What specific legal issues are related to the autonomy of a person with dementia? 

Henna Nikumaa, PhD in Law, Neuro-ethics and Law Research Group 

In the doctoral conferment ceremony of the University of Eastern Finland in June 2025, 180 doctors and 15 honorary doctors were conferred. One of the doctors to be conferred is traditionally selected as the Primus Doctor. The Primus Doctor has the honour to be the first doctoral graduate upon whom a doctorate is conferred, and they demonstrate the scholarship of the doctoral graduates by answering a question posed by a professor in their field. I had the privilege of serving as the Primus Doctor and this blog post contains the answer I gave at the ceremony.  

Professor Anna Mäki-Petäjä-Leinonen posed the question presented in the title of this blog post, and I responded as follows. 

It is important to emphasize that people with dementia represent a heterogeneous group, encompassing individuals of various ages. Dementia can result from a wide spectrum of diseases that deteriorate the brain’s cognitive functions. Alzheimer’s disease is the most common of these progressive neurological diseases. Notably, dementia can also occur in relatively young individuals, and it is not a part of normal aging. 

However, despite the diverse and individual nature of dementia, there are specific legal issues related to the autonomy of persons with dementia.  

Autonomy and the right to self-determination is a fundamental and a human right and should be respected, as far as possible, throughout the progression of dementia. A person with dementia has the right to make decisions concerning their own affairs, but also, when necessary, the right to receive protection from potential violations of their rights. The restrictions of fundamental rights should always be considered a last resort to protect an individual’s best interests. Restrictive and coercive measures such as restraint are used in dementia care. However, in Finland there is still no legislation regulating these restrictions for older people living in long-term round-the-clock care service housing (except certain situations of infectious diseases). Therefore, it is vital that social and healthcare professionals possess proper expertise in human and fundamental rights. Challenges in expertise, as well as the lack of adequate legislation, can result in groundless and illegal restrictions of fundamental rights.   

Often assumptions about the autonomy of a person with dementia are made – based solely on the individual’s age or diagnostic code. It is frequently presumed that a diagnosis of dementia nullifies a person’s right to self-determination. This overlooks the fact that neither age nor diagnosis can determine an individual’s capacity to make decisions about their own life. Conversely, insisting too strongly on respecting autonomy may place the person with dementia at risk – even to the extent of neglect or abandonment. This may happen in situations where the person no longer comprehends the meaning and consequences of their decisions.  

It is nevertheless true that, as dementia progresses, it affects and diminishes a person’s autonomy and legal capacity. There are different kinds of legal capacities and each of these capacities must be assessed separately depending on the specific decision-making situation. In addition, even if the legal capacity is impaired, the person’s ability to make decisions in legally less significant matters can still be intact.  

In my doctoral dissertation in the field of empirical legal research I focused on the autonomy and autonomous agency of people with dementia. The empirical data consisted of qualitative interviews of people with dementia and professionals from several fields – mostly from elder care services and guardianship authorities. People with dementia reflected that their experience of autonomy can be both supported and prevented by different factors.  

According to my research, experience of autonomy is supported by legal planning – for example through advance directives and continuing powers of attorney. Legal planning also strengthens the experience of autonomy in case of incapacity in the person’s future.                            The realization of autonomy is also supported by relationality – the significance of relationships in decision-making. Relationality can, however, become problematic when it dominates overriding the person’s healthy or presumed healthy will. 

Relatedly, there is a widespread assumption that the rights of a substitute decision-making for a person with dementia always automatically belong to their next of kin. In my research this incorrect assumption was common among people with dementia themselves and their family members as well as among social and healthcare professionals. However, such a mandate can be transferred generally only through formal authorization.  

The people with dementia I interviewed pondered that their autonomy is also supported by social services which strengthen their participation and inclusion in society. However, equal rights to services are not realized for people with dementia when compared to individuals with other diseases or disabilities. People with dementia are often excluded from services to which other disabled individuals are entitled. Whether or not the cognitive disability caused by dementia is considered a disability is of central importance from the perspective of accessing equal rights. Internationally, the rights of disabled persons are safeguarded by the United Nations Convention on the Rights of Persons with Disabilities, which Finland ratified ten years ago. The convention does not exclude any diagnoses or disabilities. However, unfortunately in Finland, in practice people with dementia are not generally seen under its scope of application.  

As a final remark, I would like to point out that research on people with dementia cannot be done without people with dementia. In non-medical research concerning people with dementia, the research data has traditionally been predominantly shaped from the perspective of others – typically family members, caregivers and healthcare professionals. In legal research, the data often consist of materials from authorities, statistics, rulings of courts and legislative preparations. The slogan of many disability organizations “Nothing about us without us” should be more strongly adopted to guide research on people with dementia.  

As a researcher, I want to encourage and empower people with dementia to participate in research. We, as researchers, have the power and responsibility to convey the value of their voices through our actions to the research community, funders, and the broader public. I also want to emphasize the importance of multidisciplinary research. The autonomy as well as legal capacity of people with dementia are not merely legal issues – they extend beyond legal considerations and transcend and connect multiple academic disciplines. 

To conclude, I would like to share a thought from a person with dementia from my research. The following quotation as a metaphor captures the essence of my research more powerfully than I could ever articulate: 

”D’you know that chair game we used to play as kids? 
There were chairs in a circle and we’d walk around them while music played. 
Then, when the music stopped, you had to rush to sit down. 
The trick was, there was always one chair less than there were us kids. 
If we’re talkin’ about my autonomy that’s kinda what living with dementia feels like.” 

Further reading (in Finnish): 

Nikumaa Henna. 2024. Muistisairaan ihmisen autonominen toimijuus (Autonomous Agency of Person with Dementia). Doctoral dissertation. University of Eastern Finland. 

• available in the university’s open repository, UEF eRepo: https://erepo.uef.fi/items/0aed1587-576d-43c6-815e-c7127b39cc04