Objectives To explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers.
Design Secondary thematic analysis of 82 semi-structured interviews.
Setting Community settings across the United Kingdom.
Participants 11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff.
Results We identified three overarching themes: (1) The process of substituting self-management: stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) Communication in the care network: family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) Impact of physical health on and from dementia: healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit.
Conclusion The process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a whole, and be based on realistic outcomes and best interests.
- primary care
- qualitative research
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Contributors All authors made a substantial contribution to this work. JR, CC, KW and AB all contributed to the conception and design of the study and JR drafted the paper. All authors critically revised it and gave final approval for this version to be published. AB, ML, JB-D, PR and RHG collected the qualitative data. JR, CC, KW and AB all coded some of the interview transcripts. JR then organised the data into preliminary themes and led the subsequent analysis. CC, KW and AB further refined the thematic analysis in an iterative process.
Funding This work was supported by the Economic and Social Research Council [grant number ES/P0 0 0592/1]; and the National Institute of Health Research (NIHR) Collaboration for Leadership and Applied Health Research (North Thames). Data collection was carried out within the UCL Alzheimer’s Society Centre of Excellence for Independence at home, NIDUS (New Interventions in Dementia Study) programme (Alzheimer’s Society Centre of Excellence grant 330).
Disclaimer The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Patient consent for publication Not required.
Ethics approval London (Camden and Kings Cross) Research Ethics Services approved the study in November 2017 (reference: 17/LO/1713).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement All data relevant to the study are included in the article or uploaded as supplemental information. The qualitative data used and analysed during the current study are available from the corresponding author on reasonable request.
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