Implementing post-diagnostic support for people living with dementia in England: a qualitative study of barriers and strategies used to address these in practice

Abstract

Background inequalities and gaps in post-diagnostic support (PDS) for people with dementia persist despite a policy focus on dementia in England and Wales. Understanding and overcoming the factors contributing to these inequalities is vital to improve care for people living with dementia (PLWD) and their families. Objective to explore common barriers to the delivery of PDS in England and Wales and describe successful strategies to address them, drawing on examples from current practice. Design qualitative semi-structured interviews, focus groups and observation. Settings Phase 1: interviewees were drawn from multiple sectors across England and Wales, including NHS clinical commissioning groups and social care. Phase 2: six case study sites based in different sectors (primary care, secondary mental health and third sector) in England. Participants Phase 1: 61 professionals, including commissioners and service managers. Phase 2: 68 professionals, including frontline staff and those working in related services; 17 PLWD; 31 carers. Results barriers to implementing PDS in dementia were an unsupportive infrastructure, limited proactive review and limited capacity and capability particularly in primary care. Strategies used successfully in practice to address these challenges included creating opportunities for service development, improving joint working, supporting non-specialists and developing ongoing, holistic review and care planning. Conclusion a range of practical strategies have been identified to address many of the common barriers to PDS in dementia. To achieve policy goals of a task-shifted and task-shared approach to PDS, widespread use of these strategies is recommended.

Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

“…Case study sites varied in terms of provider (National Health Service, mental health Trust, primary care, third sector) and scope [ 19 ]. A brief description is given below:…”

“…We identified three components relating to integration, all of which are covered in national dementia guidance for England, although implementation varies [ 45 ]. We have reported on strategies to facilitate integration elsewhere [ 19 ]. These include the development of care pathways, defined as ‘organisation of care processes for a well-defined group of patients during a well-defined period’ [ 46 ].…”

“…A key strength of this work is that the components were identified through extensive qualitative research with a diverse range of providers [ 5 , 19 ], demonstrating that they can be delivered in practice. We also included a diverse range of service users in terms of age, diagnosis, time since diagnosis and living arrangements.…”

“…In Phase 2, we selected six of these services for in-depth case study, focusing on sites with clear links to primary care and which reflected the diversity of current provision of post-diagnostic support in terms of providers (primary care, secondary mental health care and third sector), components and links with other sectors and services. Further details of methods are reported elsewhere [ 5 , 19 ].…”

“…To meet the diverse needs of people with dementia and enable them to live as well as possible requires supportive government policies and coordinated input from health and social care services and the voluntary and community sector, together with initiatives such as dementia friendly communities [ 16 , 17 ]. There are, however, barriers to the delivery of integrated care including lack of funding, fragmented and fragile services, lack of shared information systems and challenges to interprofessional relationships [ 18 , 19 ]. The 2016 World Alzheimer Report recommended a task-shifted , task-shared approach with the development, and expansion, of primary and community-based post-diagnostic dementia support services, enabling secondary care to lead on diagnostic assessment and complex case management [ 1 ].…”