What does freedom mean to you?
When I think of freedom, I think of having equity of opportunity to thrive in life and achieve what we desire. For me, it’s also about being able to live well and enjoy life, and to be able know and unabashedly be ourselves. This is in contrast to living in a state of fear and survival where we feel “controlled” or “trapped” by our characteristics or circumstances such as where we were born, where we live, our race, religion, gender, sexual orientation, or dis/ability, or by any of our life experiences.  

How does freedom feature in your work?
All of my research is about improving care for people living with dementia who are often denied the right to liberty. This can include being restricted from leaving their homes or placed in residential care settings against their wishes, often due to safety concerns by well-meaning family members. However, restrictions can also be in the form of physical or chemical (medicinal) restraint designed to prevent people from moving. This is more likely to happen to those in the later stages of dementia who may experience behavioural and psychological symptoms including agitation, aggression, and walking about. These types of symptoms can be understood as expressions of distress and unmet needs, but are often perceived and described as “challenging” or “disruptive”, especially in residential care home settings.

What project(s) are you working on during your fellowship at the Forum Basiliense?
There is some evidence that adverse early life experiences, such as abuse, neglect, attachment trauma, and other types of traumas can impact symptoms and experiences of dementia in later life. I believe that by understanding the early life experiences of people living with dementia we can better understand their needs and behaviours and in turn, provide high-quality, personalised care which is less restrictive and upholds people’s human rights, freedoms, dignity, and quality of life. Whilst there has been some work exploring this, very little has been published in the last 10 years. During my time in Basel, I will start to develop this field of research, beginning with a scoping review of what is already known to identify gaps and opportunities for future research.