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Cited by 186Healthcare Decision-Making and RestraintsDementia and Cognitive Impairment ResearchPalliative Care and End-of-Life Issues

How do persons with dementia participate in decision making related to health and daily care? A multi-case study

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Smebye, Kari Lislerud, Kirkevold, Marit, Engedal, Knut·2012·BMC Health Services Research
DOI 10.1186/1472-6963-12-241PMC PMC3475075
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Abstract

BACKGROUND: Many countries have passed laws giving patients the right to participate in decisions about health care. People with dementia cannot be assumed to be incapable of making decisions on their diagnosis alone as they may have retained cognitive abilities.The purpose of this study was to gain a better understanding of how persons with dementia participated in making decisions about health care and how their family carers and professional caregivers influenced decision making. METHODS: This Norwegian study had a qualitative multi-case design. The triad in each of the ten cases consisted of the person with dementia, the family carer and the professional caregiver, in all 30 participants. Inclusion criteria for the persons with dementia were: (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating score 2, moderate dementia; (3) able to communicate verbally. The family carers and professional caregivers were then asked to participate.A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes were written after participant observation of interactions between persons with dementia and professional caregivers during morning care or activities at a day centre. How the professional caregivers facilitated decision making was the focus of the observations that varied in length from 30 to 90 minutes. The data were analyzed using framework analysis combined with a hermeneutical interpretive approach. RESULTS: Professional caregivers based their assessment of mental competence on experience and not on standardized tests. Persons with dementia demonstrated variability in how they participated in decision making. Pseudo-autonomous decision making and delegating decision making were new categories that emerged. Autonomous decision making did occur but shared decision making was the most typical pattern. Reduced mental capacity, lack of available choices or not being given the opportunity to participate led to non-involvement. Not all decisions were based on logic; personal values and relationships were also considered. CONCLUSIONS: Persons with moderate dementia demonstrated variability in how they participated in decision making. Optimal involvement was facilitated by positioning them as capable of influencing decisions, assessing decision-specific competence, clarifying values and understanding the significance of relationships and context.

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Cited by

Sorted by citations

Authors
Smebye, K. L., Kirkevold, M., & Engedal, K.
Affiliations
  • Østfold University of Applied Sciences (NO)
  • University of Oslo (NO)
  • Oslo University Hospital (NO)
Corresponding author
Smebye, Kari Lislerud
ORCID
Venue
BMC Health Services Research
Publisher
Springer Science and Business Media LLC
Published
2012-08-07
Volume
12
Issue
1
Pages
241-241
ISSN
1472-6963 (ISSN-L)
DOI
10.1186/1472-6963-12-241
PMC
PMC3475075
OpenAlex
W1973214314
Cited by
186
References
4
Citations by year
2026: 11 · 2025: 7 · 2024: 10 · 2023: 11 · 2022: 18 · 2021: 16 · 2020: 23 · 2019: 17 · 2018: 22 · 2017: 15 · 2016: 18 · 2015: 7 · 2014: 8 · 2013: 3
FWCI
6.55
Type
journal article
Language
en
Open access
Licence
Locations
  • BMC Health Services Research (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • BIBSYS Brage (BIBSYS (Norway)) (submittedVersion, cc-by)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
  • NORA - Norwegian Open Research Archives (submittedVersion, cc-by)
Topics
  • Social Sciences › Psychology › Clinical Psychology › Healthcare Decision-Making and Restraints
  • Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Keywords
dementia, decision-making, patient participation, shared decision-making, professional caregivers, family caregivers, mental capacity assessment, autonomy, personal values, relationships, day centers, moderate dementia
MeSH terms
Activities of Daily Living, Aged, Aged, 80 and over, Decision Making, Dementia, Health Status, Humans, Norway, Outcome and Process Assessment, Health Care, Physician-Patient Relations, Psychiatric Status Rating Scales, Self Care, Mental Competency, Caregivers, Organizational Case Studies, Personal Autonomy, Qualitative Research

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