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Caring for a relative with dementia: the perceptions of carers and CPNs
- Authors:
- PICKARD Susan, GLENDINNING Caroline
- Journal article citation:
- Quality in Ageing, 2(4), December 2001, pp.3-11.
- Publisher:
- Pier Professional
- Place of publication:
- Brighton
Older people with dementia living in the community are most likely to be cared for by other older people, predominantly spouses, who will be at increased risk of stress-related health problems themselves. Appropriate support of such carers is crucial if carer breakdown and consequent care-receiver admission to residential homes is to be avoided. This paper examines the experience of older carers of frail older people with dementia and examines the kind of support that is provided to such carers. In practice, the sole source of professional support received by older people in this study was from community psychiatric nurses (CPNs). CPN' s role did not comprise hands-on care-giving and family carers carried out most personal/physical and health care tasks themselves, aided in some cases by care workers. The paper concludes by suggesting that lack of support for carers in these activities requires redress.
Outcomes-focused services for older people
- Authors:
- SOCIAL CARE INSTITUTE FOR EXCELLENCE, GLENDINNING Caroline, et al
- Publisher:
- Social Care Institute for Excellence
- Publication year:
- 2006
- Pagination:
- 134p.
- Place of publication:
- London
This project was commissioned by the Social Care Institute for Excellence (SCIE), to form the basis of practice guidance published by SCIE to support the implementation of proposals in the health and care White Paper, Our Health, Our Care, Our Say. It helped to strengthen the evidence base on how to deliver outcomes-focused services for older people and carers. The project aimed to identify: the service outcomes that were valued by older people and their carers; the organisational and other factors that helped or hindered the delivery of desired outcomes; and examples of good practice in outcomes-focused, person-centred services for older people and their carers. Outcomes' are defined as the impact, or end-results, of services on a person's life; therefore outcomes-focused services are those that aim to achieve the priorities that service users themselves identify as important. The project had two stages. The first covered research on the outcomes valued by older people and their carers; and examples of outcomes-focused practices, including changes in ways of funding, organising or commissioning services, assessment or review arrangements, or the activities of service provider organisations. A postal survey was undertaken to find out how widely outcomes-focused approaches were being developed in services for older people and carers across England and Wales, and the range of different projects or approaches involved. The study then focused on six localities in more depth, examining what changes had been made to the organisation and delivery of services; and the impact of those changes, from the perspectives of service users and carers, managers and front-line staff. The project was supported by an Advisory Group of Service Users, that met at key stages during the project. The Outcomes Network established by SPRU also contributed advice throughout the project.
Choice and change: disabled adults' and older peoples' experiences of making choices about services and support
- Authors:
- BAXTER Helen, RABIEE Parvaneh, GLENDINNING Caroline
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2011
- Pagination:
- 4p.
- Place of publication:
- York
This study explored the experiences of disabled people of working age and older who were likely to have to take frequent decisions because of their changing health status. Thirty working age and older people with fluctuating conditions and twenty with the recent sudden onset of severe impairments were recruited to the study from diverse backgrounds across England; around two-thirds remained in the study after three years. Participants were interviewed on at least three occasions between 2007 and 2010, to explore recent experiences of making choices about services including: the information and advice people sought; the options considered; the factors taken into account; the outcomes of these choices over time; and the roles played by family, friends and professionals in the choices that were made. Fifteen ‘significant others’, reported as having played an important role in a particular choice, were also interviewed. Data were analysed to identify common and contrasting patterns. Analysis addressed specific questions and drew wherever possible on data from all interview rounds to maximise the longitudinal dimension of the study. Key findings include that choice is important in maintaining health, independence and identity, but that exercising choice can be limited by lack of information or acceptable options. Implications for professionals are summarised.
Paying for care: lessons from Europe
- Authors:
- GLENDINNING Caroline, McLAUGHLIN Eithne
- Publisher:
- HMSO/Great Britain. Social Security Advisory Committee
- Publication year:
- 1993
- Pagination:
- 169p.,tables,bibliog.
- Place of publication:
- London
Comparative study looking at financial support for informal carers which has been introduced in some developed countries in the light of demographic trends experienced across Europe.
Carers' roles in personal budgets: tensions and dilemmas in front line practice
- Authors:
- MITCHELL Wendy, BROOKS Jenni, GLENDINNING Caroline
- Journal article citation:
- British Journal of Social Work, 45(5), 2015, pp.1433-1450.
- Publisher:
- Oxford University Press
Adult social care in England emphasises the service and support preferences of disabled and older people. Personal budgets play a central role in this development. Carers in England have also secured rights to assessment and support in their care-giving roles. However, these policies have developed largely separately, with little consideration of the interdependencies between disabled and older people and their carers. There is limited evidence detailing current practice. This paper explores current practice, particularly how far social care practitioners recognise and balance the needs and interests of service users and carers, especially those with cognitive and/or communication impairments. The paper reports findings from nine qualitative focus groups (forty-seven participants) conducted in 2012 with practitioners involved in service user personalisation and carer assessments from older people and learning disability teams across three English authorities. Findings indicate inconsistencies in practice. Although practitioners felt they sought to involve carers, practices varied between authorities, teams and colleagues in the same team. Clear and timely links between processes for service users and carers were absent. Practice was discussed most frequently around service user assessments; other stages of personalisation appeared ad hoc. Areas of confusion and tension are identified. Future policy and practice developments and challenges are also considered. (Publisher abstract)
Care provision within families and its socio-economic impact on care providers across the European Union
- Authors:
- GLENDINNING Caroline, et al
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2009
- Pagination:
- 4p.
- Place of publication:
- York
This is summary of a study that aimed to compile evidence on: the prevalence of long-term informal care-giving within a family setting to dependent family members or relatives in various EU countries, focusing on the most ‘heavily burdened’ carers; the socio-economic impact of care-giving on the households of family carers; and measures aimed at alleviating burdens on family carers by supporting them in the provision of care and/or compensating for the adverse socio-economic consequences of care-giving. The study used existing national and transnational sources of data, including official statistics and published primary research. Burden and socio-economic impacts of carers of older people and non-older people are discussed in separate sections. Policy and practice measures designed to support carers, rated according to the robustness of evidence also included.
Care provision within families and its socio-economic impact on care providers: report for the European Commission DG EMPL negotiated procedure VT/2007/114
- Authors:
- GLENDINNING Caroline, et al
- Publisher:
- University of York. Social Policy Research Unit
- Publication year:
- 2009
- Pagination:
- 147p., bibliog.
- Place of publication:
- York
The aims of the study were to compile evidence on: the prevalence of long-term informal care-giving within a family setting to dependent family members or relatives in various EU countries, focusing on the most ‘heavily burdened’ carers; the socio-economic impact of care-giving on the households of family carers; and measures aimed at alleviating burdens on family carers by supporting them in the provision of care and/or compensating for the adverse socio-economic consequences of care-giving. The study used existing national and transnational sources of data, including official statistics and published primary research. Burden and socio-economic impacts of carers of older people and non-older people are discussed in separate sections. Policy and practice measures designed to support carers, rated according to the robustness of evidence also included.