Success for dementia community-based end of life nurse

Data gathered over a 24 month period has shown the value of employing a dementia specialist end of life nurse based within a housing and care organisation.

Housing 21 has produced an overview of findings and learning following a pilot of its ‘Dementia Voice Nurse’ project – a specialist Westminster-based service providing care to people with dementia at the end of their lives.

The significant savings identified through the service has led to the Dementia Voice Nurse (DVN) not only becoming a core offering of the dementia support service in Westminster but also to the granting of further funding to allow Housing 21 to extend the service to two other local authority areas.

It is estimated that the DVN service wholly or partly contributed to total cost savings of more than £314K over the two years, in terms of avoided hospital, residential and nursing home admissions and ambulance services.

Other notable findings are:

  • 84% of service users were able to die in the place nominated as their preferred place
  • many service users have been able to remain in their homes for longer than they otherwise would have done
  • their diagnoses, care, medication, services and support have improved/increased including many incidences of significantly better identification and management of pain and depression
  • a number of case studies demonstrated positive responses in restoring individuals’ dignity, reducing pain, and increasing wellbeing.  For example, one lady referred to the DVN service in Westminster had only been given Paracetamol for cancer of the abdomen, hip replacement, shingles and MRSA
  • views received from family carers indicated that the DVN greatly enhanced their knowledge and understanding of the person they were caring for and gave them the opportunity to plan for end of life care
  • there have been avoidances of admissions to hospital and nursing homes
  • families have been able to recognise their relatives are nearing the end of their lives and have been given – often for the first time -  advice and information regarding planning and decision making for the future
  • some services, including those on hospital wards, have changed practices and procedures in the way they care for people with dementia following their joint working with the DVN
  • there have been improvements in communications and better co-ordination of existing services.

Rachael Dutton, research manager for Housing 21 said: “We’re very proud of the specialist Dementia Voice Nurse service and the marked difference the service has made, both for the person with dementia and for their families and carers.

“This is a unique service that has shown fantastic results and it is great that it is now achieving interest from other local authorities and primary care trusts.  This venture has had a real impact on people with dementia and their families and long may it continue.”

The need for a dementia specialist end of life care service was identified by Housing 21 staff providing dementia care services in Westminster. Resources to support people with dementia and their carers have historically been quite scarce and people with dementia tend not to be considered as terminally ill, making it very difficult to provide suitable service or prompt responses from local practices. Housing 21 was awarded funding for the initial two year pilot from the King’s Fund. 

Download a copy of the report.