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Down's syndrome and dementia: a resource for carers and support staff
- Authors:
- DODD Karen, TURK Vicky, CHRISTMAS Michelle
- Publisher:
- British Institute of Learning Disabilities
- Publication year:
- 2009
- Pagination:
- 136p., bibliog.
- Place of publication:
- Kidderminster
- Edition:
- 2nd ed.
This resource book is written to help carers, whether family or professional, support and care more effectively for people with Down’s syndrome and dementia. It is not about assessment and diagnosis or intended for formal training. The text focuses on practical day to day issues, including: supporting the person with Down’s syndrome and dementia to maintain skills and independence in every way and for as long as possible; treating treatable conditions; understanding and responding appropriately to changes in behaviour during the early, middle and late stages of dementia; providing emotional reassurance for carers; improving the confidence of carers to look after individuals; identifying local supports and resources; being open to the problems that may arise and help with coping. The book was developed from work undertaken by the Growing Older with Learning Disabilities (GOLD) project in the years 1999-2002. It has been revised to take into account further developments both in working with people with learning disabilities in general and specific developments for people who develop dementia.
Commentary on “Estimating the number of people with Down’s syndrome in Scotland and the cohort at elevated risk of early onset dementia”
- Author:
- DODD Karen
- Journal article citation:
- Tizard Learning Disability Review, 22(3), 2017, pp.172-176.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to consider the implications for people with Down’s syndrome and their families of identifying those people who are at risk of developing dementia from the research study “Estimating the number of people with Down’s syndrome in Scotland and the cohort at elevated risk of early onset dementia”. Design/methodology/approach: The commentary is based on a review of the associated literature. Findings: Estimating the numbers is important but has serious implications for people who have an elevated risk and their families. Preparation and ongoing support and planning are vital to ensure that quality of life is maintained as dementia is identified and progresses. Originality/value: The commentary considers the research presented from a practitioner perspective. (Publisher abstract)
About my friend: for friends of people with Down's Syndrome and dementia
- Authors:
- DODD Karen, TURK Vicky, CHRISTMAS Michelle
- Publisher:
- British Institute of Learning Disabilities
- Publication year:
- 2005
- Pagination:
- 15p.
- Place of publication:
- Kidderminster
Easy-to-read booklet for people with learning disabilities who want to understand dementia. It will be particularly helpful for people who have a friend or family member with dementia, or who are worried about developing dementia themselves. This booklet looks at what happens when a friend develops dementia.
`I am a normal man': a narrative analysis of the accounts of older people with Down's syndrome who lived in institutionalised settings
- Authors:
- BROWN Jennifer, DODD Karen, VETERE Arlene
- Journal article citation:
- British Journal of Learning Disabilities, 38(3), September 2010, pp.217-224.
- Publisher:
- Wiley
This paper is a narrative analysis of the accounts of 6 older people with Down's syndrome who spent part of their childhood in institutional environments. The study aimed to find out how the participants talked about themselves. All of the participants spoke about their childhood, current and future lives. They had interesting and moving stories to tell about their lives. Most participants were able to reflect upon their strengths, limitations and hopes. The analysis highlighted the commonalities across the accounts: loss, abuse, health, significant others, transition, resilience and identity. Significantly, none of the participants identified themselves as having `Down's syndrome' or a `learning disability,' nor did they identify with being `older'. Instead, individuals identified themselves in relation to gender and social roles. The accounts varied in terms of their form, structure, coherence and reflexive capacity. Clinical implications for practice and research are discussed.
Resource pack for carers of adults with Down's Syndrome and dementia
- Authors:
- DODD Karen, TURK Vicky, CHRISTMAS Michelle
- Publisher:
- British Institute of Learning Disabilities
- Publication year:
- 2002
- Pagination:
- 146p.
- Place of publication:
- Kidderminster
People with Down's syndrome are far more likely to develop dementia than the general population, and at a younger age - the average age of dementia onset is just 52 years, with death likely to occur within just six years . This new resource for family carers, staff and other professionals supporting people with Down syndrome, to help them with practical day to day issues, including: supporting a person to maintain skills and independence as long as possible; treating treatable conditions; understanding and responding appropriately to changes in behaviour, at early, middle and late stages of dementia; providing emotional reassurance for carers; improving the confidence of carers to look after individuals; iIdentifying local supports and resources; and being open to the problems that may arise, and help with tips and solutions to cope.
Down's syndrome and dementia: briefing for commissioners; February 2001
- Authors:
- TURK Vicky, DODD Karen, CHRISTMAS Michelle
- Publisher:
- Mental Health Foundation
- Publication year:
- 2001
- Pagination:
- 10p.bibliog.
- Place of publication:
- London
The high risk of dementia for people with Down's syndrome is a major focus of the Growing Older with Learning Disabilities (GOLD) programme at the Foundation for People with Learning Difficulties. This briefing aims to provide appropriate information to families, professionals and people with learning difficulties themselves. Contents include: requirement for commissioning services; checklist of competencies; clinical description; requirements for care management; further information.