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Contents

1. Introduction Ageing societies Why quality of life matters Activity fields in the care for older persons Outline of the book After a short description of the demographic transition resulting in ageing societies worldwide, the introduction will elucidate the relevance of quality of life in old age, introduce the reader to the concept of person-centered care, describe the activity fields in nursing where such care should be provided, and gives an outline of the book. 2. Quality of life in old age - a concept analysis Quality of life - confusion about a concept Quality of life as satisfying life conditions Quality of life as general well-being Quality of life as a multidimensional fulfilment of human life Quality of life - a comparison of theoretical approaches Conclusion and implications for practice Despite its widespread use the concept of quality of life in old age is far from being well defined. Based on an extensive literature research this chapter attempts to clarify the confusion about the concept. It introduces the reader to four basic meanings of quality of life that will be encountered in the literature. A comparison of these meanings and their theoretical background will result in a suggestion for a definition that is meaningful in the context of care for older persons. The definition of quality of life as a multidimensional fulfilment of human life will provide a template for the subsequent chapters of this book where the experiences of older persons with various activity fields of care will be analysed and evaluated with regard to their impact on older persons' quality of life. 3. Quality of life in the context of health promotion Health promotion - definition and approaches Health promotion from the perspective of older adults Quality of life and health promotion - recommendations for the implementation of programs Health promotion is said to be a requirement for maintaining quality of life in old age. The establishment of health promotion programs is a task of community nurses. After a short introduction to the various approaches to health promotion this chapter will explore the experiences of older persons with health promotion programs targeting the health behaviour of participants. A summary of qualitative studies illuminates expectations, triggers, obstacles and supporting factors that motivate or prevent older persons to join such programs. As it will turn out, health promotion programs should extend their aim from improving health to advancing quality of life in order to become attractive for older persons and bring about changes in their health behaviour. 4. Quality of life and the care seeking process of older persons Care dependency - a definition Care seeking as a process in response to care dependency - theoretical considerations Care seeking as perceived by older persons and their families - evidence from qualitative research Care seeking as perceived by consultants and care providers Quality of life concerns in the care seeking process - implications for care consultations Even if older persons strive to remain active and promote their health, they may become afflicted by ailments resulting in age related functional limitations and care dependency. Nurses should support their care seeking process by advice and counselling. Older persons anticipate emerging care dependency to impact on their quality of life. Hence, quality of life concerns will influence their care seeking process. After a short introduction to the concepts of care dependency and care seeking this chapter will explore how older persons confront their emerging care dependency as described by qualitative research. Their perspective will be complemented by findings from studies about the experience of care consultants who should support older persons in their care seeking process and have to react to their attitudes and expectations in their consultations. As receiving care is expected to be associated with a loss of quality of life, older adults may be inclined to deny emerging care dependency. This in turn may result in unmet needs. Based on the experience of care consultants the chapter finally provides suggestions to facilitate counselling in way that increases acceptance of care dependency Quality of life and the experience of staying in a nursing home Nursing homes - a heterogeneous concept The experience of staying in a nursing home - findings from qualitative research Receiving care Establishing social contacts and shaping one's own life Quality of life in nursing homes - implications for nursing practice Worldwide nursing homes have been established as institutions to provide care for older persons who have lost the ability to care for themselves and do not find sufficient support among their families. Due to various cultural backgrounds and economic conditions these facilities may look despite their similar function quite different. Becoming institutionalized requires a move and has a strong impact on an older person's quality of life. This chapter will summarize qualitative studies about the experience of older persons who move into nursing homes. These studies demonstrate the negative impact of institutionalized care on all dimensions of quality of life. Despite this negative outlook on nursing homes which remind several researchers to total institutions the final part of this chapter will show ways to improve quality of life in this setting that can be derived from qualitative studies. 5. Quality of life and the experience of staying in assisted living Assisted Living in the context of living and care facilities for older persons The experience of staying in assisted living - findings from qualitative research Dealing with emerging care dependency Establishing social contacts and shaping one's own life Assisted living - an alternative to nursing homes? Quality of life in assisted living - implications for practice Assisted living was established as an alternative to nursing homes. It aimed to avoid the negative aspects of institutionalisation. The proliferation of these facilities in Western countries since the eighties of the last century resulted in a variety of institutions that sometimes share only few characteristics with the original concept After an overview of the various kinds of facilities that operate under the label of assisted living, this chapter explores the experience of residents in these facilities based on a summary of qualitative research. Also here the focus is on how these facilities deal with emerging care dependency, promote social contacts and support residents in shaping their life. This allows contrasting experiences made in assisted living with experience made in nursing homes in order to answer the question of whether assisted living is able to achieve its original aim and to meet the requirements of quality of life in a better way than nursing homes. 7. Quality of life at the end of life The process of dying according to Kubler-Ross Hospice care The process of dying - findings from qualitative research The experience care at the end of life in different settings Quality of life in the process of dying - implications for clinical practice The process of dying is the final stage of life that renders older persons vulnerable and helpless. In this final stage quality of life may change its meaning but not its importance. The process of dying came into the focus of research through the work of Elisabeth Kubler-Ross. Dissatisfied with standard treatment of dying persons in medical care settings Cecil Saunders established hospice care in the UK from where the idea spread to other countries. Since these ground-breaking investigations and approaches qualitative research has advanced the knowledge about the process of dying and the care needed. After a short introduction to the theory of Kubler-Ross and the concept of hospice care, this chapter will summarize findings about the process of dying as identified by latest qualitative research. It then investigates how settings where older persons die (i.e. hospital, nursing home, hospice) may shape the experience of this process. Considering the meaning of quality of life in this process the chapter will finally identify ways of care that may facilitate quality of life as it matters for those who are dying. 8. Quality of life in the context of gerontological theories Ageing as a psycho-social problem Ageing as a process of disengagement Active and successful ageing Criticism of successful ageing from a Foucauldian perspective Alternative approaches Conclusion: Person-centered care for older adults from a multiplicity of perspectives The final chapter will turn to the broader theoretical context of ageing. Since long gerontologists have discussed the issue of good ageing and they suggested a variety of solutions. Their theories, however, were developed with regard to the social changes in industrial societies that also had an impact on the traditional role of older persons. They were intended to show ways how older persons could adapt to these changes, and they implicitly or explicitly refer to an idea about quality of life in old age. They are, however, not concerned about the role and function of nursing care in this regard. This chapter therefore will relate theories about good ageing as proposed by gerontologist to the findings about older persons' experiences with the various fields of care as described in the previous chapter. It starts with ideas about ageing that emerged after World War 2 and conceived it as problematic phenomenon as in the work of the French philosopher Jean Amery. It then turns to the competing theories of disengagement and active ageing that were both developed at the same time to show alternatives to such perceptions. The idea of successful ageing enhanced the perspective of active ageing, but critical gerontologist started to criticise it from a Foucauldian perspective. They suggest alternative approaches like the theory of selection, optimization and compensation by Baltes, Erikson's stages of psychosocial developments or Tornstam's theory of gerotranscendence. All these theories will be investigated regarding their contribution to a way of care for older persons that promotes quality of life. Ageing as a multifaceted and variable phenomenon cannot be sufficiently described by a single theory. Several theoretical approaches are needed to provide an understanding of the role of nurses in promoting quality of life in old age. Person-centered care goes beyond a single theory. Placing the individual right in the center of care requires making deliberate use of gerontological theories in order to decide which theoretical framework may provide adequate guidance for care in a specific situation.

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