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16 Improving care for people living and dying with dementia through advance care planning
  1. Julie Skelton
  1. Marie Curie Cardiff and The Vale Hospice, Cardiff, UK


The number of people living and dying with dementia is forecast to increase by 270% over the next 20 years. Current practices to encourage advance care planning do not meet the needs of people with a dementia diagnosis as they don’t engage people early enough in the dementia journey.

We undertook a literature review of international evaluated models of ACP for people with dementia, focusing on its impact on care received, and mapped existing provision across a rural health board area. The work was facilitated by interviews with health and social care professionals (n=50), focus groups and interviews with people living with dementia and carers (n=17).

Our findings

  • ACP is an intervention which can reduce unnecessary hospital admissions and healthcare costs, without negatively impacting quality of care and aligns to the principles of prudent healthcare.

  • Recognition that dementia is a terminal illness and early engagement about ACP is fundamental to improving end of life care.

  • Talking about ACP requires time, knowledge and sensitivity. Everyone who interacts with the person with dementia has a role to play in ensuring an ACP discussion takes place.

  • A structured approach is required to prepare, equip and support health and social care professionals to progress the discussion and the equally important documentation and communication of wishes.

Our findingsGood practice is an end-to-end process which is valued and understood by everyone who is part of it. It is reliable and robust; health and social care workers feel informed, supported, protected and empowered to meet the patient’s wishes.

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