Literature DB >> 27342441

Preparedness for Death: How Caregivers of Elders With Dementia Define and Perceive its Value.

Cynthia A Hovland-Scafe1, Betty J Kramer2.   

Abstract

Purpose: The purpose of this study is to ascertain how bereaved caregivers of a family member who died from a dementia-related diagnosis (a) define preparedness and (b) perceive its value. Design and
Methods: Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data.
Results: Only one third (n = 10) of caregivers interviewed were prepared for the death, and the majority who were prepared were enrolled in hospice. Five primary themes revealed ways that caregivers define various domains of preparedness: (i) accepting reality; (ii) knowing death is near; (iii) getting your "house in order"; (iv) saying "what you need to say"; and (v) giving "permission" to die. The majority (87%) believed that it is important for caregivers to be prepared, and the value of preparedness was exemplified in five domains reflecting the benefits of being prepared. Implications: The results support further attention to the development and testing of interventions to address the unmet needs of caregivers of family members with dementia to help prepare them for the death in a variety of contexts.
© The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Entities:  

Keywords:  Alzheimer’s; Death and dying; Dementia at end of life

Mesh:

Year:  2017        PMID: 27342441      PMCID: PMC5881688          DOI: 10.1093/geront/gnw092

Source DB:  PubMed          Journal:  Gerontologist        ISSN: 0016-9013


  31 in total

Review 1.  The ambiguous dying syndrome.

Authors:  Mercedes Bern-Klug
Journal:  Health Soc Work       Date:  2004-02

2.  Preparedness for the death of a loved one and mental health in bereaved caregivers of patients with dementia: findings from the REACH study.

Authors:  Randy S Hebert; Qianyu Dang; Richard Schulz
Journal:  J Palliat Med       Date:  2006-06       Impact factor: 2.947

3.  The impact of anticipatory grief on caregiver burden in dementia caregivers.

Authors:  Caitlin K Holley; Benjamin T Mast
Journal:  Gerontologist       Date:  2009-04-22

4.  Death preparedness: a concept analysis.

Authors:  Renee McLeod-Sordjan
Journal:  J Adv Nurs       Date:  2013-09-15       Impact factor: 3.187

5.  What questions do family caregivers want to discuss with health care providers in order to prepare for the death of a loved one? An ethnographic study of caregivers of patients at end of life.

Authors:  Randy Scott Hebert; Richard Schulz; Valire Copeland; Robert M Arnold
Journal:  J Palliat Med       Date:  2008-04       Impact factor: 2.947

6.  Challenges Facing Families at the End of Life in Three Settings.

Authors:  Karen A Kehl; Karin T Kirchhoff; Betty J Kramer; Cyndi Hovland-Scafe
Journal:  J Soc Work End Life Palliat Care       Date:  2009-07-01

7.  Terminal care for persons with advanced dementia in the nursing home and home care settings.

Authors:  Susan L Mitchell; John N Morris; Pil S Park; Brant E Fries
Journal:  J Palliat Med       Date:  2004-12       Impact factor: 2.947

8.  End-of-life care and the effects of bereavement on family caregivers of persons with dementia.

Authors:  Richard Schulz; Aaron B Mendelsohn; William E Haley; Diane Mahoney; Rebecca S Allen; Song Zhang; Larry Thompson; Steven H Belle
Journal:  N Engl J Med       Date:  2003-11-13       Impact factor: 91.245

9.  Patients dying with dementia: experience at the end of life and impact of hospice care.

Authors:  Joseph W Shega; Gavin W Hougham; Carol B Stocking; Deon Cox-Hayley; Greg A Sachs
Journal:  J Pain Symptom Manage       Date:  2008-02-08       Impact factor: 3.612

10.  Caregivers' understanding of dementia predicts patients' comfort at death: a prospective observational study.

Authors:  Jenny T van der Steen; Bregje D Onwuteaka-Philipsen; Dirk L Knol; Miel W Ribbe; Luc Deliens
Journal:  BMC Med       Date:  2013-04-11       Impact factor: 8.775

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  5 in total

1.  Restorative activities among bereaved caregivers of nursing home patients.

Authors:  Sarah T Stahl; Richard Schulz
Journal:  Geriatr Nurs       Date:  2018-02-21       Impact factor: 2.361

2.  Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies.

Authors:  Marcus Sellars; Olivia Chung; Linda Nolte; Allison Tong; Dimity Pond; Deirdre Fetherstonhaugh; Fran McInerney; Craig Sinclair; Karen M Detering
Journal:  Palliat Med       Date:  2018-11-08       Impact factor: 4.762

3.  Practical and emotional preparation for death: A mixed methods study investigating experiences of family carers of people with dementia.

Authors:  Emily Fisher; Sophie Crawley; Elizabeth L Sampson; Claudia Cooper; Rebecca Jones; Kanthee Anantapong; Kirsten Moore
Journal:  Dementia (London)       Date:  2022-02-07

4.  The role of the memory service in helping carers to prepare for end of life: A mixed methods study.

Authors:  Kirsten J Moore; Hannah Goodison; Elizabeth L Sampson
Journal:  Int J Geriatr Psychiatry       Date:  2018-12-18       Impact factor: 3.485

5.  Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia.

Authors:  Pamela Durepos; Noori Akhtar-Danesh; Jenny Ploeg; Tamara Sussman; Sharon Kaasalainen
Journal:  Palliat Med       Date:  2021-02-23       Impact factor: 4.762

  5 in total

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