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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.
The health of the nation outcome scales for people with learning disabilities (HoNOS-LD)
- Authors:
- ROY Ashok, et al
- Publication year:
- 2002
- Pagination:
- 55p., disc
- Place of publication:
- London
The Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD) is the result of collaboration between the Royal College of Psychiatrists, the British Psychological Society and the Department of Health. HoNOS-LD measures global outcomes (improvement or deterioration) in people with learningdisabilities who have additional mental health needs.
Facilitating future planning for ageing adults with intellectual disabilities using a planning tool that incorporates quality of life domains
- Authors:
- O'GRADY Kathy, CONCLIFFE Chris
- Journal article citation:
- Journal of Gerontological Social Work, 37(3/4), 2002, pp.105-119.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
When ageing families of an adult with a lifelong disability embark on a process of planning for the future, they generally think in terms of making hard and fast decisions about where the person with the disability is going to live when “the time comes”; and who will take on their direct care. When ageing families do make plans, they often focus only a place to live. This can mean that other significant aspects of a person’s life (i.e., quality of life factors) are negated or neglected. Reviewing population demographics for both the Republic of Ireland and Northern Ireland, it was ascertained that a sizable number of parents will be aging in the near future and that some formalised assistance for future planning was needed. To this end, a planning instrument, was developed in order to help families and other carers with planning for the future and involving a variety of quality of life domains, including health, financial, vocational, social, civil, and residential well-being.
Health, age, and gender: how do women with intellectual disabilities fare?
- Author:
- ANDERSON Deborah J.
- Journal article citation:
- Journal of Gerontological Social Work, 38(1/2), 2002, pp.137-159.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
The 1994-1995 Disability Supplement to the National Health Interview Survey (administeredto a representative sample of the U.S. population) was analyzed for women age 30 and older with intellectual disabilities (ID), developmental disabilities (DD) or both, in order to describe their functioning as they aged in the community. Definitions of ID and DD consistent with professional and legal standards were developedand adapted to the NHIS-D questions. An estimated .56% of the approximately 77 million civilian, noninstitutionalized, women age 30 and older in the United States have one of these disabilities. Compared with women in general,women with these disabilities had negative perceptions of their health status, particularlywomen with DD and health indicators tended to support their perceptions. Most were independent in activities of daily living , but instrumental activities of daily living posed more of a callenge, and limitations in major activities were common as was a high rate of distress and psychosocial difficulties.
Going through the menopause: perceptions and experiences of women with intellectual disability
- Author:
- McCARTHY Michelle
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 27(4), December 2002, pp.281-295.
- Publisher:
- Taylor and Francis
This article explores the perceptions, experiences and support needs of women with intellectual disability as they go through the menopause. Findings are presented from semi-structured interviews with 15 women with mild to moderate intellectual disability aged 43-65 years. Levels of knowledge about what the menopause was, when it happened, and whether it happened to all women, were found to be generally low. More significantly, the majority of the women did not understand the significance of the menopause on a woman's reproductive capacity. The women's experiences of change and transition were on a predominantly physical level, with some emotional effects, but little or no psychological and social impact noted.
Spirituality and the lives of people with learning disabilities
- Author:
- SWINTON John
- Journal article citation:
- Tizard Learning Disability Review, 7(4), October 2002, pp.29-35.
- Publisher:
- Emerald
Reports on a project to explore some significant aspects of the 'forgotten dimension' of spirituality and to illustrate that available research evidence and the experiences of people with learning disabilities suggest it is an aspect of life which should be taken seriously. Offers some insights to enable service providers to begin to understand and incorporate spirituality into lives of people with learning disabilities.
A validity study of the Screening Tool of Feeding Problems (STEP)
- Authors:
- KUHN David E., MATSON Johnny L.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 27(3), September 2002, pp.161-167.
- Publisher:
- Taylor and Francis
The Screening Tool of Feeding Problems (STEP) was developed as a means to identify feeding problems presented by persons with an intellectual disability, for diagnosis, treatment and evaluating treatment outcome. Rarely is assessment comprehensive and often problems are not identified until they are severe. Items for the scale were developed to target feeding problems identified in the literature in the areas of risk of aspiration, food selectivity, feeding skills deficits, food refusal and associated behaviour problems, and nutrition related behavior problems. The current study examines the validity of the STEP as a means to identify feeding problems.
Falling through the gap not an option
- Author:
- HOPKINS Graham
- Journal article citation:
- Community Care, 19.09.02, 2002, pp.46-47.
- Publisher:
- Reed Business Information
Young people with profound and complex learning difficulties have often been left out of the process of planning their own futures, but now a project set up in Wales aims to give them more options by focusing on each individual and creating personalised portfolios.
Down Syndrome and health care: a guide for professionals, carers and families on the health needs of adults with Down Syndrome
- Authors:
- PRASHER Vee, SMITH Beryl
- Publisher:
- British Institute of Learning Disabilities
- Publication year:
- 2002
- Pagination:
- 154p.bibliog.
- Place of publication:
- Kidderminster
This book deals with both the minor and more serious health issues for people with Down syndrome, their possible causes and how they can be managed. Personal and social issues are covered, as well as specific medical issues, a medical checklist and further sources of information.
Responses to women with learning disabilities as they go through the menopause
- Author:
- McCARTHY Michelle
- Journal article citation:
- Tizard Learning Disability Review, 7(1), January 2002, pp.4-12.
- Publisher:
- Emerald
The research investigated how women with learning disabilities understand and experience the menopause, and the support available. This paper reports the experiences and attitudes of those people to whom women with learning disabilities might turn for support. GPs generally reported re;actively little experience in treating women with learning disabilities for menopause-related symptoms and some recognised the need for pro-active work. Carers played a key role on facilitating women' s access to primary health care. Staff in residential and day services recognised the role they played in supporting women through the menopause, but were hampered by lack of time and resources. Mothers of middle-aged women with learning disabilities and viewed this transition positively. The need for specialist educational materials was emphasised by all who took in this research.