RESEARCH UPDATE: A Reflection on ‘An Account of Personal Autonomy For People Living With Dementia’
Written By Andrew Stumpf
Does a diagnosis of dementia mean a life without autonomy? If personal autonomy is about doing what you really want to do, does this become impossible due to declining cognitive functioning associated with dementia? The loss of personal autonomy is something people living with dementia fear most. Some would rather die than live with dementia. But what if it is still possible for people living with dementia to exercise personal autonomy, so long as the right supports are in place?
The publication of our research paper ‘An account of personal autonomy for persons living with dementia’ in the Gerontologist marks a key milestone in this research project. We started with the intuitive idea that to support personal autonomy well, we need to clearly understand and define what personal autonomy is. In the empirical literature the term “personal autonomy” often goes undefined, or is defined using purportedly synonymous terms like “independence.” In fact, we have another study under review that attempts to show systematically that in most studies of personal autonomy in persons living with dementia, the term is poorly or incompletely defined. Since words like “autonomy” and “independence” are used in a variety of different ways, and since it is a complex and contested concept, it is crucial for researchers to be clear about what they mean. Similarly, those who care for people living with dementia should also have a good grasp of what personal autonomy involves in order to know how to best support their loved one.
Philosophers have written reams about personal autonomy. So, to develop our “concept-map” of personal autonomy, we turned first to this rich theoretical literature. Rather than dwell on debated points, we looked at what these philosophical accounts held in common. We found that according to these theorists, personal autonomy is about a person's ability to do what they truly want to do.
This involves three categories of ability:
(1) Decisional Autonomy: The ability to formulate decisions pertaining to one’s life.
(2) Authenticity: The ability to recognize one’s decisions as genuinely one’s own.
(3) Outward Autonomy: The ability to carry out one’s decisions in the world.
The first two categories involve inner processes including deliberating, evaluating, remembering, interpreting, reflecting and endorsing. The third involves all the skills needed to make things happen in the world around us. None of us have all these abilities in perfect operating condition. We have them to different degrees at different points in time. And our ability to exercise them will depend on our networks of social and relational support. We always depend on others to be able to deliberate well, to understand ourselves, and to make things happen. (Socio-relational support should be understood as a fourth dimension of personal autonomy since it is so central to our ability to do what we truly want to do.)
After developing this account of personal autonomy in the first half of our paper, we tested it against what we know about personal autonomy in people living with dementia based on a scoping review of empirical research. We found that each of the areas identified in our concept-map is relevant for people living with dementia, and that personal autonomy can be realized by people living with dementia, even when the condition becomes moderate or severe, as long as a strong and sensitive social support system is in place for the individual. In the paper, we note a number of specific strategies for supporting decision-making, authenticity and executional autonomy, along with common pitfalls that contribute to undermining the personal autonomy of people living with dementia.
Our next step will be to carry out our own study of personal autonomy in persons living with dementia, through conversational interviews interpreted using a phenomenological approach. This study was approved by a University of Waterloo research ethics board, and is currently underway. We want to understand more deeply the lived experience of personal autonomy in all its dimensions for such individuals, the impact that living with dementia has on one’s personal autonomy, and what tends to support or hinder the exercise of autonomy. This will provide a deeper understanding of this phenomenon from a perspective that combines theoretical insights with reflection on lived experience. Ultimately, our hope is to use a knowledge-base that is both philosophically and empirically informed to develop resources for better supporting individuals living with dementia to exercise their personal autonomy to the fullest extent possible given their circumstances.