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Dementia Care pp 189–214Cite as

Experiences and Perspectives of Family Caregivers of the Person with Dementia

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Abstract

The concepts of intergenerational equity, relational reciprocity and the dynamics of familial caregiving have long been a source of inquiry for social scientists, health care advocates and wellness experts. Like knowledge of the various dementias themselves, the body of information about the perceived experience of caring for a family member(s), with an Alzheimer’s type dementia, has been amassed over the last 20 years.

This chapter will discuss the profile of the contemporary family caregivers for persons with cognitive impairment. It briefly surveys the diversity that exists, among people who assume, or inherit a caring or care coordination role within a family. Commonalities, shared experiences and normative benchmarks for the likely course of caring for a cognitively impaired family member will be examined from six perspectives using the words of actual families it illustrates the realities of dementia care. These perspectives are physical care, lifestyle changes, emotional and psychological needs of the ill person and their carers, relational changes, pragmatic (legal and financial) dimensions and ethical decision-making dilemmas. The phases families encounter, during a journey with dementia, parallels the progression of illness over time, and has been referred to, in lay person terms, as “First Fear to Last Tear” [Bretcher (Alzheimer’s Association, Saint Louis Chapter; 2013)]. The impact on caregivers, from disease related experiences, across the continuum of long term dementia care, will be examined in terms of their negative or positive influence on well-being.

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Author information

Authors and Affiliations

  1. Dolan Memory Care Homes, Saint Louis, MO, USA

    Janis McGillick (Director of Community Engagement)

Authors
  1. Janis McGillick
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  2. Maggie Murphy-White MA
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Correspondence to Janis McGillick .

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Editors and Affiliations

  1. William F. Connell School of Nursing, Boston College, Chestnut Hill, Massachusetts, USA

    Marie Boltz

  2. Charles E. Schmidt College of Medicine, Florida Atlantic University, NEW YORK, Florida, USA

    James E. Galvin

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McGillick, J., Murphy-White, M. (2016). Experiences and Perspectives of Family Caregivers of the Person with Dementia. In: Boltz, M., Galvin, J. (eds) Dementia Care. Springer, Cham. https://doi.org/10.1007/978-3-319-18377-0_12

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  • DOI: https://doi.org/10.1007/978-3-319-18377-0_12

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-18376-3

  • Online ISBN: 978-3-319-18377-0

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