Living and dying well with dementia: Investigating a Dementia Nurse Specialist role in primary care

Problem

Dementia is a leading cause of death in older people in the UK. Research shows that people with dementia receive poorer end of life care (EOLC) than to those with cancer. Supporting Excellence in End of Life Care in Dementia (SEED) was a 5-year NIHR-funded programme which aimed to support professionals to deliver good quality, community-based care towards, and at, the EOL for people living with dementia and their families.

Approach

We drew on existing literature, qualitative research and co-design workshops with key stakeholders to develop an intervention comprising a primary care based, dementia nurse specialist (DNS) and associated resources. The DNS provided direct care to people with dementia and their families, supported professionals and promoted systems change. We assessed the feasibility and acceptability of the intervention through a pilot study with a cluster design. Two GP practices were allocated a DNS for 12 months, two further practice acted as controls, providing usual care. Eligible patients were identified using the practice dementia register and a family member and, for those in care homes, a key informant, were also recruited. Numerical data on recruitment and retention and completion of outcome measures were supplemented with qualitative data on the acceptability of study procedures and outcome assessment. Data on intervention fidelity and the acceptability of the intervention were captured through activity logs, observation of intervention delivery and interviews with people with dementia, family carers, a broad range of health and social care professionals, and the DNS.

Findings

We achieved our recruitment target of 11 people with dementia per practice; although identifying patients thought to be approaching end of life was challenging and time consuming. Only 12 patients died during the study period. The SEED intervention proved feasible and acceptable to all stakeholders; key components of the role were providing proactive care, continuity and co-ordination. Improving the local context for EOLC was achieved through development of training for care home staff and implementing a template for annual dementia reviews. None of our outcome measures were suitable as the primary outcome measure for a future trial.

Consequences

Our DNS intervention was acceptable, feasible and integrated well with existing care; importantly it was highly valued by all stakeholders. Extending the intervention to all people with dementia was widely recommended; this offers a possible solution to delivering the single, named care co-ordinator role recommended in NICE dementia guidance.