Dementia Voice Nurse evaluation

An evaluation of Housing 21's Dementia Voice Nurse pilot project has highlighted the need to raise awareness among family carers, care staff and other professionals of how to recognise when people with dementia are nearing the end of their lives, and the actions that need to be taken at that time.

The findings follow the evaluation of the first twelve months of our specialist service to provide care to people with dementia at the end of their lives. Whilst the Westminster-based service has had a positive impact on the quality of care and circumstances for people with dementia and their families, it has revealed a lack of understanding amongst some professionals in the care of people with dementia as they near the end of their lives.

Notable findings are:

  • The management of pain is particularly poor with some families and professionals mistakenly believing that people with dementia do not feel pain.
  • Different practices between care providers are causing confusion with family carers.
  • A lack of discussion at an early stage around advance care planning.
  • Lack of confidence among housing providers in the handling or discussion of end of life care issues.

The need for a dementia specialist end of life care service had been identified by Housing 21 staff providing services from Tresham Dementia Services Resource Centre in Westminster. They were regularly working with people with dementia and their families in their homes at the very end of their illness and were frequently providing the only palliative care available. 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.

Morejoy Saineti took on the role of Dementia Voice Nurse towards the end of 2008 following Housing 21's award of funding for the two year pilot project from the King's Fund.  Commenting on her first year she said:

   "As people with dementia approach the end of their life their needs become multiple and
   complex. It's not uncommon for carers to receive little or no nursing back up and for the
   person with dementia to miss out on appropriate end-of-life support.

   "A crucial part of my role is to co-ordinate services and provide a consistent link with GPs,
   primary health care practitioners and other agencies so that together we can achieve the best
   possible care for people with dementia."

The evidence gathered from the evaluation to date shows that the Dementia Voice Nurse has filled an important gap in the sourcing and coordination of existing services leading to improvements in the care and wellbeing of people with dementia and improved knowledge and confidence of social care staff.  

The service has also been responsible for, or significantly contributed to, more than 20 avoided hospital, nursing and care home admissions as well as earlier discharge from hospitals.

The report recommends an urgent need for better education around dementia and end of life care - for professionals, housing providers and care providers - along with early discussions around advance care planning both with the person with dementia and their family/carers, before the capacity to make decisions is lost.

Download a copy of the evaluation.

For further information, please contact Wendy Gornicki, PR & Information Officer, Housing 21 on 0370 192 4338 or email