dementia research). Clinicians and those who support people with intellectual disabilities are the gateway to recruitment and the attitude taken to research by these two groups of people has a powerful impact on whether the potential participant is willing to meet those doing the research. Ultimately it must be for the person with intellectual disabilities to decide or, where he/she lacks the capacity to consent, the protocols and safeguards in the appropriate European and national legislations then apply (e.g. European Clinical Trials Regulation 536 (2014), Mental Capacity Act (2005), Adults with Incapacity [Scotland] Act (2000).





Guidance on their Assessment, Diagnosis, Interventions and Support 95 With the advent of electronic health records searches are now possible according to particular diagnostic categories. The identification of potential participants for research has therefore become more feasible. Specialist services for adults with intellectual disabilities should ensure that all people with intellectual disabilities seen and who have received a diagnosis of dementia are identifiable by the service and at the time of diagnosis those concerned and those supporting them are informed about the importance of research, including any trials that are taking place. Specialist services have a responsibility for the identification of people with intellectual disabilities and dementia and to be willing to approach those meeting the necessary criteria for inclusion in a study on behalf of the research group undertaking the study.

In clinical practice different clinicians and services may have their own approaches but for research it is usually necessary to have more formal and time-consuming assessments so that findings can be compared across studies – see section 6 for examples of diagnostic instruments and cognitive and functional assessments. Whilst it is through additional research funding that these more extensive assessments can be undertaken than is possible in clinical practice the use of agreed diagnostic assessments and of standard cognitive assessments would enhance recruitment on a larger scale for studies of, for example, risk and protective factors or for treatment trials. Clinicians working in local specialist services should establish diagnostic and assessment protocols that are agreed and in general use.

19.5 Infrastructure and funding In England, the NIHR has established a Clinical Research Network (CRN) with regional hubs that support research recruitment and ensure that clinicians and patients from all parts of the country are able to participate in and benefit from research. In particular, the Mental Health Research Network (MHRN) and the Dementia and Neurocognitive Diseases Research Network (DeNDRON) should be able to support clinical trials in adults with Down’s syndrome or intellectual disabilities who has dementia. Similar networks have been established in Wales (Clinical Research Collaboration Cymru – CRC Cymru) and in Scotland (the Scottish Clinical Research Network). The Scottish Dementia network (SDCRN) has been very supportive of dementia research in the intellectual disabilities population. Intellectual Disabilities Services clinicians who are interested in research in this population could also join research groups associated with their professional organisations, such as the Dementia in Intellectual Disabilities special interest group (DIDSIG) associated with the Intellectual Disability Faculty of the Royal College of Psychiatrists.

There are no specific funding streams for dementia research in intellectual disabilities, and it may be seen as a ‘niche” area for mainstream funders. Funders may therefore benefit from being made aware of the importance of research in this area.

96 Dementia and People with Intellectual Disabilities

19.6 Recommendations

1. Staff in services seeing adults with intellectual disabilities and, specifically adults with Down’s syndrome, where the diagnosis of dementia is being considered, should ensure that when a diagnosis of dementia is made the person concerned and those who support them are made aware of research projects being undertaken and permission requested to pass on their details to any approved and relevant research project.

2. Services have the means to retrospectively identify any person with intellectual disabilities diagnosed as having dementia and specifically people with Down’s syndrome either in the age at risk for dementia or with a diagnosis of dementia and be willing to be a point of contact with them if approved and appropriate research is being undertaken that is looking for potential participants.

3. In specialist memory clinics and in services for adults with intellectual disabilities the use of standardised diagnostic and neuropsychological assessments for the diagnosis and monitoring of dementia, as it affects people with intellectual disabilities, is encouraged. This will ensure that comparison can be made across services and over time thereby providing consistent and reliable data on prevalence and incidence of dementia in this population and also enabling recruitment into future trials of any new intervention or treatment.

Guidance on their Assessment, Diagnosis, Interventions and Support 97 References Abbey, J., Piller, N., Bellis de, A., Esterman, A., Parker, D., Giles, L. & Lowcay, B. (2004).

The Abbey pain scale: a 1-minute numerical indicator for people with end stage dementia. International Journal of Palliative Nursing, 10, 6–14.

Adams, D. & Oliver, C. (2010). The relationship between acquired impairments of executive function and behavior change in adults with Down syndrome. Journal of Intellectual Disability Research, 54(5), 393–405.

Albert, M. & Cohen, C. (1992). The Test for Severe Impairment: an instrument for the assessment of people with severe cognitive dysfunction. Journal of the American Geriatric Society, 40, 449–53.

American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th edn.). Arlington, VA: American Psychiatric Publishing.

Australian Government (2006). The National Framework for Action on Dementia 2006–2010.

Retrieved from www.alz.co.uk/sites/default/files/australia_plan.pdf.

Ball, S.L., Holland, A.J., Huppert, F.A., Treppner, P., Watson, P. & Hon, J. (2006).

Personality and behaviour changes mark the early stages of Alzheimer’s disease in adults with Down’s syndrome: findings from a prospective population-based study.

International Journal of Geriatric Psychiatry, 21, 661– 673.

Ball, S.L., Holland, A.J., Huppert, F.A., Treppner, P. & Dodd, K. (2006). CAMDEX-DS: The Cambridge examination for mental disorders of older people with down’s syndrome and others with intellectual disabilities. Cambridge: Cambridge University Press.

Ball, S.L., Holland, A., Treppner, P., Watson, P.C. & Huppert, F.A. (2008). Executive dysfunction and its association with personality and behaviour changes in the development of Alzheimer’s disease in adults with Down syndrome and mild to moderate learning disabilities. British Journal of Clinical Psychology, 47(1), 1–29.

Ball, S., Holland, A.J., Watson, P.C., & Huppert, F.A. (2010). Theoretical exploration of the neural bases of behavioural disinhibition, apathy and executive dysfunction in preclinical Alzheimer’s disease in people with Down’s syndrome: potential involvement of multiple frontal-subcortical neuronal circuits. Journal of Intellectual Disability Research, 54(4), 320–336.

Barrett, E. & Burns, A. (2014). Dementia revealed. What primary care needs to know. A primer for general practice. Prepared in partnership by NHS England and Hardwick CCG with the support of the Department of Health and Royal College of General Practitioners.

Brawley, E.C. (1997). Designing for Alzheimer’s disease. Chichester: John Wiley.

Braddock, D. (1999). Aging and developmental disabilities: demographic and policy issues affecting American families. Mental Retardation, 37, 155–161.

British Institute of Learning Disabilities (2014). Easyread facts sheets on dementia.

Kidderminster: BILD 98 Dementia and People with Intellectual Disabilities British Psychological Society (2004). Challenging behaviours: Psychological interventions for severely challenging behaviours shown by people with learning disabilities. Leicester: British Psychological Society.

British Psychological Society & Royal College of Psychiatrists (2009). Dementia and people with learning disabilities: Guidance on the assessment, diagnosis, treatment and support of people with learning disabilities who develop dementia. Leicester: British Psychological Society.

Brodtmann, A. (2009). Hashimoto encephalopathy and Down syndrome. Archives of Neurology, 66(5), 663–666.

Brooker, D. & Surr, C.A. (2005). Dementia care mapping: Principles and practice. Bradford:

University of Bradford.



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