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The roles and functions of the informal support networks of older people who receive formal support: a Swedish qualitative study
- Authors:
- DUNER Anna, NORDSTROM Monica
- Journal article citation:
- Ageing and Society, 27(1), January 2007, pp.67-85.
- Publisher:
- Cambridge University Press
Several studies of frail older people have focused on the relationship between formal and informal care, while others have examined the character of inter-generational relationships. Yet knowledge of the significance of the informal-support networks of older people who receive formal care is still scarce. The aim of this paper was to explore how older Swedes who receive formal elder-care experienced their informal support networks. The findings presented emanate from a qualitative case study. The structural, interaction and functional dimensions of the support networks were the main analytical tools. In the study population, the size of the formal support network varied from one to 12 people (or categories of people), and the size of the informal support network varied from one to six people (or categories of people). The main results demonstrate the importance of informal support with reciprocal relationships, and the value of confidants and emotional support, both of which contribute to feelings of belonging, security and wellbeing. A well-functioning formal and informal support network allows individuals to maintain autonomy in old age, even when they have to depend on help from others.
Frailty: a costly phenomenon in caring for elders with cognitive impairment
- Authors:
- BUTLER Aine, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 31(2), 2016, pp.161-168.
- Publisher:
- Wiley
Objectives: Dementia draws on a variety of public and private resources. There is increasing pressure to define the cost components in this area to improve resource allocation and accountability. The aim of this study was to characterize frailty in a group of cognitively impaired community-dwelling elders and evaluate its relationship with cost and resource utilization. Methods: The study assessed a cross-sectional, convenient sample of 115 cognitively impaired patients of age >55 years who attended the National Memory Clinic in St James' University Hospital, a Trinity College-affiliated hospital in Dublin, Ireland. Participants had a clinical diagnosis of possible Alzheimer's disease or mild cognitive impairment. Frailty was measured using the biological syndrome model. Formal health and social care costs and daily informal caregiving costs were collected and the total costs of care estimated by applying the appropriate unit cost estimate for each resource activity. Stepwise regression models were constructed to establish the factors associated with increased care costs. Results: Patient dependence, frailty and number of co-morbid illnesses explained 43.3% of the variance in observed daily informal care costs in dementia and cognitively impaired patients. Dependence was the sole factor retained in an optimal model explaining 19% of the variance in formal health and social care costs. Conclusion: Frailty retained a strong association with daily informal care costs even in the context of other known risk factors for increasing care costs. Interventions that reduce frailty as well as patient dependence on others may be associated with cost savings. (Edited publisher abstract)
The INTERLINKS Framework for long-term care of older people in Europe
- Author:
- BILLINGS Jenny
- Journal article citation:
- Journal of Integrated Care, 21(3), 2013, pp.126-138.
- Publisher:
- Emerald
Purpose - This paper describes the methodological approach to and outcomes of a European multi-consortium EU 7th Framework funded project entitled ‘INTERLINKS’. The project sought to develop a concept and method to describe and analyse long-term care and its links with the health and social care systems, and formal and informal care. Design/methodology/approach - Through the development of a template, it accumulated and validated practice examples that described good policy and practice, transferable across EU Member States. Findings - The outcome was to assemble a range of themes, sub-themes and 135 key issues into a web-based Framework for Long Term Care (LTC) that is illustrated by over a hundred examples of validated practice in LTC for older people. Research limitations/implications - Key messages emanating from the project are provided, with an emphasis on the need for greater investment and pluralist evaluation of initiatives that seek to address the interfaces and links between care services. Originality/value - The project is unique in that is provides a comprehensive and accessible interactive European database of policy and projects that directly address the problems of interfaces between service provision for older people, and contributes towards the evidence base in discrete areas of LTC. (Publisher abstract)
Integrated care for older people in Europe: latest trends and perceptions
- Author:
- LEICHSENRING Kai
- Journal article citation:
- International Journal of Integrated Care, 12(1), 2012, Online only
- Publisher:
- International Foundation for Integrated Care
This perspectives paper reflects upon the authors experience in researching long-term care, the rationale for creating integrated long-term care systems, and discusses some innovations. As a researcher and consultant he has coordinated local pilots and European research projects to improve long-term care for older people by better integrating health and social care systems. One of his main conclusions is the need to treat long-term care as a system in its own right. It is suggested that long-term care systems require a discernable identity; specific policies, structures, processes and pathways; and the leadership and resources that can underpin expectations, drive performance for better outcomes for those living with (and working for those with) long-term care needs. The author notes that progress in developing LTC systems can be identified in all European countries. Integrated care solutions at the interface of health and social care, and between formal and informal care, have appeared. He notes that these have been achieved partly by means of (slow) political reforms, partly as a response to market-oriented governance, and in many cases through pioneering community and civil society initiatives. The paper concludes that it will depend on such initiatives, and their ability to convince both citizens and policy-makers, as to whether new societal approaches to long-term care are created that meet the demands of ageing societies.
A country for old men?: an analysis of the determinants of long-term home care in Europe
- Authors:
- BALIA Sylvia, BRAU Rinaldo
- Publisher:
- Centre for North South Economic Research
- Publication year:
- 2011
- Pagination:
- 33p., bibliog.
- Place of publication:
- Cagliari
In the last few years, European and other developed countries have been undergoing population ageing due to lower fertility rates and increased life expectancy and partly driven by advances in medicine. The downside is that public and private health care expenditure are thought to increase with the number of elderly people and the average age of the population. This is particular cause for concern for the sustainability of national welfare and health care systems. This paper investigates long-term home care utilisation in Europe. It used data from SHARE on formal and informal care to study the probability and the number of hours of both types of care received. It addressed endogeneity and unobservable heterogeneity in a common latent factors framework. Findings revealed that age, disability and proximity-to death were important joint predictors of home care utilisation. Unlike some previous studies, it was found that increasing the number of hours of informal support does not lead to a reduction in formal care utilisation.
There's no place like home: place and care in an ageing society
- Author:
- MILLIGAN Christine
- Publisher:
- Ashgate
- Publication year:
- 2009
- Pagination:
- 188p.
- Place of publication:
- Farnham
This book addresses key concerns about the nature and site of care and care-giving. Following a review of research into who cares, where and how, it uses geographical perspectives to present a comprehensive analysis of how the intersection of informal care-giving within domestic, community and residential care homes can create complex landscapes of care. Case studies are used to develop a theoretical basis for a geographical analysis of the issue of care. By relating these theoretical concepts to empirical data and case studies it describes how formal and informal care-giver responses can act to facilitate or constrain the development of inclusionary models of care. Although much of the focus of this book is on the care of older people within the UK, many of the core themes and concepts discussed are of wider relevance. Chapters include: conceptualising the complex landscapes of care; who cares? people, place and gender; mapping the contours of care: international and transnational perspectives; care and home; the impact of new care technologies on home and care; care and community?; care and transition: from community to residential care; emotion and the socio-spatial mediation of care; and reconfiguring the landscape of care: porosity, integration and extitution.
Private lives and public programs: an Australian longitudinal study of the elderly
- Authors:
- MCCALLUM John, SOMINS Leon A., SIMONS Judith
- Journal article citation:
- Journal of Aging and Social Policy, 19(4), November 2007, pp.87-103.
- Publisher:
- Routledge
- Place of publication:
- Philadelphia, USA
The interaction of private lives with public programmes is examined using data from the Dubbo 13-year (1988-2001) longitudinal study of older Australians. The data indicate the strongly supportive effects of publicly funded income, health and aged care programmes in reducing family burdens resulting from major life events. In particular, financial crises were rarely mentioned, directly or indirectly, as major threats. The central role of informal social support is also demonstrated. Family support was responsive to risky events and to ageing itself, while a third of surviving older respondents were able to cope with major life changes over the lifetime of the study. A combination of welfare system and family support enabled families with older members to manage multiple, major life changes over this period. (Copies of this article are available from: Haworth Document Delivery Centre, Haworth Press Inc., 10 Alice Street, Binghamton, NY 13904-1580).
Uniting generations: studies in conflict and co-operation
- Editor:
- HORN Barbara
- Publisher:
- Age Concern
- Publication year:
- 1993
- Pagination:
- 160p.,tables.
- Place of publication:
- London
Explores the controversy surrounding targeting of income maintenance benefits and rationing of work, health and social care on the basis of age rather than need. Provides an historical context, assesses the present situation and suggests ways forward. Also looks at a number of practical schemes in which young and old people are working together for their own benefit as well as making common cause in Europe and beyond.
Integrating health care and social services for people with serious illness: proceedings of a workshop
- Author:
- NATIONAL ACADEMIES OF SCIENCES, ENGINEERING, AND MEDICINE
- Publisher:
- The National Academies Press
- Publication year:
- 2019
- Place of publication:
- Washington, DC
A growing body of research indicates that social determinants of health have a significant impact on health care utilisation and outcomes. This report summarises the discussions of a workshop on how health and social services have been integrated in health systems around the world, with a primary focus on the USA. Session 1 focuses on the rationale for integration of health care and social services for people with serious conditions, including differences in spending on health and social services in the USA compared to other nations and how expenditures on social services affect health outcomes. Session 2 looks at the roles and needs of family carers, including the emotional, physical, and financial impact of caregiving. Session 3 focuses on innovative partnerships and collaborations. These included the Programme of All-Inclusive Care for the Elderly (PACE), partnerships with community-based organisations, Community Aging in Place - Advancing Better Living for Elders (CAPABLE), as well as palliative care programs for vulnerable populations. The report is free to view online and is available to download following free registration with National Academies Press. (Edited publisher abstract)
Explaining the effects of symptom attribution by carers on help-seeking for individuals living with dementia
- Authors:
- FELDMAN Lisa, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 16(3), 2017, pp.375-387.
- Publisher:
- Sage
This study investigated the effects of carer attributions on help-seeking behaviour for people with dementia using interviews with 84 carers recruited through general practice. Memory loss was the most commonly reported first symptom but psychological and behavioural symptoms were also common at onset. In over a third of individuals help-seeking was delayed for a mean of 25 months (range 6–69, SD 19.3). Help-seeking between those who attributed symptoms to dementia, or to unknown causes, and those who attributed symptoms to personality, ageing, life events or other illnesses was statistically significant (p < 0.001). No statistically significant associations between help-seeking and patient or carer characteristics were found. There is a need to raise public awareness about the range of symptoms suggestive of dementia. Assumptions that age and other conditions may be the likely cause of an individual's cognitive decline needs to be challenged by practitioners. Attribution of symptoms to characteristics other than dementia delays help-seeking. (Publisher abstract)