Agency and decision-making with advocacy support : a qualitative study of people with dementia living alone
thesisposted on 2023-05-27, 11:23 authored by Dwan, CA
This thesis explores the power of people with dementia who live alone to participate in decision-making processes with advocacy support. Although the benefits of consumer participation in healthcare decisions include improvements in health outcomes, greater emotional well-being and long-term cost savings, people with dementia who live alone are frequently marginalised in the decision-making process. This is significant given that this group is increasing in number and is over represented in statistics on early admission to institutional care. This study specifically examined how dementia affected the agency of people living alone, and how a dementia advocacy service influenced their participation in decision-making. The study employed multiple methods to collect qualitative data from nine people with dementia living alone who have used advocacy services, four dementia advocates and twenty-one healthcare professionals involved in meeting care assessment needs and in referring clients to the advocacy service. A critical realist theoretical framework and a process of retroduction were used to develop an explanatory theory. This study found that dementia significantly constrained agency and led to a narrowing of the social world of participants with dementia. Orientations of agency towards the present and future improved power of agency as did a person's belief in their ability to take action, and advocacy was shown to positively influence these factors. Participation in decision-making was found to be extremely important to participants with dementia but sociocultural factors restricted their participation. Lack of understanding of the variation in decision-making capacity associated with dementia and a strong cultural focus on risk avoidance resulted in low prioritisation of decision-making involvement by healthcare professionals. In contrast, advocacy facilitated participation through trusting relationships, spending time to understand the person's wishes and promoting the rights of the person with dementia living alone. These findings suggest the need for healthcare services to focus on enhancing agency, to encourage supportive decision-making, and to balance safety and emotional consequences of decisions when working with people with dementia living alone. Further, although advocacy provided benefits in protecting and facilitating participation, future success is contingent upon the establishment of a common understanding of advocacy and the advocate role and a universal approach to capacity and risk assessments.
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