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The role of nurses in meeting the health care needs of older people with intellectual disabilities: a review of the published literature
- Author:
- JENKINS Robert
- Journal article citation:
- Journal of Intellectual Disabilities, 16(2), June 2012, pp.85-95.
- Publisher:
- Sage
- Place of publication:
- London
Through medical intervention, people with intellectual disabilities now live longer in the UK and Ireland. As a consequence they are likely to have greater physical and mental health needs when compared to the general population. This review explored whether nurses have a crucial role to play in meeting such needs, and whether nurses are prepared for this role. A search was conducted for relevant English language articles dated between 1990 and 2011. Overall, there was little evidence of nurses undertaking effective interventions in meeting the health needs of older people with intellectual disabilities. Nurses have been alerted to the increase in numbers of older people with intellectual disabilities and offered some direction on their future role in this area. However, most of the current literature is based on informed opinion rather than research.
Improving the quality of life for people with learning disabilities: research into practice: conference report
- Author:
- JOINT IMPROVEMENT TEAM
- Publisher:
- Scotland. Scottish Executive
- Publication year:
- 2006
- Pagination:
- 16p.
- Place of publication:
- Edinburgh
This report summarises the presentations and discussions at a conference which focused on effective approaches in planning, commissioning and provision of services for people with learning disabilities. The main aim of the conference was to provide up-to-date evidence based on information relevant to health and social care services, and to contribute to developing a framework to support implementation of the research-based information through practice guidelines for health and social care services in this area. The report provides main points from papers presented and workshop discussions. The papers covered: supported accommodation for people with learning disabilities, community living and how well staff match people's needs, adult protection and the vulnerabilities of people with intellectual disabilities, and the impact of ageing on people with a learning disability. The report draws conclusions, and sets out key questions from the conference and next steps.
Ascertaining health-related information on adults with intellectual disabilities: development and field testing of the Rochester health status survey
- Authors:
- DAVIDSON Phillip W., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 5(1), 2008, pp.12-23.
- Publisher:
- Wiley
There is a growing need for researchers and service providers to ascertain and track health status and health care utilization among adults with intellectual disabilities as they pass through the lifespan. This paper reports the development and field testing of the Rochester Health Status Survey (RHSS), a survey instrument that identifies incidence, lifetime prevalence, and point prevalence of diseases common in adults, as well as functional abilities and medication usage. The instrument also provides information about health system access and utilization. The survey is designed to be completed from chart review. An initial version of the survey was developed in 1998, revised in 2003, and then validated on a cohort of adults ages 21 to 73 years living in supervised community residences in the U.S. The RHSS includes 51 questions and requires about 45 min to complete. In the present study, data were collected on each subject by 3 different respondents (a service coordinator, a nurse, and when available, a family member). Their responses were compared item by item with the responses of the second author, a developmental disabilities geriatrician, who also completed the survey on each subject. Correlations and Kappa statistics confirmed that the highest agreement scores occurred between nurses and the geriatrician.
Ageing and learning disability
- Author:
- HOLLAND A.J.
- Journal article citation:
- British Journal of Psychiatry, 176, January 2000, pp.26-31.
- Publisher:
- Cambridge University Press
This study aims to identify some key biological, psychological and social issues relevant to how ageing might particularly effect people with learning disabilities. Presents a selected review which considers the extent to which there are similarities and differences relative to people without learning disabilities. Findings suggest that there is a convergence, in later life, between people with a learning disability and those without. There is a lack of a concerted response to ensure that the best possible health social care is provided for people with learning disabilities in later life.
Using healthcare services: perspectives of community‐dwelling aging adults with intellectual disabilities and family members
- Authors:
- BAUMBUSCH Jennifer, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 16(1), 2019, pp.4-12.
- Publisher:
- Wiley
The aging of adults with Intellectual Disability (ID) in the community resulting from deinstitutionalization signals a need for change in healthcare policy and services. This population is growing older at rates similar to the rest of the population, and individuals with ID often have multiple chronic illnesses and may experience young‐onset dementia, increasing their need to use healthcare services. However, it is widely recognized that currently healthcare services are ill‐prepared to meet the unique needs of this population as they age in their communities. The purpose of this study was to explore this issue from the perspectives of aging individuals with ID and family members (FMs). This study employed qualitative description as the method of inquiry and took place in British Columbia, Canada. Adults with ID age 40 years and older (N = 21) and FMs (N = 26) participated. Data were collected through focus groups and semistructured interviews. Thematic data analysis was conducted to generate the main study findings. Two overarching themes were identified. First, “the organization and culture of healthcare services in the community.” This theme included issues such as age restrictions on health services, navigating health services, the culture of appointment‐making, and implications of living in rural settings, all of which influenced how individuals used healthcare services. Second, “interactions with healthcare providers” illustrated ways in which providers contribute to healthcare experiences. Many factors, both organizational and interpersonal, shape the experiences of aging individuals with ID using healthcare services in their communities. There continues to be a policy and service gap that can create unnecessary and avoidable difficulties in using healthcare services. Policies, service delivery, and education of healthcare providers need to be revisited in light of the unique needs of this population aging in the community in order to ensure healthcare is accessible. (Edited publisher abstract)
Older adults with intellectual disability: the National Institute for Health and Care Excellence (NICE) guidelines
- Author:
- STARR John M.
- Journal article citation:
- Age and Ageing, 48(1), 2019, pp.14-15.
- Publisher:
- Oxford University Press
In April 2018, the National Institute for Health and Care Excellence (NICE) published guideline NG96, Care and support of people growing older with Learning Disabilities. NICE uses the word learning disability as the label for people who have an IQ < 70 and impaired adaptive functioning before the age of 16 years. People with mild intellectual disability without an obvious syndrome, have a life expectancy similar to the general population, though they are at increased risk of dementia. The most commonly known syndrome is Down Syndrome, and although survival is expected to be poorer in later life, they can still live into their 60s. It is therefore important that clinicians who look after older adults are skilled in caring for people with more obvious forms of intellectual disability. This article provides a commentary on the NICE guideline. (Edited publisher abstract)
Aging with intellectual and developmental disabilities and dementia in Manitoba
- Authors:
- SHOOSHTARI Shahin, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 11(4), 2017, pp.134-144.
- Publisher:
- Emerald
Purpose: Information on the risk of dementia in ageing persons with intellectual and/or developmental disability (IDD) in Manitoba, Canada is lacking. The purpose of this paper is to estimate dementia prevalence in adults with IDD. Design/methodology/approach: Anonymised population-level health and non-health administrative data (1979-2012) contained in the Population Health Research Data Repository of the Manitoba Centre for Health Policy (MCHP) were linked to identify adults with IDD, and estimate the prevalence of dementia based on the presence of ICD codes. Prevalence of dementia was estimated for persons aged 18-55 years and 55+ years, and was reported by sex, type of residence, region of residence, neighbourhood income quintiles, and IDD diagnostic category. Findings: Of the 8,655 adults with IDD identified, 8.1 per cent had an indication of dementia in their medical records; an estimate three times greater than that found for those without IDD (2.6 per cent). More than 17 per cent of Manitobans with IDD aged 55+ years had an indication of dementia, which was nearly twice the rate reported previously. Of those with IDD and dementia, 34.7 per cent lived in long-term care facilities. Originality/value: Health and social support services are typically available to individuals with dementia aged 65+ years; thus, younger adults with IDD and dementia may not be eligible for those supports. To promote equity in health and access to care, dementia screening and increased supports for ageing individuals with IDD are recommended. (Edited publisher abstract)
Perspectives on ageing with a learning disability
- Author:
- WARD Cally
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2012
- Pagination:
- 15p.
- Place of publication:
- York
This Perspectives paper explored what people with learning disabilities and their families have to say about getting older, their experiences and feelings, and what is most important to them in later life. It gathered views from a range of people with learning disabilities, who often had high levels of unmet health needs as a result of the inequalities they have experienced in the health system. Contributors talk about: coming to later life with their own unique life experiences and hopes and fears for the future; the work of the Growing Older with a Learning Disability (GOLD) group and older families from the Sharing Caring Project in Sheffield; valuing the opportunity to speak for themselves, having someone spend time with them and listen to what they had to say – this was especially difficult if people have communication difficulties; and the fact that independence has brought new risks - people with learning disabilities are often exposed to bullying and hate crime.
Down syndrome health screening: the Fife model
- Authors:
- JONES Jill, et al
- Journal article citation:
- British Journal of Learning Disabilities, 38(1), March 2010, pp.5-9.
- Publisher:
- Wiley
People with Down syndrome have a greater risk of developing a range of health problems, including cardiac problems, thyroid disorders, sensory impairments, reduced muscle tone (hypotonia) and Alzheimer's disease. Despite this increased risk, regular screening is not typically offered to individuals with Down syndrome. A multidisciplinary health screening clinic was set up by a Community Learning Disability Team in Fife to offer regular health screening to people with Down syndrome. The format of the clinic, outcomes after 18 months and future service developments are discussed.
The body in health and social care
- Author:
- TWIGG Julia
- Publisher:
- Palgrave Macmillan
- Publication year:
- 2006
- Pagination:
- 198p., bibliog.
- Place of publication:
- Basingstoke
The body is central to many professional and policy concerns. Focusing on health and social care, this book shows how important the body can be to a range of issues such as disability, old age, sexuality, consumption, food and public space. Twigg shows how constructions of the body affect how we see different social groups and explores the significance of the body in the provision and delivery of care. Written in a lively and accessible style, the book offers fresh insights into classic areas of health, social care and society.