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Talking together: facilitating peer support activities to help people with learning disabilities understand about growing older and living with dementia
- Authors:
- TOWERS Christine, GLOVER Cindy
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2015
- Pagination:
- 56
- Place of publication:
- London
This handbook describes how to run facilitated peer support groups where people use their understanding and experiences to help each other, aiming to help people with learning disabilities experience a greater sense of well-being as they grow older. It covers starting a group; planning, starting and ending each session; and provides ideas to help people feel engaged. The handbook also outlines 20 participative activities to engage people to think and talk about the changes that may occur as they get older. The activities have been tested in group sessions in two locations: a shared house for six people with learning disabilities where one of the housemates had developed dementia and a small day centre for older people with learning disabilities where one person had dementia. (Edited publisher abstract)
Ageing, end-of-life care, and the National Disability Insurance Scheme: what can we learn from overseas?
- Author:
- WARK Stuart
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 40(1), 2015, pp.92-98.
- Publisher:
- Taylor and Francis
The author of this conceptual article was awarded a Churchill Fellowship to travel to the United States, Ireland, and United Kingdom to meet with researchers, practitioners, and community agencies and review how support for people with intellectual disability is provided. A specific focus was upon provision of care for individuals who were either ageing or requiring palliative care. The project took place from June to August 2013 and involved face-to-face interviews and site visits with key academics, government representatives, and community providers in Los Angeles, Chicago, New York, New Jersey, Dublin, Edinburgh, London, Oxford, Cambridge, Bath, Bristol, Birmingham, and Stoke-on-Trent. A priority was placed upon examining how the key features of leading practice models could be implemented within the Australian environment featuring a National Disability Insurance Scheme (NDIS). On the basis of the observations of practice, key points are discussed regarding the potential for improvements to the support of people with intellectual disability within the Australian context of the NDIS (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)
How do people with learning disabilities experience and make sense of the ageing process?
- Authors:
- NEWBERRY Gayle, MARTIN Carol, ROBBINS Lorna
- Journal article citation:
- British Journal of Learning Disabilities, 43(4), 2015, pp.285-292.
- Publisher:
- Wiley
Background: This article draws on the first author's doctoral research study which explores how people with learning disabilities experience and make sense of the ageing process and old age. Materials and Methods: Seven people with learning disabilities aged 60 or more were interviewed, and their accounts were analysed using interpretative phenomenological analysis. This approach allows the participant's lived experience to be explored in detail. Participants' accounts were analysed individually, followed by a group analysis. This article presents the results of the group analysis, illustrated by quotes from individuals. Results: The master themes arising from the group analysis were as follows: quality of relationships is central to enjoyment of life, including subthemes on the importance of affection and companionship, distress at lack of closeness and anxiety about ability to satisfy others; powerlessness; needing a sense of purpose; and making sense of getting older, including subthemes on reactions to changes with age, life review and looking to the future. Conclusions: Clinical implications of the findings include the need for services to support older people with learning disabilities in maintaining friendships and meaningful activities. This study demonstrates that some older people with learning disabilities can engage in a process of life review and raises the possibility that learning disability services could play a useful role in facilitating this process. Understanding of the ageing process varied between participants and tended towards a negative, stereotypical view of ageing. The findings suggest that people with learning disabilities could benefit from psychoeducation on the ageing process to aid them in making sense of the changes they experience as they get older. (Edited publisher abstract)
Assisting individuals ageing with learning disability: support worker perspectives
- Authors:
- WARK Stuart, HUSSAIN Rafat, EDWARDS Helen
- Journal article citation:
- Tizard Learning Disability Review, 20(4), 2015, pp.213-222.
- Publisher:
- Emerald
Purpose: While ageing with an intellectual (learning) disability has been subject to increased research in recent years, there remains little knowledge regarding the daily practice issues that disability workers struggle most to support in this cohort. This paper aims to gain feedback directly from staff regarding the problems they experience in daily work, and to evaluate whether any changes to legislation or practice could potentially alleviate identified areas of concern. Design/methodology/approach: A Delphi project was conducted over three rounds with participants from rural areas of New South Wales (NSW). The panel was composed of support workers who assist people ageing with a learning disability. Participants were asked their perceptions of the main practice issues facing them while they provide support. Findings: The panel identified 29 issues that were considered problematic in the provision of support to people ageing with a learning disability. A thematic analysis indicated three main themes of access to services; time constraints; and funding. Research limitations/implications: The participants in this study were all disability workers employed by non-government organisations in rural NSW, and as such, many of the issues identified may be specific to this population cohort and geographic setting. Any generalisation of these results to other locations or populations must be considered within these limitations. Originality/value: Identification of the issues facing disability staff may facilitate government, health care providers and disability organisations to proactively plan to address current and future problem areas. The consequent effect of improving practices can assist individuals to receive better support and lead to a corresponding improvement in their quality of life. The current implementation of the National Disability Insurance Scheme in Australia is an ideal opportunity for cross-sectoral collaboration to change practice to facilitate better support for a highly vulnerable group of the community. (Publisher abstract)
Lived experiences of ageing and later life in older people with intellectual disabilities
- Authors:
- KÅHLIN Ida, et al
- Journal article citation:
- Ageing and Society, 35(3), 2015, pp.602-628.
- Publisher:
- Cambridge University Press
Draws on the qualitative interviews with 12 people with intellectual disabilities (five men, seven women) to explore how older people with intellectual disability (ID), who live in group accommodation, describe their lived experience in relation to ageing and later life. Participants were aged between the ages of 48 and 71 (mean=64) and lived in four different group accommodation units in southern Sweden. A descriptive phenomenological analysis method was used, which disclosed a structure consisting of themes and sub-themes. The findings reveal the informants' lived experience of ageing and later life as a multifaceted phenomenon, expressed through the two themes. The first theme 'Age as a process of change’, included the sub-themes of bodily functions and health, activity and participation; and the supporting environment. The second theme ‘existential aspects of ageing’, included being old, becoming like others, and death and dying. The body is an essential element in their experience of ageing and growing old, and in how this experience is expressed. The study also found social, cultural and historical dimensions of the life-world to be important in the informants' experience of ageing and later life. This supports understanding of the existence of a collective life-world for older people with ID, the unique experiences the informants share because of their disability and its consequences for their lifecourse. (Edited publisher abstract)
Commentary on “Assisting individuals ageing with learning disability: support worker perspectives”
- Author:
- STEVENS Martin
- Journal article citation:
- Tizard Learning Disability Review, 20(4), 2015, pp.223-227.
- Publisher:
- Emerald
Purpose: This paper explores some of the themes identified by Wark et al.’s paper and to highlight commonalities and differences between the Australian and the UK social and health care regimes. It also points to evidence about other implications for policy and practice of the increasing numbers of people growing older who have learning disabilities. Design/methodology/approach: The commentary analyses some policy and practice documents and identifies a range of other research and commentary on this topic. Findings: Wark et al. have identified areas of importance for supporting older people with learning disabilities, particularly access to suitable and acceptable services and the importance of sufficient support worker time. They also identify gaps in the research on people’s needs and service responses. The commentary also highlights other factors for consideration in work with this group of people, particularly the implementation of personalisation policies in social care and integration between health and social care services. Research limitations/implications: There is a need for further research into developing policy and practice for health and social care for older people with learning disabilities. Some of the evidence supports the case for specialist involvement, particularly by nursing professionals. Originality/value: The paper and this commentary highlight the challenges associated with the increasing number of older people with learning disabilities in contemporary debates about the role of the state and professional specialists. (Edited publisher abstract)
Social work with people with learning difficulties: making a difference
- Authors:
- HUNTER Susan, ROWLEY Denis
- Publisher:
- Policy Press
- Publication year:
- 2015
- Pagination:
- 208
This book explores theoretical frameworks for working with people with learning difficulties and examines the role of services and the social worker, drawing on person-centred, community-centred and family involvement perspectives. It includes up-to-date case studies, practice examples and points for reflection. Chapters include: Transition to adulthood; Setting up a home; Getting a job: from occupation to employment; Founding families and having children; Growing older; Capacity, risk and protection; and Supporting people with complex needs. (Edited publisher abstract)
Families' experiences of seeking out-of-home accommodation for their adult child with an intellectual disability
- Authors:
- GREY Jillian M., et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 12(1), 2015, pp.47-57.
- Publisher:
- Wiley
Research exploring the experiences of families during the process of seeking out-of-home accommodation for an adult son or daughter with intellectual disability is scarce. A study was undertaken to examine this process. Nine families currently seeking out-of-home accommodation for their adult son or daughter were interviewed and interview data were analysed using thematic analysis. Two main themes were identified: (1) reasons for seeking housing and (2) experiences of seeking housing. Parents' ageing and increased health problems along with the offspring's wish for greater independence were the main reasons for seeking out-of home accommodation. Experiences of looking for a house were not straightforward in that parents often wanted to plan ahead but were prevented from doing so as the housing system prioritizes 'housing crises.' Findings showed that families experienced seeking housing as stressful and frustrating and would like to see social care and housing professionals acknowledge them as collaborative partners in the process. The authors conclude there also needs to be greater clarity of expectation of the duration of finding suitable accommodation, a process that needs to be started early in a young adult's life. (Publisher abstract)