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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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Faculty for People with

Intellectual Disabilities

Dementia and People with Intellectual Disabilities

Guidance on the assessment, diagnosis, interventions and

support of people with intellectual disabilities who develop dementia

April 2015

August 2014

About the Society

The British Psychological Society, incorporated by Royal Charter, is the learned and

professional body for psychologists in the United Kingdom. We are a registered charity

with a total membership of around 50,000.

Under its Royal Charter, the objective of the British Psychological Society is ‘to promote the advancement and diffusion of the knowledge of psychology pure and applied and especially to promote the efficiency and usefulness of members by setting up a high standard of professional education and knowledge’. We are committed to providing and disseminating evidence-based expertise and advice, engaging with policy and decision makers, and promoting the highest standards in learning and teaching, professional practice and research.

The Society is an examining body granting certificates and diplomas in specialist areas of professional applied psychology.

This publication has been produced by the Faculty for People with Intellectual Disabilities of the British Psychological Society Division of Clinical Psychology and the Intellectual Disabilities Faculty of the Royal College of Psychiatrists, and represents the views and expert contributions of the members of those faculties only.

Printed and published by the British Psychological Society.

© The British Psychological Society 2015 REP77 4/2015 The British Psychological Society St Andrews House, 48 Princess Road East, Leicester LE1 7DR, UK Telephone 0116 254 9568 Facsimile 0116 247 0787 E-mail mail@bps.org.uk Website www.bps.org.uk Incorporated by Royal Charter Registered Charity No 229642 If you have problems reading this document because of a visual impairment and would like it in a different format, please contact us with your specific requirements.

Tel: 0116 252 9523; email: P4P@bps.org.uk For all other enquiries tel 0116 254 9568; email mail@bps.org.uk Contents Membership of the working group



Purpose of this guidance

Section 1: Context

Section 2: Epidemiology

Section 3: Baseline assessment and monitoring

Section 4: Possible reasons for apparent decline in functioning

Section 5: Clinical presentation of dementia

Section 6: Assessment

Section 7: Establishing the diagnosis and breaking the news

Section 8: Additional health co-morbidities associated with dementia

Section 9: Conceptual understanding of the dementia process

Section 10: Philosophy of care

Section 11: Environments

Section 12: Meeting changing needs/interventions

Section 13: Medication

Section 14: Safe eating and drinking

Section 15: Palliative care and end of life issues

Section 16: Capable commissioning for people with intellectual disabilities and dementia

Section 17: Capable support

Section 18: Outcomes

Section 19: Future directions and research


Appendix 1: Good practice standards

Appendix 2: Quality outcome measure for individuals with dementia

Appendix 3: Leaflet for commissioners

–  –  –

Acknowledgements The working group acknowledges the help of the following people in providing their views, advice and contributions: Members of the DCP Faculty for People with Intellectual Disabilities and the Royal College of Psychiatrists.

–  –  –

It is a great pleasure to be asked to provide a foreword for this excellent guidance on dementia and people with intellectual disabilities. The awareness of dementia has never been higher and the emphasis on providing support to people following a diagnosis is most important. We know that dementia attracts stigma and that is of at least equal if not more relevant in people with intellectual disabilities. Professionals and the public are generally more aware of the increased risk of developing dementia in people with intellectual disabilities.

The guidance is comprehensive across the pathway from diagnosis, post diagnostic support including assessment, through management and end of life care. Its strength is in its comprehensive nature, including, in the same breath, those practical and clinical suggestions which are so important in the day-to-day care of people as well as the evidence base for these actions. The multi-professional nature of the guidance is so important.

One of the things which has been achieved in dementia in the general population, particularly older people, is to convey a message that dementia is a challenge for everybody. Information and guidance has been key to this and the information provided in this guide will go a long way to reassuring people that issues regarding cognitive impairment and dementia in people with intellectual disabilities are not, in all cases and as a matter of course, the purview of the expert and the specialist.

Everyone knows that, thanks to advances in medical care and the social environment, people with intellectual disabilities are now living longer, a great success and a tribute to society, and that brings with it some challenges in terms of the need for more services for people with cognitive impairment and intellectual disabilities.

This guidance has been created carefully by the recognised authorities in the arena and has been woven together expertly. It is accessible and yet comprehensive, it is practical but not simplistic but most importantly it whets the appetite of the reader to learn more.

Although concentrating on initiatives in England, an international audience could read it with benefit.

I certainly learnt more about dementia in people with intellectual disabilities in reading this than I have ever before.

Professor Alistair Burns National Clinical Director of Dementia NHS England Guidance on their Assessment, Diagnosis, Interventions and Support 3 Purpose of this guidance This report is a revision to the original joint British Psychological Society and the Royal College of Psychiatrists (2009) guidance on dementia and people with intellectual disabilities. It has been written by a joint working group of the DCP Intellectual Disabilities Faculty of the British Psychological Society and the Royal College of Psychiatrists.

The main purpose of the guidance is to enable those working in clinical and social care services to improve the quality of life of people with intellectual disabilities who develop dementia, by providing guidance to inform assessment, diagnosis, interventions and support. The guidance is aimed at clinicians in intellectual disabilities and older peoples’ mental health services and services for younger people with dementia. The decision about which services provide which part of the care pathway is a local decision to be taken by commissioners and providers, but ensuring that all elements of this guidance are considered and in place for people with intellectual disabilities and dementia.

Since the original guidance was published there has been a far greater awareness about dementia in the general population and a proliferation of strategies and standards documents. However, dementia and people with intellectual disabilities has still received minimal focus. The current guidance has been updated using both the current research literature and the experience of senior clinicians working in the field. Some areas of the guidance have only needed minor changes, whilst others have had a more extensive rewrite. Three completely new sections have been added.

As before, our main focus has been to highlight the key factors that we consider are the elements of an excellent service, and to help those working in services evaluate how they might help the increasing numbers of people with intellectual disabilities who are developing dementia given improvements in life-expectancy.

It is with these principles in mind that this report has been produced and has the following


To bring together available and relevant evidence-based practice with a consensus of I clinical opinion and experience.

To provide a framework for good practice and for the development of multi-agency I care pathways.

To promote effective and timely assessment, diagnosis, and interventions for people I with intellectual disabilities suspected or confirmed as having dementia and to ensure quality support to them and their staff and other carers.

To provide guidance for service providers, developers and commissioners.

I To provide a set of standards of good practice against which service provision can be I benchmarked and audited.

To provide a quality outcome measure to use to evaluate what the person with I intellectual disabilities and dementia is experiencing in their care.

To promote the development of comprehensive and effective local services and to I reduce the number of individuals who are failed by current service provision.

–  –  –

The report was produced through the combined work of members of the working group and drew on the published evidence base and from the working group members’ extensive clinical experience in this area. Although this report has been undertaken primarily by psychologists and psychiatrists, we recognise that people with dementia must have effective multi-agency and multi-disciplinary services. We believe that this report will therefore be relevant to anyone who has an interest in dementia and people with intellectual disabilities, including health and social care professionals, families, paid staff, advocates, service providers and commissioners.

We still cannot be prescriptive within the document, particularly about the choice of assessment tools, because the evidence is not available to support particular instruments.

Decisions will still need to be made locally depending on local resources and configurations. However, the report is intended to highlight the specific issues that people with intellectual disabilities and dementia present, and to ensure that local services are timely, effective and ensure that the person continues to have a high quality, safe and person-centred lifestyle as the dementia progresses.

This is a rapidly developing area with new knowledge and practice developing all the time.

Research with people with intellectual disabilities and dementia is increasing, and will add to the evidence base.

Finally, the report hopes to complement other publications and guidance in this area and to provide a way forward for supporting people with intellectual disabilities who develop dementia.

Guidance on their Assessment, Diagnosis, Interventions and Support 5 Section 1 – Context In March 2012 the Prime Minister, David Cameron, set out what he called ‘the Dementia Challenge’ (DH, 2012a). Recognising the urgent need for change, he set targets for improvements by 2015 in three broad areas: 1) health and care, 2) the establishment of dementia friendly communities, and 3) improving dementia research. This document has been revised with these challenges in mind, paying particular attention to how they apply to people with intellectual disabilities. It sets out standards of clinical practice in the areas of assessment, diagnosis and interventions for people with intellectual disabilities who develop dementia with an emphasis on how people with intellectual disabilities who develop dementia can be best supported in a manner that maintains their dignity and quality of life.

Although this document primarily references the context of dementia in England and the other UK nations, publications from other nations are equally as relevant and have the same underlying principles and practices outlined in them, for example Australia’s National Framework for Action on Dementia (Australian Government, 2006) and the Netherlands’ National Dementia Plan (Ministry of Health, 2004).

1.1 Dementia publications Interest in the field of dementia in the general population has further increased since the publication of the first edition of this guidance in 2009. At that time the National Dementia Strategy for England had just been published (Living well with dementia: A National dementia strategy; DH, 2009). The strategy has three key steps: improved awareness and understanding of dementia and removal of the stigma that surrounds it; early diagnosis and intervention; and improving the quality of care for people with dementia by developing a range of services for people with dementia and their carers which fully meets their changing needs over time. The strategy had 17 objectives to be met in a five-year plan; the objectives included improving awareness and diagnosis, better access to care and advice, the needs of carers, the commissioning of health and social care services, better end of life care, workforce planning, and research. Similar strategies have been published in Scotland (Scotland’s National Dementia Strategy 2013–2016; Scottish Government, 2013), Wales (National Dementia Vision for Wales; Welsh Assembly Government, 2011) and Northern Ireland (Improving Dementia Services in Northern Ireland – A Regional Strategy; DHSSPSNI, 2011).

The National Institute for Health and Care Excellence (NICE) and the Social Care Institute for Excellence (SCIE) published a joint clinical guideline on the management of dementia in 2006 (NICE, 2006). Key recommendations included: integrated working across all agencies; provision of memory assessment services as a point of referral for diagnosis of dementia; assessment, support and treatment (where needed) for carers;

assessment and treatment of non-cognitive symptoms and behaviour that challenges;

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