Annika Taghizadeh Larsson

‘How are decisions on care services for people with dementia made and experienced? A systematic review and qualitative synthesis of recent empirical findings’

BACKGROUND During recent decades, there has been a growing recognition that people cannot be assumed incapable of making decisions about their own care solely on the basis of a dementia diagnosis and international agreements and legislative changes have strengthened the formal right for people with dementia to participate in decisions on care services. This raises important questions about how these decisions are currently made and experienced in practice. In this review, we address this question and highlight directions for further research. METHODS We searched CINAHL, PsycINFO, ASSIA, Social Services Abstracts, Science Direct, Academic Search Premier, and PubMed. Twenty-four pertinent articles were identified, all representing qualitative studies. Relevant findings were extracted and synthesized along dimensions of involvement of the person with dementia in decisions on care services, using an integrative approach to qualitative synthesis. RESULTS We identified three overarching ways in which people with dementia are involved, primarily, in the informal part of a process of decisions: excluded, prior preferences taken into account, and current preferences respected. Several (10) articles seemed to be based on the assumption that decisions on care services are invariably and solely made within the family and without participation of the person with dementia. CONCLUSIONS The review emphasizes the need for more updated research about international debates and agreements concerning capabilities and rights of people with dementia and about the (potential) formal contexts of care decisions in the country concerned. This, we argue, is vital for future knowledge production in the area.

A Long Life With a Particular Signature: Life Course and Aging for People With Disabilities

What does it mean to live a long life and grow old with disabilities? Or to be an aging parent and still be a caregiver to a disabled adult child? These are questions discussed in this article, the aim of which is to show how a life course perspective adds insight to the lived experience of disability and ageing of adults with disabilities. It is argued that the time concept is fundamental to the understanding of the lives of disabled people. Results are presented which challenge established knowledge regarding disability policies, autonomy, body, biographical disruption and prerequisites of active aging.

Family as failure? The role of informal help-givers to disabled people in Sweden

Based on a survey mapping all unpaid help and care work in the county of Stockholm, this article focuses on the informal help and care carried out for long-term ill and/or disabled people aged 64 or younger. The findings indicate that these forms of support are common and that the informal help-givers work many hours every month. Yet the impact of this work is quite invisible in texts on disability policy and there is a void of research addressing this issue. This article argues that, in spite of welfare state arrangements and reforms, families play a crucial role in providing resources, notably help and care for disabled family members. Their invisibility is interpreted as an expression of the fact that the care concept has become politically incorrect. In the light of modern disability policies, with its ideals of autonomy and empowerment, help and care provided by families to adults aged 64 or younger stand out as a dilemma and a contradiction. Making help and care provided by families invisible can be interpreted as one way of solving this contradiction.

To protect and to support: How citizenship and self-determination are legally constructed and managed in practice for people living with dementia in Sweden.

Since living with dementia implies increasing difficulties in taking charge of rights due to cognitive as well as communicative impairments, many people with dementia are vulnerable and in need of support in order to realize full citizenship. In Sweden, all adults right to self-determination is strongly emphasized in law, regulations, and policies. Further, and in contrast to the situation in many other countries, people living with dementia cannot be declared as incompetent of making decisions concerning social care and their right to self-determination cannot legally be taken away. The article shows that in the Swedish welfare system, the focus is more on protecting the self-determination of citizens than on supporting people in making decisions and exercising citizenship. Subsequently, this causes legally constructed zones of inclusion and exclusion. This article examines and problematizes how different institutional contexts, legal constructions, norms, and practices in Sweden affect the management of issues concerning guardianship, supported decision-making and self-determination, and outline the implications for people living with dementia.

Ageism in Health Care: A Systematic Review of Operational Definitions and Inductive Conceptualizations

PURPOSE International and national bodies have identified tackling ageism in health care as an urgent goal. However, health professionals, researchers, and policy makers recognize that it is not easy to identity and fight ageism in practice, as the identification of multiple manifestations of ageism is dependent on the way it is defined and operationalized. This article reports on a systematic review of the operational definitions and inductive conceptualizations of ageism in the context of health care. DESIGN AND METHODS We reviewed scientific articles published from January 1995 to June 2015 and indexed in the electronic databases Web of Science, PubMed, and Cochrane. Electronic searches were complemented with visual scanning of reference lists and hand searching of leading journals in the field of ageing and social gerontology. RESULTS The review reveals that the predominant forms of operationalization and inductive conceptualization of ageism in the context of health care have neglected some components of ageism, namely the self-directed and implicit components. Furthermore, the instruments used to measure ageism in health care have as targets older people in general, not older patients in particular. IMPLICATIONS The results have important implications for the advancement of research on this topic, as well as for the development of interventions to fight ageism in practice. There is a need to take into account underexplored forms of operationalization and inductive conceptualizations of ageism, such as self-directed ageism and implicit ageism. In addition, ageism in health care should be measured by using context-specific instruments.

Ageism and the rights of older people

This chapter critically examines established attempts to counter ageism, highlighting how they have failed to include the so-called fourth age, and might instead contribute to further stigmatization of older people with impairments and care needs. Drawing upon models from disability policies, an equal rights framework will be introduced that could be used to combat discrimination and improve everyday conditions of older people in need of long-term care. In this chapter, the equal rights framework will call into question existing cases of “institutional ageism” whereby older people with impairments are excluded from government programs benefiting younger people with disabilities. Instead of acting as a normative reference group, as the standard that older persons may fail or manage to live up to, it is possible to use the third age as a comparative reference group. We argue that society should make available for older persons with impairments living conditions and lifestyles that are typical for healthy active seniors, that is, for the group of older people that are commonly referred to as constituting the third age. These conditions and activities should then not be regarded as normative, but as typical, and thus possible to refer to when defining social rights.

Researching Ageism in Health-Care and Long Term Care

The literature across different fields defines ageism ambiguously and widely covers a span of intolerant knowledge, values, attitudes and behaviors towards older adults or more generally toward people of a certain age. In this chapter we provide an overview of how ageism is defined, measured, and assessed in health care and long-term care. In so doing, we aim to bridge the gap between the concept and measurement of ageism in these two contexts and to provide some general insights into the approaches, which researchers can apply to assess ageism in these settings. In this chapter, we therefore aim to answer the following questions namely (i) Why is it important to know how ageism in healthcare and long-term care has been empirically studied? (ii) What evidence for the existence of ageism among key stakeholders (e.g. health care professionals and long-term care workers, family members and older adults) is reported in empirical research covering these two contexts? and (iii) Which are the conceptual and methodological approaches used to measure and assess ageism involving these key stakeholders in the two contexts?

Behind the Youthful Facade: The Church of Sweden Abroad and Its Older Visitors and Volunteers

This article addresses the role of the Church of Sweden Abroad, with its 45 parishes in foreign countries, for older Swedes who live or stay abroad, permanently or for long or short periods. The article is based on a research project comprising three studies: a qualitative study, an analysis of websites and information material, and an Internet-based survey. The results highlight the important role played by the parishes for older visitors, in terms of providing community, support, and religious services. However, people above the age of 65 were virtually invisible on the church websites and in other information material. This paradox is discussed and the concept of ageism is used in the analysis.This article addresses the role of the Church of Sweden Abroad, with its 45 parishes in foreign countries, for older Swedes who live or stay abroad, permanently or for long or short periods. The article is based on a research project comprising three studies: a qualitative study, an analysis of websites and information material, and an Internet-based survey. The results highlight the important role played by the parishes for older visitors, in terms of providing community, support, and religious services. However, people above the age of 65 were virtually invisible on the church websites and in other information material. This paradox is discussed and the concept of ageism is used in the analysis.