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021 Advance care planning - development of a group intervention for people with newly diagnosed dementia and their families
  1. Emily Madsen,
  2. Lorna Grey and
  3. Gillian Horne
  1. Rowcroft Hospice, Torquay, England

Abstract

Background Rowcroft Hospice’s strategic aim is ‘taking care further’. This includes providing greater access to services and end of life care for people with non-cancer diagnoses. Working with Devon Partnership NHS Trust an intervention was developed to offer people post diagnosis with dementia, and their families/carers in South Devon. The ‘Planning Ahead’ session is delivered as part of a ‘Memory Matters’ course.

Aim

  • 4 weekly 2 hour sessions for those recently diagnosed with dementia and carers.

  • Informal introduction to advance care planning - focus on changing ability to communicate and make decisions in the future.

  • Provision of information about the legal framework and support tools.

  • Promote choice – place of care, preferences, hopes and wishes, nature of medical intervention etc.

  • Provide a supportive and safe group to explore these issues.

Approach An informal psycho-education group. The use of group discussion enables individuals to talk about personal experiences/concerns. This facilitates the sharing of information and literature specific to planning ahead. We used mixed media including: video clips, hand-outs, power point, local and national booklets.

Outcomes Initial evaluation by participants:

  • Improved understanding about decision making in the event of changes in communication/capacity.

  • These conversations are difficult to have/or start in families without support.

  • Peer support/normalising effect of the group has been helpful.

Observations of facilitator:

  • Shared opportunity to start difficult conversations.

  • Carers empowered to consider their own preferences and wishes – the universal relevance of planning ahead for all.

  • Individuals with dementia who attend need support to participate and encouragement to be involved.

  • Carers/family members can dominate.

Application Advance Care Planning is a cornerstone of Specialist Palliative Care. Developing bespoke ways to meet the varying needs of different patient groups and their families is essential.

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