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Ageing carers and intellectual disability: a scoping review
- Authors:
- MAHON Aoife, et al
- Journal article citation:
- Quality in Ageing and Older Adults, 20(4), 2019, pp.162-178.
- Publisher:
- Emerald
Purpose: Individuals with intellectual disability(ies) are living longer contributing to an overall increase in the average age of caregivers. The purpose of this paper is to review the literature on the physical, social and psychological needs of ageing carers of individuals with intellectual disability(ies) in the UK. Design/methodology/approach: A scoping review framework was used to identify literature from eleven databases, the grey literature and the references lists of relevant studies. Only primary research studies that discussed the needs of non-professional carers, aged 65+ years old, of individuals with intellectual disability(ies) in the UK were included. No date restrictions were applied. Thematic analysis was used to narratively synthesise findings. Findings: Six studies were included. Five key themes were identified: Living with fear, lack of information, rebuilding trust, proactive professional involvement and being ignored. Housing and support information is not communicated well to carers. Professionals require more training on carer needs and trust must be rebuilt between carers and professionals. Proactive approaches would help identify carer needs, reduce marginalisation, help carers feel heard and reduce the risk of care crisis. Greater recognition of mutual caring relationships is needed. Originality/value: This review highlighted the needs of older caregivers for individuals with intellectual disability(ies) as well as the need for more high-quality research in this field. The information presented in this review may be considered by primary care providers and funding bodies when planning future support for this growing population of carers. (Edited publisher abstract)
People with learning disabilities and ‘active ageing’
- Authors:
- FOSTER Liam, BOXALL Kathy
- Journal article citation:
- British Journal of Learning Disabilities, 43(4), 2015, pp.270-276.
- Publisher:
- Wiley
People with and without learning disabilities are living longer. Demographic ageing creates challenges and the leading policy response to these challenges is ‘active ageing’. ‘Active’ does not just refer to the ability to be physically and economically active, but also includes ongoing social and civic engagement in the communities of which older people are a part. Active ageing should apply to all citizens, including the experiences of older people with learning disabilities. This literature based paper explores the focus of active ageing discussions in relation to the general population drawing comparisons with the experiences of older people with learning disabilities. It points out that older people with learning disabilities and their experiences are largely missing from broader policy discussions of active ageing. The paper concludes by arguing for inclusive research in active ageing which takes account of the concerns and interests of older people with learning disabilities. (Edited publisher abstract)
Ageing and people with learning disabilities: in search of evidence
- Author:
- WALKER Carol
- Journal article citation:
- British Journal of Learning Disabilities, 43(4), 2015, pp.246-253.
- Publisher:
- Wiley
Background: Growing numbers of people with learning disabilities are now living into older age. This study aims to examine the state of knowledge about their lives and the challenges that ageing has for both family carers and policymakers and practitioners. Materials and Methods: The article synthesises existing research in the fields of learning disability, ageing and family and social care with a view to learning lessons from these separate fields, identifying possibilities for collaboration and identifying gaps in knowledge. Results: The article concludes that existing research in the fields of ageing and family and social care can add significantly to an understanding of the impact of ageing on people with learning disabilities and their carers but, to date, there has been little collaboration or sharing of knowledge between the three areas. Conclusion: The article concludes that further research is required to fully understand the impact of ageing on the quality of life of people with learning disabilities and their family carers and to inform the design and delivery of services. A useful and productive way forward would be learn from and to work with researchers in cogniscent fields, notably, but not only, in the fields of social gerontology and family and social care. (Publisher abstract)
Future need of ageing people with an intellectual disability in the Republic of Ireland: lessons learned from the literature
- Authors:
- DOODY Catriona M., MARKEY Kathleen, DOODY Owen
- Journal article citation:
- British Journal of Learning Disabilities, 41(1), 2013, pp.13-21.
- Publisher:
- Wiley
This article synthesises current literature regarding ageing and service provision for people with an intellectual disability. It presents the context of intellectual disability in Ireland and ageing for people with intellectual disability in relation to increased longevity and service provision. Searches were conducted through electronic databases (EBSCO and CINAHL) retrieving literature published between 1980 and 2010. Computerised searches using the terms, ‘old age, aged, ageing, ageing, mortality, morbidity’, were used in conjunction with the terms ‘intellectual disability, mental handicap and mental retardation’. The review found that Ireland has and is seeing a dramatic change in the age profile of clients and the support services they require. While Ireland had specifically trained nurses in intellectual disability, they predominately work in residential settings. This can be seen as been at odds with the philosophy of supporting people with intellectual disability live at home with their family and the primary care system. As the ageing population is rising, intellectual disability services need to proactively develop and respond to this changing age profile by reviewing and adjusting the way in which they deliver services, not only in terms of how services develop and respond to a changing age profile but also in terms of collaborative working across all health services. (Edited publisher abstract)
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.
The internet as social support for older carers of adults with intellectual disabilities
- Authors:
- PERKINS Elizabeth A., LAMARTIN Kimberly M.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 9(1), March 2012, pp.53-62.
- Publisher:
- Wiley
Social support is a potentially powerful mediator of well-being for family carers. The internet can broaden the opportunities for ageing carers of individuals with intellectual disabilities (ID) to provide support to one another. This review examined what constitutes social support, its importance to older adults, and more specifically carers of those with ID. This review revealed a relative paucity of information regarding support on the internet for ageing carers, particularly for ageing carers for people with ID. It also found the utility of the internet to be utilised as a medium for social support groups. The authors noted that ageing adults can acquire new technological abilities and cognitive benefits when learning new skills. Both older adults and individuals with ID benefit when web sites are attentive to layout and usability. The authors concluded that Internet-based ageing carer support groups that also incorporate educational content should be developed in future.
‘I hope he goes first’: exploring determinants of engagement in future planning for adults with a learning disability living with ageing parents. What are the issues?
- Author:
- BIBBY Rita
- Journal article citation:
- British Journal of Learning Disabilities, 41(2), 2013, pp.94-105.
- Publisher:
- Wiley
The key findings from a literature review on future planning for adults with a learning disability who live with older parents and carers are presented. It is suggested that the presence of a plan for the future, formulated at a time of stability and in advance of any crisis, may lead to improved outcomes for this next phase of life. However, the take-up rate for future planning remains poor. This literature review seeks to offer an explanation for this through identifying the barriers to future planning as experienced by people with a learning disability and their older carers. The evidence suggests that there are ten key barriers to engagement in future planning. Consideration is given to each of these in turn, and a common thread is identified, that of the quality of the relationships between the families and the professionals who they come into contact with. Gaps in the research are considered, and the need for further work identified to reflect the views of black and minority ethnic families and so-called hidden families who are not known to statutory services. Also highlighted is the lack of participation in the research of those people with more severe disabilities who use alternative methods of communication. (Edited publisher abstract)
Supporting people with intellectual disabilities who challenge or who are ageing: a rapid review of evidence
- Authors:
- SLEVIN Eamonn, et al
- Publisher:
- University of Ulster
- Publication year:
- 2011
- Pagination:
- 204p., bibliog.
- Place of publication:
- Belfast
Based on a conservative estimate, 2228 people with an intellectual disability (ID) in Northern Ireland, 958 children and 1270 adults, are likely to have behaviours that challenge others. These people require significant input from services to maintain them in their own home. This report provides a review of literature in order to inform practice with 2 groups of people with IDs. The aim is to identify the supports that are required for these client populations to enable them to live in their own homes as far as is possible and to live dignified meaningful lives. Firstly, the review considers the evidence in relation to people with an ID who challenge and may have comorbid mental health problems. For this group the review considers: supporting living; day opportunities; family support; and other interventions or services that have an evidence-base applicable across settings. Secondly, the review looks at the evidence in relation to people with ID who are reaching old age and in many cases are being cared for by older caregiving family members. This is a new area of research, since more people with ID are now living into old age. For this group the review focuses on: health; aging in place; succession planning; formal service provision; and use of mainstream services. Recommendations are made in relation to practice, education and future research focused on clients, family caregivers and formal service providers.
Major health risks in aging persons with intellectual disabilities: an overview of recent studies
- Authors:
- HAVEMAN Meindert, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 7(1), March 2010, pp.59-69.
- Publisher:
- Wiley
This study examines the health-related literature on aging and intellectual disabilities (ID), with specific focus on examining findings on age-associated health risk factors, such as cardiovascular, gastrointestinal, musculoskeletal health issues, and oral health. It also examined studies of lifestyle health risks, primarily the contributions to obesity. While the review found varying differences in the frequency of health risk factors, significant evidence is appearing that cardiovascular disease is as common among people with ID and is as common a cause of death as in the general population, and that the variations in prevalence were culturally dependent. Digestive system problems were also apparent with high occurrence rates of helicobacter pylori, gastroesophageal reflux disease, and constipation. In summary the authors show that this review revealed a growing body of work on health risk factors, such as overweight and obesity, which are often linked to the onset of a variety of diseases and impairing conditions. Healthier lifestyles, better nutrition and more exercise, and greater observation of health risks were seen as ways to improve the health status of older people with ID.
Diagnostic instruments for dementia in older people with intellectual disability in clinical practice
- Authors:
- STRYDOM A., HASSIOTIS A.
- Journal article citation:
- Aging and Mental Health, 7(6), November 2003, pp.431-437.
- Publisher:
- Taylor and Francis
There is a need for simple and reliable screening instruments for dementia in the intellectual disability (ID) population that can also be used to follow their progress, particularly if they are being treated with anti-dementia drugs. Commonly used tests for the general population such as the Mini Mental State Examination (MMSE) are not appropriate for many people with ID. This paper is a literature review of alternative instruments that have been used in research or recommended by experts since 1991 and have the potential to be used as screening instruments. Two types of tests have been identified: those administered to informants, and those that rely on direct assessment of the individual. The most promising informant rated screening tool in most adults with ID including Down syndrome (DS) diagnosis is the Dementia Questionnaire for Persons with Mental Retardation (DMR). However, sensitivity in single assessments is variable and cut-off scores need further optimisation. In those with DS, the Dementia Scale for Down Syndrome (DSDS) has good specificity but mediocre sensitivity. The Test for Severe Impairment and Severe Impairment Battery are two direct assessment tools that show promise as screening instruments, but need further evaluation.