Advanced decision making and people living with dementia - planning for our future

Exploring the nature of future planning for people with dementia and their families

The NICE Quality Standard (2010)suggest that people with dementia and their families should have the opportunity to discuss advanced decision making at an appropriate time in the care trajectory. Advanced care planning is viewed as important in that it helps people with dementia and their families to plan for their future care and assists in making important decisions, such as the potential for medical interventions, financial and care preferences. Whilst it is important for such practices to exist, it is unclear what people with dementia and their families think about how these very difficult conversations should be undertaken and at what point in the person’s condition they should take place and what challenges staff face in facilitating such discussions.

The project has two broad aims:

1.      To inform Sheffield health & Social Care NHS Foundation Trust in a development project on the practice of advanced care planning;

2.      To inform the wider development of an intervention to be used with NHS staff, to be evaluated in future proposal to NIHR or other portfolio source.

Over the next six months we will be undertaking a range of activities which include: focus groups with people with dementia, their family caregivers and staff who work in services; comprehensive literature reviews; an audit of current practice; partnership developments.

We aim to explore the nature of advanced decision making with small groups of people with dementia and family carers. In particular we would like to know:

  • What participants think about discussing plans  for the future;
  • What they see as the challenges;
  • How might they be best supported by staff to discuss these difficult issues;
  • When is the most appropriate time to carry out such discussions;
  • When might it be best to avoid these discussions