Healthcare organisation and delivery for people with dementia and comorbidity: a qualitative study exploring the views of patients, carers and professionals

Abstract

ObjectivesPeople living with dementia (PLWD) have a high prevalence of comorbidty. The aim of this study was to explore the impact of dementia on access to non-dementia services and identify ways of improving service delivery for this population.DesignQualitative study involving interviews and focus groups. Thematic content analysis was informed by theories of continuity of care and access to care.SettingPrimary and secondary care in the South and North East of England.ParticipantsPLWD who had 1 of the following comorbidities—diabetes, stroke, vision impairment, their family carers and healthcare professionals (HCPs) in the 3 conditions.ResultsWe recruited 28 community-dwelling PLWD, 33 family carers and 56 HCPs. Analysis resulted in 3 overarching themes: (1) family carers facilitate access to care and continuity of care, (2) the impact of the severity and presentation of dementia on management of comorbid conditions, (3) communication and collaboration across specialities and services is not dementia aware. We found examples of good practice, but these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD.ConclusionsThis study suggests that, in order to improve access and continuity for PLWD and comorbidity, a significant change in the organisation of care is required which involves: coproduction of care where professionals, PLWD and family carers work in partnership; recognition of the way a patient's diagnosis of dementia affects the management of other long-term conditions; flexibility in services to ensure they are sensitive to the changing needs of PLWD and their family carers over time; and improved collaboration across specialities and organisations. Research is needed to develop interventions that support partnership working and tailoring of care for PLWD and comorbidity.

Managing diabetes in people with dementia: a realist review

“…39,142 Although we found some literature on enablement for people living with dementia (see Context-mechanism-outcome 1: embedding positive attitudes towards people living with dementia), we found no evidence about how (or whether or not) a patient's previous diabetes knowledge or SM strategies are acknowledged or used by HCPs.…”

“…142 This is particularly important for people living with dementia for whom the dementia may progress in an uneven pattern of decline, 92 and for whom the transition from autonomy to delegation or caregiver-led management may be particularly difficult. 39,79,118 Regular contact may have particular advantages for people living with dementia, as illustrated by this quotation from a stakeholder interview:…”

“…The rest were a mix of designs, including feasibility studies, surveys, before-and-after studies and observational studies. Ten papers 25,28,39,42,59,64,66,83,123,142 focused on people living with dementia and diabetes; the rest were concerned with diabetes (n = 32), dementia (n = 31) or other groups, such as those with chronic illness or frailty. An overview of the selection process can be seen in Figure 5.…”

“…116,142 Current care pathways, however, lack the capacity to consistently assess SM capabilities or provide SM support. 119 This is illustrated by the following quotation:…”

“…A key element of achieving a person-centred or partnership approach to care is building a long-term trusting relationship with the people living with dementia and diabetes and their family 69,70,72,73,79,102,125,142 that involves listening and valuing the patient's subjective health experiences:…”