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Supporting older families: making a real difference
- Author:
- MAGRILL Dalia
- Publisher:
- Mental Health Foundation
- Publication year:
- 2005
- Pagination:
- 107p.
- Place of publication:
- London
Older families are a priority group for support, but it is important that their needs are linked in to the mainstream agendas of services for people with learning disabilities, older people and carers generally. It is important that we make sure that older families have their needs met now, and are supported to remain together for as long as they wish whilst planning for the future with confidence. However, it is equally important that we get things right for older families now so that others who are growing older do not face the same anxieties, uncertainty and fears that so many older family carers have lived with for decades.
Older adult caregivers of developmentally disabled household members: service needs and fulfillment
- Authors:
- CASERTA M.S., et al
- Journal article citation:
- Journal of Gerontological Social Work, 10(1/2), 1987, pp.35-50.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Reports on a survey to identify the need for formal support services.
Supporting you as an older family carer: a booklet to support older family carers of people with learning disabilities to get the right support now and to plan for emergencies and the long term
- Authors:
- MAGRILL Dalia, PEARCE-NEUDORF Justin
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2010
- Pagination:
- 50p.
- Place of publication:
- London
This booklet has been developed to help older family carers who are caring for people with learning disabilities to think and plan for the future as they get older. It covers: Getting the right support now; Practical support you may find useful; Preparing for emergencies; Preparing for the future. It aims to present different options and present a good starting point to finding solutions. It includes checklists and notes boxes to record information and service needs. It is one of a series of publications to come from the Mutual Caring project, set up to promote good practice and improve service provision for older families caring for people with learning disabilities.
Supporting you and your family as you grow older together: a booklet for people with learning disabilities who live at home with an older family carer
- Authors:
- MAGRILL Dalia, PEARCE-NEUDORF Justin
- Publisher:
- Foundation for People with Learning Disabilities
- Publication year:
- 2010
- Pagination:
- 30p.
- Place of publication:
- London
A practical booklet for people with learning disabilities who are cared for by an older person in their family. It aims to help the family live together now, and also to think about things that may need to be done in the future. This booklet provides: good questions to ask; things that can help you now and in the future; and some of the people who can help you. It also looks at how to get ready for emergencies. Boxes to tick and write in are included throughout the booklet, providing a useful list of things to do or find out. This is one of a series of publications to come from the Mutual Caring project, set up to promote good practice and improve service provision for older families caring for people with learning disabilities.
Parental Substitutes? The role of siblings in the lives of older people with intellectual disability
- Author:
- BIGBY Christine
- Journal article citation:
- Journal of Gerontological Social Work, 29(1), 1998, pp.3-21.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This Australian study examined the roles that siblings played in the lives of older people with intellectual disability and factors affecting this. Nearly half the sample had a sibling who acted as their primary carer after the death of the parents. However, in most cases this was not a permanent arrangement. In the long term a majority of older people did have a sibling who took responsibility for their well-being and played strong advocacy, mediator and supervisory roles. Fulfilment of such roles was associated with a lifelong close relationship between siblings.
Ignored but still in need
- Author:
- HUDSON Bob
- Journal article citation:
- Health Service Journal, 1.3.90, 1990, pp.33O-331.
- Publisher:
- Emap Healthcare
Outlines the problems faced by elderly people with a learning disability, whether in hospitals or living with their own families and outlines some solutions.
“What's going to happen when we're gone?” Family caregiving capacity for older people with an intellectual disability in Ireland
- Authors:
- BRENNAN Damien, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 31(2), 2018, pp.226-235.
- Publisher:
- Wiley
Background: Changing family sociodemographic factors, increased life expectancy for people with an intellectual disability, institutionalisation and policy prioritisation of the family as the principal care provider, presents new challenges to care sustainability. Method: A qualitative study design was employed, entailing focus groups and semistructured interviews, with purposive sampling via the parent study population of the Intellectual Disability Supplement to The Irish Longitudinal Database on Ageing. Result: The traditional sociodemographic facilitators of family caregiving are in rapid decline. Families perceived limited support from services and limited future care options. Few future care plans have been formulated. A strong possibility exists of placement of older family members with an intellectual disability in out-of-family home care. Conclusion: To anticipate and provide for quality care supports, there is a need to establish proactive initiatives, for both people with an intellectual disability and their families’, to facilitate the early formation of long-term care plans. (Edited publisher abstract)
Aging together: caring relations in families of adults with intellectual disabilities
- Authors:
- BAUMBUSCH Jennifer, et al
- Journal article citation:
- Gerontologist, 57(2), 2017, pp.341-347.
- Publisher:
- Oxford University Press
Purpose of the Study: To examine the dynamics of caring relations in older families that include an adult with Intellectual Disabilities (ID). To date, there has been very little research exploring the experiences of ageing families of community-dwelling adults with ID. Design and Methods: An exploratory, qualitative study was conducted in British Columbia, Canada. Eight participants were recruited through purposive sampling. In-depth, semistructured interviews were conducted to explore the experience of ageing concurrently with a community-dwelling relative with ID. Data were analyzed using a thematic approach. Results: Three main themes emerged: (a) Recognizing the Changes of Ageing, (b) Strengthening Connections, and (c) Planning for the Future. Implications: Ageing concurrently with a community-dwelling relative with ID is a unique experience for older adults and challenges traditional views of familial caring relations. These relationships are characterized by evolving patterns of care and exchange. There is also a sense of urgency to securing future care arrangements for the adult relative with ID. Advanced care-planning is complicated by the adult with ID’ understanding of death and dying. Family caregiving policies and practices that take into account the complexities of these relationships are needed. (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)
Commentary on “Growing older together: ageing and people with learning disabilities and their family carers”
- Author:
- THOMPSON David
- Journal article citation:
- Tizard Learning Disability Review, 18(3), 2013, pp.120-123.
- Publisher:
- Emerald
This commentary aims to support Carol Walker and Cally Ward's paper by directing readers to work which could guide their practice with older people with learning disabilities and ageing family carers. It reviews selected initiatives to support older people with learning disabilities and their family carers over the past decade. Examples from the author's personal contacts are also used to illustrate the discussion. (Edited publisher abstract)