Dying with dementia: the views of family caregivers about quality of life

Australasian Journal on Ageing
Cherry RussellChris Shanley

Abstract

To document the views of family caregivers of persons with dementia about quality of life for their relative during the late and terminal stages of the disease, as part of an exploratory study of best quality care and support. Fifteen former caregivers (five wives, five husbands, two sons, three daughters) participated in in-depth semistructured interviews. Participants identified three main sets of indicators of quality of life: the physical body, the physical and social environment and treatment with respect and dignity. The constructs 'quality of life' and 'quality of care' tended to be conflated in the experience of caregivers. An important role for caregivers was to interpret and represent the subjective experience of the person with dementia. Quality of life needs to be understood from multiple perspectives. Caregivers' views are a central part of this understanding and should be used to inform future research and service development.

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Apr 14, 2012·Emergency Medicine International·Roberto ForeroKen Hillman
Jun 19, 2013·Palliative & Supportive Care·Genevieve N Thompson, Kerstin Roger
Jan 31, 2015·Collegian : Journal of the Royal College of Nursing, Australia·Christine StirlingAndrew Robinson
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Nov 22, 2019·Scandinavian Journal of Caring Sciences·Wendy van der Geugten, Anne Goossensen
Dec 7, 2018·The American Journal of Hospice & Palliative Care·Pamela DureposSharon Kaasalainen
Oct 15, 2021·Psychogeriatrics : the Official Journal of the Japanese Psychogeriatric Society·Yuma NagataManabu Ikeda

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