End-of-Life Care for People with Dementia

Syllabus

• Week 1

  Maintaining dignity through relationship

  • Introduction

    Whatever our health status, every human being needs to connect with others, at every stage of life, including at the very end of life. This week we explore the concept of maintaining dignity through social relationships.

  • Connecting with others

    A holistic approach to end of life dementia care incorporates all aspects of the individual, including their connections with others. In this section, we focus on meeting social needs and maintaining effective communication.

  • Advance care planning

    Experiencing ‘a good death’ which meets the needs of the person with dementia and their family, requires communication about end of life wishes and preferences at an early stage.

  • Expressing self

    This section focuses on different aspects of self-expression, the environment of care and possible misconceptions about the sense of identity experienced by people living with dementia towards the end of life.

• Week 2

  Maintaining dignity through comfort

  • Introduction

    The approach for all dementia care should follow the WHO definition of Palliative Care (2014) which considers the holistic approach to caring. In this week we will focus on comfort and wellbeing.

  • Wellbeing at the end of life

    Whilst keeping in mind social connectedness and psychological needs, we now focus on how holistic end of life care can be enhanced by good physical care, and the maintenance of comfort and wellbeing.

  • Nutrition and hydration

    Enabling individuals to exercise choice around eating and drinking may involve some difficult ethical decisions around beginning, continuing or stopping fluid intake and nutritional supplementation, as the end of life approaches.

  • Symptom management

    Some people fear dying in pain or with other distressing symptoms. Pain management, the prevention and management of delirium, and other approaches to managing physical symptoms become vital for good end of life care.

• Week 3

  Maintaining dignity through finding meaning

  • Introduction

    This course has been underpinned by the concept of dignity and holistic care. In this final week we consider aspects of spiritual care - such as supporting people's religious beliefs and finding meaning in life, and death.

  • Finding meaning

    Attempts to find meaning in life and death may be expressed through experiences of formal or informal religion, as well as through reminiscence-based discussions, activities and prompts.

  • Specialist support

    In the United Kingdom, specialist support for the families of people living with dementia is often provided by Admiral Nurses. We now look at their role, as well as ways of managing and coming to terms with anticipatory grief.

  • Supporting families through grief

    Support for people living and dying with dementia, as well as for their families and friends, can come from a range of sources, such as informal social networks or more formal religious organisations, traditions and rituals.

  • Summary

    Congratulations on reaching the end of the course. We hope that you have found it helpful, and that it will enhance your work with people living with dementia and their families, at the end of life.

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