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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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Tyrer, P., Oliver-Africano, P.C., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., Murphy, D., Hare, M., Meade, M., Reece, B., Kramo, K., Bhaumik, S., Harley, D., Regan A., Thomas, D., Rao, B., North, B., Eliahoo, J., Karatela, S., Soni, A. & Crawford, M.

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Watchman, K. (2006). Keep talking about dementia: Information for siblings and professionals about Down’s syndrome and dementia. Edinburgh: Scottish Down’s Syndrome Association.

Watchman, K., Kerr, D. & Wilkinson, D. (2010). Supporting Derek. York: Joseph Rowntree Foundation.

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Dementia and People with Intellectual Disabilities Appendix 3 - Leaflet for Commissioners of Services for People with Intellectual Disabilities and dementia

1. The Specific Issues The life-expectancy of people with mild intellectual disabilities now approaches that in the general population of a similar socio-economic status, but the life–expectancy of people with more severe levels of intellectual disabilities remains reduced compared to the general population. Given these improvements, the overall population with intellectual disabilities is steadily increasing and it has been predicted that the proportion of people with intellectual disabilities over 65 years of age will have doubled by 2020, with over a third of all people with intellectual disabilities being over 50 years of age by that time. This is also true for the population of people with Down’s syndrome.

There is an increase in the prevalence rates of clinically diagnosed dementia with increasing age that starts when people with Down’s syndrome are in their 30s and steadily increases in prevalence into the 60s. It has been calculated that nearly 70% of older adults with Down’s syndrome are likely to develop dementia symptoms should they all live to age 70.

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Figure 1 summarises the age-related prevalence rates of dementia in people with Down’s syndrome, those with intellectual disabilities without Down’s syndrome, and in the general population. The exact rates have to be considered with caution but the trend represented in this figure is now increasingly accepted. The early presentation and course of dementia is now well established for people with Down’s syndrome. For those with intellectual disabilities but without Down’s syndrome, age-related prevalence rates are brought forward to a small degree compared to the general population but not to the same extent as for people with Down’s syndrome. This latter group would appear to have a uniquely early risk for developing dementia, almost invariably of the Alzheimer’s-type. For the former group the full range of causes of dementia is observed.

Guidance on their Assessment, Diagnosis, Interventions and Support 143

2. What should happen Commissioners of health services need to be clear about the care pathway for the assessment, diagnosis, interventions and support for people with intellectual disabilities who develop dementia from primary care, through to appropriate secondary care services, and on to palliative care services. In practice, good quality care will involve active partnershipworking between intellectual disability services, older people’s services, primary and secondary health care, palliative care and social care. These areas should develop an integrated dementia strategy for the care of people with intellectual disabilities and dementia.

This should involve the development of an integrated care pathway involving all relevant agencies. Specialist health professionals e.g. speech and language therapists, physiotherapists, occupational therapists, dietitians, community intellectual disabilities nurses are all essential partners in providing excellence in care.

Commissioners of social care need to recognise that dementia is by definition a deteriorating condition, and that peoples’ needs will increase over time, and therefore increased and timely funding will be needed to ensure safe practice. This will inevitably involve the funding of waking night staff as the dementia progresses. Best practice is that people with intellectual disabilities should receive their residential care within the intellectual disabilities arena rather than in generic services for people with dementia, as the quality of the services gives people the best opportunities for a good quality of life for both their intellectual disabilities and their dementia. There will need to be efficient processes and understanding in place to ensure that Continuing Healthcare Assessments are undertaken promptly and funding agreed as needed.

Staff involved in assessment, diagnosis, interventions and support need to be trained in dementia care and be able to offer both holistic and specialist assessments and a range of interventions aimed at meeting the needs of people with intellectual disabilities and dementia. Care managers have an essential role to play in ensuring that services are actively monitored to ensure that they are responsive to the changing needs of the person.

People with intellectual disabilities and dementia should have access to regular reviews (monthly - six monthly depending on the rate of deterioration) by an identified care manager.

End of Life care needs to be planned in advance, using the same principles and services available to the general population. Good partnership-working with palliative care services is essential, both to support the person and the carers.

3.0 What are the elements of an excellent service?

Commissioners will want to ensure that there is:

• Demographics are known including having a database of all adults with intellectual disabilities which includes identification of people with Down’s syndrome and those in out of area placements.

• A multi-agency dementia strategy.

• A multi-agency care pathway for assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia.

• A multi-disciplinary approach to assessment and diagnosis and support.

• Prompt access to assessment and diagnostic services including baseline assessment for people with Down’s syndrome by the age of 30.

• Person-centred dementia care.

• Effective care management and review system.

• Prompt access to the full range of medical, psychological, therapeutic and social interventions.

• All living and day service environments are dementia friendly.

144 Dementia and People with Intellectual Disabilities The person is supported to remain in their familiar home with additional supports • provided in a timely manner.

Support is available to family carers and service providers.

• There is a capable workforce able to deliver excellence in dementia care.

• End of Life care follows the requirements of the National End of Life Strategy.

4.0 What should the commissioners expect as outcomes of an excellent service?

Increase in prompt differential diagnosis of the person’s difficulties.

• Increase in other conditions being treated promptly.

• Increase in accurate diagnosis of dementia.

• Reduction in behavioural difficulties.

• Increase in quality of life indicators for the person.

• Reduction in moves to other placements.

• Reduction in the need for emergency one-to-one cover, as a result of planned increases • in support as the dementia progresses to enable people to continue to access preferred activities and for personal care.

Reduction in out of area placements.

• Increased carer support and satisfaction.

• Reduction in staff stress.

5.0 Potential risks if services are not available/not effective Increased costs of one-to-one, new in area or out of area placements.

• More complaints.

• Potential safeguarding issues.

• Increase in behaviours leading to abuse or harm to self and others.

• Carer breakdown.

6.0 Further Information

a) Dementia Organisations

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BILD Birmingham Research Park 97 Vincent Drive Edgbaston Birmingham B15 2SQ Tel: 0121 415 6960 www.bild.org.uk Publications Supporting Derek ( Watchman et al., 2010) http://www.jrf.org.uk/publications/supporting-derek Down’s Syndrome and dementia- a resource for carers and support staff (Dodd et al., 2009) http://www.bild.org.uk/our-services/books/bestsellers/downs-syndrome-anddementia/ Down’s Syndrome and dementia workbook for staff. (Dodd et al 2006) http://www.downs-syndrome.org.uk/shop/publications/medical-and-health/forprofessionals/1091-downs-syndrome-and-dementia-workbook.html About Dementia The journey of life About my friend (Dodd et al., 2005) http://www.bild.org.uk/our-services/books/health-and-well-being/about-dementia/ The Simplicity of Dementia. (Buijssen 2005) Jessica Kingsley Publishers.


Understanding Learning Disability and Dementia: Developing Effective Interventions.

(Kerr 2007) Jessica Kingsley Publishers. London 146 Dementia and People with Intellectual Disabilities Printed and published by the British Psychological Society.

© The British Psychological Society 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

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