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Active ageing among older adults with lifelong intellectual disabilities: the role of familial and nonfamilial social networks
- Authors:
- BUYS Laurie, AIRD Rosemary, MILLER Evonne
- Journal article citation:
- Families in Society, 93(1), January 2012, pp.55-64.
- Publisher:
- The Alliance for Children and Families
To date, there has been little research exploring the extent to which active ageing is facilitated by family and nonfamilial support persons of older adults with intellectual disabilities. This study investigated the role played by key unpaid carers of older adults with lifelong intellectual disabilities in facilitating “active ageing”. Disability service providers in Queensland and Victoria, Australia, were asked to identify service users who met the participation criteria (being over 50 and able to verbally communicate). Sixteen individuals were included in the study. Family and extended family members were found to play a crucial role in facilitating independent living and providing opportunities for recreational pursuits for those living in group homes. Members of religious organisations and group home staff provided the same types of opportunities where family support was absent. The findings highlighted the need for improvements in resource provision, staff training, and group home policy and building design.
End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services
- Authors:
- WIESE Michele, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(6), November 2012, pp.571-583.
- Publisher:
- Wiley
People with disability, including intellectual disability, are living longer. With this increased life expectancy, people with intellectual disability are outliving their parents, resulting in increased need for community living services. The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. A total of 33 staff were recruited from 3 agencies in Australia that provide community group home accommodation. The participants were required to have either experienced a death of a client or be supporting a client near the end-of-life. Focus groups were conducted with 25 of the participants and individual interviews were held with 20 of the participants. Analysis of the findings revealed 5 key issues: knowledge of dying; ethical values; the where of caring; the how of caring; and post-death caring. These issues occurred in relationship with ‘partners’, including the dying person, other clients, fellow staff, family, external health services and the coroner. The article concludes that end-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.
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.
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.