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Joint position statement on carers with learning disabilities from the Princess Royal Trust for Carers, Crossroads Care, Mencap, the National Family Carer Network, Who Cares for Us? and Respond
- Authors:
- PRINCESS ROYAL TRUST FOR CARERS, CROSSROADS CARE
- Publisher:
- Princess Royal Trust for Carers
- Publication year:
- 2010
- Pagination:
- 4p.
- Place of publication:
- Woodford Green
This easy read joint position statement was created to help organisations who help carers with learning disabilities to work better together and to help other people to understand the lives of carers with learning disabilities. Using brief bullet points the statement describes what a carer with a learning disability is; explains why it is difficult to know how many carers with learning disabilities there are; what they want; how they could be better supported; and the organisations that currently support them.
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.
Supporting carers to care in a crisis: an analysis of additional service provision essential to carers of people with learning disabilities
- Author:
- DAVIES Rebecca
- Journal article citation:
- Llais, 98, Winter 2010, pp.14-17.
- Publisher:
- Learning Disability Wales
Research into how unpaid carers for people with learning disabilities cope with 'crisis' in their lives and the lives of those they care for was commissioned by Gwalia Housing in Wales. Twenty four carers who had experienced a crisis situation were interviewed. Although carers feedback found great variation in carers experience and definitions of crisis, the most frequent theme was that a crisis was something that stopped carers carrying out their duties. Carers were also asked about their experience of services and how they could help in crisis. The article concludes with a number of recommendations for practice.
Reliance on carer reports of early symptoms of dementia among adults with intellectual disabilities
- Authors:
- JAMIESON-CRAIG Rebekah, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 7(1), March 2010, pp.34-41.
- Publisher:
- Wiley
This study examined carer-reported symptoms to determine whether carer reports of decline in function would be a better screening method to detect possible cases of dementia than reports of memory decline in older adults with ID. One hundred and fifty four participants from five London boroughs were reassessed along with their carers two to three years after baseline. A questionnaire for carer-reported change in everyday function and the Dementia Questionnaire for Persons with Mental Retardation (DMR) were used to gauge carer views of everyday function and memory. Participants who developed dementia displayed both everyday function and memory decline, where decline in function appeared to be the best indicator of new dementia cases. Retrospective carer report of change in everyday function was shown to be as good as prospective ratings to identify dementia. In those with mild ID, memory change was a better indicator of dementia, while in those with more severe ID decline in everyday function was a better indicator. The authors concluded that decline in everyday function appeared to be a better screening method for dementia than memory decline, particularly for participants with moderate to severe ID.
Turn your life around: person centred planning and families
- Authors:
- GREAT BRITAIN. Department of Health. Valuing People Support Team, (Producer)
- Publisher:
- Great Britain. Department of Health. Valuing People Support Team
- Publication year:
- 2010
- Pagination:
- DVD
- Place of publication:
- London
A short film aimed at carers which presents the story of two families and their experiences of person centred planning. The DVD also contains background information about person centred planning and contacts for further information.
Why some adults with intellectual disability consult their general practitioner more than others
- Authors:
- TURK V., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 54(9), September 2010, pp.733-842.
- Publisher:
- Wiley
A secondary analysis was undertaken of data obtained from a stratified randomised sample of adults with intellectual disabilities (AWIDs) participating in a cluster randomised trial of hand held health records. Two hundred and one AWIDs and/ or their carers from 40 GP practices across two London boroughs participated (response rate 64.6%), with GP consultation data extracted for 187 AWIDs. AWIDs and their carers were given separate health interviews using identical/adapted questions where possible. Overall consulting levels were lower than expected; 3.2 per annum for women and 2.2 for men. Increased age, gender (women) and type of carer (paid) were all significantly associated with increased consultations. Carers reporting health problems, medications reported by AWIDs, medications recorded in GP records, and pain reported by AWIDs also affected consultations after adjustment for age and type of carer. It is suggest that targeted interventions are needed to improve attendance and promote health.
Effective communication training interventions for paid carers supporting adults with learning disabilities
- Authors:
- KYLE Seonaid, MELVILLE Craig A., JONES Andrea
- Journal article citation:
- British Journal of Learning Disabilities, 38(3), September 2010, pp.210-216.
- Publisher:
- Wiley
Carer communication skills contribute to the well being of individuals with learning disabilities. In order to meet the health needs of adults with learning disabilities, the provision of communication skills training for carers and professionals is important. This study developed and investigated the psychometric properties of a communication self-efficacy measure, the Glasgow-Communication Efficacy Scale (G-CES), for use with carers and professionals attending communication training interventions relevant to working with individuals with learning disabilities. The research team developed the G-CES based on their experience of delivering communication training, and working with adults with learning disabilities in clinical settings. The G-CES is designed as a self-report measure which measures self-efficacy across key areas of communication. A pre-post intervention study design was used to examine the reliability and sensitivity to change of the G-CES. Twenty-six paid carers who support adults with learning disabilities completed the G-CES before and after participating in a communication training intervention. The results showed that the scale had good internal and test-retest reliability. Carer communication efficacy increased after taking part in the training. Use of the G-CES in clinical services and research studies can help to develop the evidence base on the effectiveness of communication training interventions relevant to working with persons with learning disabilities.
Mainstream in-patient mental health care for people with intellectual disabilities: service user, carer and provider experiences
- Authors:
- DONNER Ben, MUTTER Robin, SCIOR Katrina
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 23(3), May 2010, pp.214-225.
- Publisher:
- Wiley
Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. This study aimed to explore how people with intellectual disabilities fare in such services, by examining how service users with intellectual disabilities, their carers and service providers perceive mainstream in-patient mental health services, and to what extent their accounts are in line with key policy objectives. Face-to-face interviews with 9 service users, 9 carers and 4 community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers. The positive aspects of admission included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities. The article concludes that, while there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realising aims of easy accessibility, person-centred practices and active partnership with intellectual disability services.
Carer satisfaction with telephone consultations in a community intellectual disability unit
- Authors:
- BAINS Harinder, BONELL Enrique, SPEIGHT Peter
- Journal article citation:
- Journal of Intellectual Disabilities, 14(4), December 2010, pp.259-265.
- Publisher:
- Sage
- Place of publication:
- London
Telephone consultations have been shown to reduce the number of surgery contacts and out-of-hours visits. However, previous studies in general practice settings have shown patient dissatisfaction with a model based on telephone consultations. This paper reports on a survey of carer satisfaction with telephone consultations with doctors in a community service in Lincolnshire, England, for people with learning disabilities. Eleven participants returned a 10-item carer satisfaction questionnaire following telephone consultations over a 4 week period with questions about suitability, effectiveness, efficiency and appropriateness of telephone consultations. Findings indicated a high level of satisfaction with accessibility, effectiveness and suitability. Also, telephone consultations were an efficient use of time. However more than one-third of carers said they would have preferred a face-to-face consultation with the doctor. The paper concludes that, although routine practice in psychiatry, telephone consultations need further research to establish them as an alternative to face-to-face consultations.