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Going for GOLD! Greater Manchester Growing Older with Learning Disabilities: an inclusive research project to reduce social isolation amongst older adults with learning disabilities
- Authors:
- CHAPMAN Melanie, et al
- Publisher:
- Manchester Metropolitan University
- Publication year:
- 2020
- Pagination:
- 56
- Place of publication:
- Manchester
This research was part of the Greater Manchester Growing Older with Learning Disabilities (GM GOLD) project, which aimed to reduce social isolation amongst older adults (aged 50+) with learning disabilities and to find out what makes somewhere an age-friendly place to live for older adults with learning disabilities. The research team of older people with learning disabilities was supported by ‘research buddies’ from Manchester Metropolitan University and the partner organisations to conduct interviews and focus groups with 59 older people (aged 50-79 years) with learning disabilities from eight Greater Manchester areas. The research shows that later life transitions for people with learning disabilities are particularly disruptive, and that they are at particular risk of social isolation and loneliness, and therefore, the potential impacts on independence and wellbeing are significant. Experiences of discrimination, segregation and low economic status may make people with learning disabilities more vulnerable to the negative impacts of growing older through the potential long-term impact on self-esteem and confidence. In addition, people with learning disabilities experience more health inequalities than the rest of the population and as a result need accessible and inclusive support throughout their lives to live healthy lifestyles to remain healthy longer. The report argues that if society, neighbourhoods and communities do not become more inclusive of people with learning disabilities, in addition to the legal, moral and ethical implications, this is likely to result in additional demand for public services. (Edited publisher abstract)
Emergent voices. Exploring the lived experience of seniors with intellectual disability
- Authors:
- HUTCHINSON Gunn Strand, SANDVIN Johans Tveit
- Journal article citation:
- European Journal of Social Work, 22(5), 2019, pp.738-748.
- Publisher:
- Taylor and Francis
In Norway, as in many European countries, there has been a major change in living conditions for people with intellectual disability over the last 30 years. State policy has changed, involving the reduction of institutional care with the aim of normalising people’s life situations and service provision. A challenge in the early years of reform was a lack of first-hand experiences. Researchers attempting to interview people with intellectual disabilities themselves about moving out of institutions concluded that this was methodologically problematic, as informants tended to answer what they thought was expected of them. While this may also reflect features of the research at that time, many of those with first-hand experiences of the reform have later confirmed that they had but a weak voice of their own. Today, their voices are stronger, and many of them provide important testimonies of the ‘true consequences’ of the reform. This article reveals some of these testimonies. Through in-depth interviews, six people with intellectual disabilities tell about their institutional lives and their present lives in the community. The strongest testimony to the reform is perhaps our informants’ ability to give words to, and reflect on, what was previously just a silent pain. (Edited 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)
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)
The need for future alternatives: an investigation of the experiences and future of older parents caring for offspring with learning disabilities over a prolonged period of time
- Authors:
- CAIRNS Deborah, et al
- Journal article citation:
- British Journal of Learning Disabilities, 41(1), 2013, pp.73-82.
- Publisher:
- Wiley
This article reports on the results of a qualitative study (in-depth interviews) carried out in the United Kingdom as part of a larger (two-phased) study investigating the experiences, health and future perspectives of older parent carers aged between 65 and 89 years (six mothers and two fathers) of offspring with learning disabilities over a prolonged period of time. The article: (i) presents a conceptual framework, grounded in the experiences of older parent carers who participated in this research and; (ii) aims to come to a more in-depth understanding of older parent carers’ experiences of caregiving, and views on their own future. A detailed analysis of the data revealed important issues with regard to prolonged caregiving. Participants responses are discussed under the following themes: a life not forseen; going it alone; reaching a decision; and nearing the end. Overall, older parent carers felt that they lacked support, information and practical resources throughout their caregiving career. Some parents continued in their caregiving role despite their deteriorating mental and/or physical health as there appeared to be no alternative, and most parent carers expressed that they were unable to think ahead to their own future and needs owing to the absence of suitable care alternatives. The findings suggest that there is an urgent need to review how individuals with learning disabilities and parent carers are supported throughout their lifespan. (Edited publisher abstract)
‘If we are going to include them we have to do it before we die’: Norwegian seniors’ views of including seniors with intellectual disability in senior centres
- Authors:
- INGVALDSEN Anne Kristen, BALANDIN Susan
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 24(6), November 2011, pp.583-593.
- Publisher:
- Wiley
The relatively recent increase in the number of aged persons with intellectual disabilities is challenging concepts of inclusion and participation. The aim of this study was to identify senior centre users’ views of the barriers and solutions to the inclusion of seniors with intellectual disability in community senior centres. Thirty seniors (mean age 75.7 years, 23 women) without intellectual disability participated in one of four focus groups. Data were analysed for major themes. These included benefits, perceptions of people with intellectual disability, barriers and solutions to inclusion, need for support and need for information. There appears to be agreement that seniors with intellectual disability could benefit from being a senior centre user. However consideration needs be given to this group’s need for assistance, staff education, economic resources and ways to overcome negative community attitudes towards people with intellectual disability.
Older parents of people who have a learning disability: perceptions of future accommodation needs
- Author:
- DAVYS Deborah
- Journal article citation:
- British Journal of Learning Disabilities, 36(1), March 2008, pp.66-72.
- Publisher:
- Wiley
The aim of this qualitative study was to provide an insight into the perceptions of older parents of learning disabled people on the future accommodation needs of their adult children. Semi-structured interviews were used to seek parental awareness of residential options available, concerns in relation to future accommodation and the preferred accommodation options for their offspring. Four couples who shared the family home with an adult who has a learning disability took part in the study and data were analysed using a step-by-step form of content analysis. Emergent themes from transcripts were then organized into main categories. The results of this study suggest that older parents are dissatisfied with both statutory and private services, that they have concerns for their nondisabled children and their own ageing. Being a parent to a person who has a learning disability is seen to be a difficult task and yet parents may want to provide support at home for as long a possible. Of the parents who participated in this study, three couples wanted to maintain their adult child at home for as long as possible and the parents who were actively seeking accommodation outside the family home expected to be involved in all aspects of their daughter's care for the long-term future.
Going with the flow: choice, dementia and people with learning difficulties
- Author:
- STALKER Kirsten
- Publisher:
- Pavilion
- Publication year:
- 1999
- Pagination:
- 48p.,bibliog.
- Place of publication:
- Brighton
Report examining some of the issues facing older people with learning difficulties and dementia. Focuses on hearing the voices of users, and exploring the extent and nature of opportunities people have to make choices about their lives.
Services for older people with learning difficulties
- Author:
- JOSEPH ROWNTREE FOUNDATION
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 1998
- Pagination:
- 4p.
- Place of publication:
- York
The number of people with learning difficulties living into old age is increasing, but little is known about how older people with learning difficulties view their changing needs, or how services and other respond to their increasing age. Outlines the findings of research with 31 older people living in a variety of settings, and members of their social and support networks, to discover what they want from services now and in the future.
Preparing for a positive future: meeting the age related needs of older people with learning disabilities
- Author:
- WARD Cally
- Publisher:
- Association for Residential Care
- Publication year:
- 1998
- Pagination:
- 211p.,list of orgs.,bibliog.
- Place of publication:
- Chesterfield
Report from a development project, Positive Futures, looking at people with learning difficulties in the context of an ageing population and at what models of service and best practice should be developed as the needs of people with learning difficulties change as they grow older. Focuses on the challenges and opportunities for commissioners and purchasers, and service providers themselves, emphasising throughout the need to listen to users. Section four contains resources and information.