Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives
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 d...
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| Format: | Article |
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BMJ Publishing Group
2020-10-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/10/10/e041873.full |
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| author | Kate R Walters Julie Beresford-Dent Jessica Laura Rees Alexandra Burton Monica Leverton Penny Rapaport Ruminda Herat Gunaratne Claudia Cooper |
| author_facet | Kate R Walters Julie Beresford-Dent Jessica Laura Rees Alexandra Burton Monica Leverton Penny Rapaport Ruminda Herat Gunaratne Claudia Cooper |
| author_sort | Kate R Walters |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-5d4f3ef896954c00a7097ca190b24ce5 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2020-10-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-5d4f3ef896954c00a7097ca190b24ce52024-11-16T16:50:08ZengBMJ Publishing GroupBMJ Open2044-60552020-10-01101010.1136/bmjopen-2020-041873Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectivesKate R Walters0Julie Beresford-Dent1Jessica Laura Rees2Alexandra Burton3Monica Leverton4Penny Rapaport5Ruminda Herat Gunaratne6Claudia Cooper71 Research Department of Population Health and Primary Care, Institute of Epidemiology & Health, Faculty of Population Health Sciences, UCL, London, UKCentre for Applied Dementia Studies, University of Bradford, Bradford, UKDivision of Psychiatry, University College London, London, UKDepartment of Behavioural Science and Health, University College London, London, UKDivision of Psychiatry, University College London, London, UKDivision of Psychiatry, University College London, London, UKDivision of Psychiatry, University College London, London, UKWolfson Institute of Population Health, Queen Mary University, London, UKObjectives 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.https://bmjopen.bmj.com/content/10/10/e041873.full |
| spellingShingle | Kate R Walters Julie Beresford-Dent Jessica Laura Rees Alexandra Burton Monica Leverton Penny Rapaport Ruminda Herat Gunaratne Claudia Cooper Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives BMJ Open |
| title | Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives |
| title_full | Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives |
| title_fullStr | Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives |
| title_full_unstemmed | Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives |
| title_short | Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives |
| title_sort | exploring how people with dementia can be best supported to manage long term conditions a qualitative study of stakeholder perspectives |
| url | https://bmjopen.bmj.com/content/10/10/e041873.full |
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