Exploring the initiation and revision of Advance Care Planning with and for people with dementia in Scotland: a multimethod qualitative study

Abstract

Dementia is a neurodegenerative condition that progressively affects a person’s memories and capacity to express their future needs. This can lead to an increasing burden of care, decreasing quality of life and dignity of care of people with dementia (PwD) due to the mismatch of the care they receive and the care they expect. One mechanism to mitigate these for PwD is through the process of Advance Care Planning (ACP) which is challenging to initiate and to revise given their fluctuating mental capacity and symptom of forgetfulness. A narrative review was conducted and identified the lack of: i) PwD’s input regarding their ACP, ii) input from PwD living in the community setting and iii) clear timing for the initiation and revision of ACPs. This doctoral study aimed to improve understanding of the initiation and revision of ACP with and for PwD by ensuring that their future plans can be put into practice at the appropriate time with the appropriate people.

A multimethod qualitative study was conducted: i) online and telephone narrative interviews were conducted with 13 PwD, 23 family carers and 4 dyads of PwD and family carers and analysed using a narrative approach and ii) two Scottish dementia policy documents were analysed using Fairclough’s Critical Discourse Analysis.

Findings reveal that PwD relationally co-created their ACP with key persons who had an established, trusting relationship with them. They initiated or revised their ACP prior to the diagnosis and throughout the disease trajectory, emphasising the iterative nature of the ACP. Findings from the ACP policy analysis suggested insufficient support for HCPs for the ACP process, indicating areas of further development.

This thesis generates new knowledge in the field by synthesising understandings of PwD and their family carers regarding the initiation and revision of ACP and how the ACP process is influenced by policymaking.

Date of Award	2023
Original language	English
Awarding Institution	University of Dundee
Supervisor	Judith Sixsmith (Supervisor), Linda McSwiggan (Supervisor) & Deans Buchanan (Supervisor)