Jennie Meyer1, Joanne Mc Cullough2, Ingela Berggren3. 1. Registered Nurse, Department for Home Care, The Community of Tanum, Tanumshede. 2. Registered Nurse, Department for Home Care, The Community of Lysekil, Lysekil. 3. Associate Professor, Department of Nursing, Health and Culture, University West, Trollhättan, Sweden.
Abstract
INTRODUCTION: Caring for people affected by dementia is a collective effort that involves public health, primary care, and informal care. The third mainly comprises the efforts of spouses. AIM: This study aimed to describe spouses' experiences of living with a partner affected with dementia. METHOD: The study has a descriptive phenomenological approach based on a reflective life-world perspective. Seven in-depth interviews were conducted with spouses of persons affected with dementia. The interviews were audiotaped and analysed using the procedures described by Giorgi (2009) . FINDINGS: The essence of living with a partner affected by dementia formed a comprehensive theme: from togetherness to loneliness, which along with three descriptive categories-changes in their partner's behaviour, changes in everyday life, and a changed future-describes the phenomenon. CONCLUSION: The theme 'From togetherness to loneliness' reflects the spouses' descriptions of their life-world. Daily life changed gradually in line with their partners' personality, and their role became that of a care provider rather than a spouse. Information and knowledge about dementia should be provided at an early stage. Health care has a major responsibility to meet their needs, thus ensuring that all parties are satisfied.
INTRODUCTION: Caring for people affected by dementia is a collective effort that involves public health, primary care, and informal care. The third mainly comprises the efforts of spouses. AIM: This study aimed to describe spouses' experiences of living with a partner affected with dementia. METHOD: The study has a descriptive phenomenological approach based on a reflective life-world perspective. Seven in-depth interviews were conducted with spouses of persons affected with dementia. The interviews were audiotaped and analysed using the procedures described by Giorgi (2009) . FINDINGS: The essence of living with a partner affected by dementia formed a comprehensive theme: from togetherness to loneliness, which along with three descriptive categories-changes in their partner's behaviour, changes in everyday life, and a changed future-describes the phenomenon. CONCLUSION: The theme 'From togetherness to loneliness' reflects the spouses' descriptions of their life-world. Daily life changed gradually in line with their partners' personality, and their role became that of a care provider rather than a spouse. Information and knowledge about dementia should be provided at an early stage. Health care has a major responsibility to meet their needs, thus ensuring that all parties are satisfied.
Entities:
Keywords:
Sweden; dementia; family caregiver; loneliness; spouse
Authors: Daphne Sze Ki Cheung; Ken Hok Man Ho; Tsz Fung Cheung; Simon Ching Lam; Mimi Mun Yee Tse Journal: BMC Palliat Care Date: 2018-11-20 Impact factor: 3.234