Life stories as a tool for preserving autonomy and dignity in people with dementia
Authors:
Lenka Horáková; Rastislav Ostříž; Iva Holmerová
Authors‘ workplace:
Fakulta humanitních studií UK v Praze
Published in:
Čas. Lék. čes. 2026; 165: 156-158
Category:
Review Article
Overview
The life story represents a useful tool that enables people living with dementia to better preserve their identity and sense of continuity, that is, the connection between who they were and who they still are. At the same time, they provide care providers with a deeper understanding of the needs and values of people with dementia and enable the provision of care that is truly individualized, sensitive, and respectful. In practice, information from life stories is used as a valuable source of knowledge for care planning. However, this approach raises several ethical questions. Who has the right to tell the story? Who decides on its form and content? The aim of this article is therefore to reflect on the aspects of working with life stories in relation to the dignity and autonomy of people with dementia.
Keywords:
dementia – autonomy – dignity – life story
Sources
- Jarolímová E. Komunikace se seniory s demencí. In: Georgi H, Dragomirecká E, Jarolímová E (eds.). Psychologie stárnutí a stáří. Grada, Praha, 2024 : 115–119.
- Listina základních práv a svobod 1993. Dostupné na: www.zakonyprolidi.cz/cs/1993-2
- Procházková E. Biografie v péči o seniory. Grada, Praha, 2019.
- Kalvach Z. Medicína dlouhodobé péče. Grada, Praha, 2025.
- Legal capacity and decision making. The ethical implications of lack of legal capacity on the lives of people with dementia: summary report. Alzheimer Europe, 2020. Dostupné na: www.alzheimer-europe.org/sites/default/files/2021-11/Alzheimer Europe summary on 2020 Report Legal capacity and decision making summary.pdf
- Heersmink R. Preserving narrative identity for dementia patients: embodiment, active environments, and distributed memory. Neuroethics 2022; 15 : 1–16.
- Wilkins JM. Narrative interest standard: a novel approach to surrogate decision-making for people with dementia. Gerontologist 2018; 58 : 1016–1020.
- Dostálová V, Bártová A, Bláhová H et al. The experiences and needs of frail older people receiving home health care: a qualitative study. Int J Older People Nurs 2022; 17 : 1–10.
- Villar F, Serrat R, Bravo-Segal S. Giving them a voice: challenges to narrative agency in people with dementia. Geriatrics 2019; 4 : 20.
- Berendonk C, Caine V. Life story work with persons with dementia in nursing homes: A Grounded Theory study of the perspectives of care staff. Dementia 2019; 18 : 282–302.
- Thoft DS, Møller AK, Møller AKK. Evaluating a digital life story app in a nursing home context – a qualitative study. J Clin Nurs 2022; 31 : 1884–1895.
- Chelberg K. ‘Vulnerable monsters’: constructions of dementia in the Australian Royal Commission into Aged Care. Int J Semiot Law 2023; 36 : 1557–1580.
- Sedláčková KB, Bártová A, Holmerová I. Feeling lonely, isolated and depressed. Older adults’ feelings in long-term term facilities: a scoping review. J Popul Ageing 2024; 17 : 861–914.
- Ethical dilemmas faced by health and social care professionals providing dementia care in care homes and hospital settings. A guide for use in the context of ongoing professional care training. Alzheimer Europe, Luxembourg, 2015. Dostupné na: www.alzheimer-europe.org/sites/default/files/alzheimer_europe_ethics_report_2015.pdf
- Guidelines for the ethical and inclusive communication about/portrayal of dementia and people with dementia” for the media, researchers, journalists, policy makers and anyone responsible for the portrayal of or communication about dementia. Alzheimer Europe, Luxembourg, 2022. Dostupné na: www.alzheimer-europe.org/sites/default/files/2023-01/Alzheimer Europe and European Working Group of People with Dementia Guidelines for the ethical and inclusive communication about portrayal of dementia and people with dementia.pdf
- Arcand M. End-of-life issues in advanced dementia. Part 1: goals of care, decision-making process, and family education. Can Fam Physician 2015; 61 : 330–334.
- Guide on the decision-making process regarding medical treatment in end-of-life situations. Council of Europe, 2014. Dostupné na: https://rm.coe.int/CoERMPublicCommonSearchServices/DisplayDCTMContent?documentId=090000168039e8c5
Labels
Addictology Allergology and clinical immunology Angiology Audiology Clinical biochemistry Dermatology & STDs Paediatric gastroenterology Paediatric surgery Paediatric cardiology Paediatric neurology Paediatric ENT Paediatric psychiatry Paediatric rheumatology Diabetology Pharmacy Vascular surgery Pain management Dental HygienistArticle was published in
Journal of Czech Physicians
-
All articles in this issue
- Úvodem
- Editorial
- Effects of different types of ionizing radiation on DNA from the perspective of medicine and planned piloted interplanetary flights
- et al. Radiation emergency – guidelines for the public
- Prof. MUDr. Ferdinand Herčík, DrSc., iniciátor radiobiologie v Československu
- 100 let od narození profesora Zdeňka Dienstbiera
- Anaphylaxis – myths and facts
- New paradigm of therapeutic antibiotic monitoring
- New-onset sexual dysfunction in men: cardiometabolic associations and a practical outpatient approach
- The advance directives institute in the context of discussions on assisted dying
- Life stories as a tool for preserving autonomy and dignity in people with dementia
- Obligations of healthcare providers when using artificial intelligence systems under the AI Act
- Implementace nařízení SoHO a řízení systému odběrů plazmy v Česku – diskuse a stanovisko mezioborového panelu
- Ernst Wodak – a world-leading vestibulologist of Czech descent, completely forgotten in his native country
- Blahopřání prof. MUDr. Tomáši Zimovi, DrSc., MBA
- 70 let profesora Milana Kvapila
- Profesorka Eva Králíková slaví narozeniny
- Purkyňova cena udělena profesoru Jiřímu Rabochovi
- Prof. MUDr. Vladimír Palička, CSc., dr.h.c., osmdesátiletý
- Journal of Czech Physicians
- Journal archive
- Current issue
- Online only
- About the journal
Most read in this issue
- New-onset sexual dysfunction in men: cardiometabolic associations and a practical outpatient approach
- Effects of different types of ionizing radiation on DNA from the perspective of medicine and planned piloted interplanetary flights
- New paradigm of therapeutic antibiotic monitoring
- et al. Radiation emergency – guidelines for the public