Exploring how people with dementia can be best supported to manage long-term conditions: a qualitative study of stakeholder perspectives

Abstract

ObjectivesTo explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers.DesignSecondary thematic analysis of 82 semi-structured interviews.SettingCommunity settings across the United Kingdom.Participants11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff.ResultsWe 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.ConclusionThe 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.

The Impact of Demographic, Socio-Economic and Geographic Factors on Mortality Risk among People Living with Dementia in England (2002–2016)

“…Different medications for dementia subtypes [56], inappropriate medications and primary healthcare use, and increased secondary healthcare contact, all impact outcomes [57][58][59]. PLWD also have high comorbidities, particularly older PLWD, emphasising how vital treating dementia and comorbidities is to maintaining health and quality of life [60,61]. Furthermore, holistic care, involving non-medicative treatments can be beneficial [62,63].…”

Perspectives of community pharmacy staff on commonly encountered skin conditions and the key challenges towards enhancing their role in dermatology

“…This survey, however, is an important conversation starter to illustrate the complexities surrounding the role of community pharmacy in skincare. A project was subsequently commissioned by the NIHR School for Primary Care Research which builds on the results of this survey and explores further some of the potential areas for research to support community pharmacies in managing skin conditions 9 …”

Exploring the provision and support of care for long-term conditions in dementia: A qualitative study combining interviews and document analysis

“…A greater understanding of the needs of people with dementia and multiple long-term conditions is required to ensure condition-specific guidelines are relevant (Scrutton & Brancati, 2016). In a recent secondary analysis of qualitative interviews, we highlighted the importance of identifying changes in self-management ability as dementia progresses to adapt care accordingly (Rees, Burton, et al, 2020). This study provided a breadth of information regarding what stakeholders consider priorities for care delivery, however few studies have explored in-depth the experiences of people with dementia and long-term conditions.…”