A study to Explore the Experiences of Advance Care Planning Amongst Family Caregivers of People with Advanced Dementia.

  • Susan Ashton

Student thesis: Doctoral Thesis


A study to explore the experiences of Advance Care Planning amongst family caregivers of people with advanced dementia. Aim The purpose of this study was to gain an understanding of Advance Care Planning (ACP) process and experiences from the perspectives of family caregivers as proxy decision makers for a relative with advanced dementia at the end of life. Methods The study involved family caregiver experiences of Advance Care Planning within a specialist dementia unit. A qualitative approach using single cases (close family relatives) was chosen for the study. Data were recorded using semi structured interviews from a self selecting onvenience sample of twelve family relatives of residents with advanced dementia in a long term care setting. All respondents had been involved in proxy decision making relating to the care and treatment of their relative with advanced dementia. Data were analysed using content analysis. Results The family caregiver experiences of Advance Care Planning were numerous and complex. Study participants described Advance Care Planning as a distressing but necessary activity. Study participants were able to give a good explanation of what was discussed during the completion of the Advance Care Plan. This included management of pain, medical interventions and treatments and also nutrition and hydration needs. A composite case was developed and highlighted several factors that can impact upon the success or failure of Advance Care Planning discussions with family caregivers. This included: adequate education around Advance Care Planning and more information on dementia for families. Conclusions Advance Care Planning is a relevant and useful activity to undertake with family caregivers. The value of using Advance Care Planning for the family caregiver allowed the best care for their relative to ensure a dignified death within the care home setting was paramount. However the ethical burden 'to do the right thing' can contribute to the already distressed family caregivers and should therefore be supported by experienced and educated health professionals.
Date of Award1 May 2013
Original languageEnglish
Awarding Institution
  • Edge Hill University


  • Dementia

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