Improving access to personalised care planning for people living with dementia: Findings from the PriDem feasibility and implementation study

Problem

There are over 900,000 people living with dementia in the UK. Post-diagnosis, care is often inadequate and poorly integrated, despite NHS England’s commitment to provision of personalised care planning that focusses on what matters to people living with dementia. Research and policy highlight the unaffordability and unsustainability of specialist-led post-diagnostic support, instead advocating a task-shared approach led by primary care. The PriDem research programme has evaluated an evidence-based intervention which aims to improve post-diagnostic care across four primary care networks (PCNs) in the northeast and southeast of England. Clinical Dementia Leads worked alongside general practice staff to upskill the workforce and develop care systems, enabling them to provide tailored care and support to people living with dementia and their carers. A key focus of this intervention was delivery of holistic dementia annual reviews and care planning, with the aim of increasing adoption of personalised care planning by participating general practices.

Approach

Seven general practices participated across four PCNs. Adoption of personalised care planning was assessed through a pre- and post-intervention audit of electronic care records. Based on a pilot audit, it was anticipated that a maximum of 40% of people living with dementia would be in receipt of a personalised care plan. Through the intervention, we aimed to increase the proportion of care plans to 50%. A sample of 215 would be sufficient to detect this change. To avoid disruptions to care related to the coronavirus pandemic, baseline audit year April 2018-March 2019 was compared with follow-up intervention year April 2022-March 2023. A stratified sampling strategy was used, based on numbers of patients registered with a dementia diagnosis at participating practices. Registered patients with a dementia diagnosis living at home at the beginning of the relevant audit period were eligible. A study-specific data extraction form, co-developed with key stakeholders, was used to record the presence/absence of care plans, the degree of personalisation based on NHS England criteria and patient and public involvement, and domains of care addressed.

Findings

Key findings will be presented, including proportions of patients with a care plan pre- and post-intervention, and the proportion of care plans judged to be personalised. Further details of care planning will be explored, including care domains covered, and degree to which care plans meet NHS England’s definition of personalised care and support planning.

Consequences

The intervention aims to improve the proportion, quality and consistency of annual dementia reviews and care plans, with increased personalisation. Aspects of the intervention are already being adopted beyond the original PCNs involved. This has implications for future dementia service commissioning, with people living with dementia and their carers benefiting from holistic, patient-centred care, in turn improving quality of life.