Hiraeth, Institutionalisation, and the Pathologisation of Distress |

Following on from my recent blog about hiraeth and dementia, it has been interesting considering the impact of the longing for home and how is impacts people with dementia who are restrained in segragated, institutional settings. My own feelings about this deep – and mostly unacknowledged yearning, is that people with dementia very likely experience it, from the time of diagnosis. This is because our lives change, and the person we once ‘new’, that is, ourselves, is almost constantly changing. Of course, everyone is changing every single day, but dementia brings many changes that others do not experience.

Frankly (is there anyother way 🙂 ), I yearn for my old ways of being and operating in this complicated world, and for the ability to access past and new knowledge that was once so easy to do… I still miss my near photographic memory!

The Welsh concept hiraeth refers to a profound form of longing for home that encompasses grief, displacement, and yearning for a place or way of life that may no longer be accessible. Unlike simple nostalgia, hiraeth conveys an existential sense of separation from the environment, relationships, and identity that once constituted belonging.

Although culturally rooted in Welsh language and history, the concept provides a powerful interpretive lens for understanding the distress experienced by many people living in residential aged care facilities and nursing homes.

For older adults, home is not merely a physical dwelling but a central component of identity, autonomy, and social belonging (Sixsmith, 1986; Rowles & Bernard, 2013). The home environment contains memories, routines, relationships, and sensory cues that reinforce continuity of self across the life course. When individuals are removed from this environment—often abruptly and without meaningful choice—the resulting displacement can generate profound emotional distress. Research on relocation to residential aged care consistently identifies increased depression, anxiety, and loss of well-being following involuntary institutionalisation (Brownie & Nancarrow, 2013). From the perspective of hiraeth, this distress reflects not simply difficulty adjusting to change but a deeper rupture between a person and the place that anchored their identity.

Institutionalisation in nursing homes frequently entails substantial loss of autonomy. Residents often have limited control over daily routines such as when they wake, eat, bathe, or sleep. Personal possessions may be reduced to what can fit within a small room, privacy diminished, and movement within or beyond the facility monitored or restricted. Sociologist Erving Goffman described such environments as “total institutions,” where many aspects of everyday life are regulated by organisational systems rather than individual choice (Goffman, 1961). Within these contexts, individuals experience not only spatial relocation but also social and existential displacement from the communities and life-worlds that previously structured their lives.

For people living with dementia, the emotional dimensions of this displacement may be particularly pronounced. While cognitive impairment can affect memory and orientation, emotional memory and attachment to place frequently remain intact (Kontos, 2012). Individuals may therefore retain powerful feelings of connection to home and familiar environments even when they struggle to articulate these memories explicitly.

Expressions such as repeatedly asking to “go home,” commonly heard within nursing homes, are frequently interpreted as evidence of confusion or cognitive deterioration. However, through the conceptual lens of hiraeth, such expressions can be understood as manifestations of longing for belonging, autonomy, and continuity of self.

Within contemporary dementia care, behaviours associated with distress in institutional environments are typically categorised under the construct of Behavioural and Psychological Symptoms of Dementia (BPSD). This framework classifies actions such as agitation, attempts to leave a facility, or repeated requests to go home as neuropsychiatric symptoms of dementia.

From a Critical Disability Studies perspective, however, such classifications risk obscuring the social and environmental conditions in which these behaviours arise. When individuals who previously lived independently are relocated—often involuntarily—to locked or highly regulated institutional environments, attempts to leave may represent intelligible responses to displacement rather than symptoms of neuropathology.

Attempts by residents to leave nursing homes are commonly described as “wandering,” “elopement,” or “exit-seeking behaviour.” These terms implicitly frame the behaviour as disordered cognition requiring management or confinement.

Yet in many cases such actions can be more plausibly understood as expressions of longing for home. Through the lens of hiraeth, attempts to leave the institution represent efforts to reconnect with a place and life-world associated with identity, safety, and belonging. Critical Disability Studies scholars have long argued that disability-related distress frequently arises from disabling environments rather than from impairment itself (Goodley, 2017; Shakespeare, 2014). Institutional settings that restrict autonomy, remove individuals from their communities, and impose rigid routines would predictably generate distress in any person. Labelling attempts to leave such environments as “wandering” therefore depoliticises the behaviour, reframing a rational response to confinement as a medical symptom.

This dynamic is reinforced by processes of benevolent othering, in which people with dementia are constructed as vulnerable individuals requiring protection and management rather than as rights-holders capable of expressing meaningful preferences (Grey, 2016; Swaffer, 2016). Within this paternalistic framework, behaviours interpreted as risky—such as attempting to leave a facility—are treated as justification for increased control through surveillance technologies, locked doors, or pharmacological restraint. Although framed as measures to ensure safety, such practices can reinforce segregation and limit autonomy, effectively silencing expressions of longing or dissent.

Examining this issue through international human rights law highlights its structural dimensions. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) recognises the equal right of persons with disabilities to live independently and be included in the community (Article 19), with access to the supports necessary to exercise this choice (United Nations, 2006). Institutionalisation, particularly when driven by the absence of community-based supports rather than genuine preference, has been widely criticised as incompatible with this right (Committee on the Rights of Persons with Disabilities, 2017). When individuals are placed in nursing homes where their movement is restricted and their connection to community life is severed, attempts to leave may represent responses to this structural exclusion. In this context, behaviours described as wandering can be interpreted as expressions of agency reflecting a desire to reclaim autonomy and community participation.

Understanding distress through the lens of hiraeth therefore exposes how the BPSD framework may inadvertently pathologise responses to institutional segregation. The longing embodied in attempts to “go home” reflects not simply confusion but a deeply human response to displacement and the loss of belonging. Reframing these behaviours shifts attention away from individual pathology and toward the structural conditions that produce distress.

Relevance to the BPSD Critique

Seen in this light, the classification of such behaviours as Behavioural and Psychological Symptoms of Dementia becomes increasingly problematic. If actions such as attempting to leave an institution, expressing distress, or repeatedly asking to go home arise from displacement, loss of autonomy, and environmental restriction, then the behaviours themselves cannot be understood solely as manifestations of neuropathology. Rather, they represent coherent responses to institutional environments that restrict liberty and sever connection to home and community.

It is therefore critical we continue to push for re-examining/removing the harmful BPSD paradigm, and I continue to argue that many behaviours categorised as neuropsychiatric symptoms are more accurately understood as normal human responses to stigma, institutionalisation, and the social consequences of a dementia diagnosis, raising important questions about the continued reliance on biomedical explanations that obscure the mulitple structural origins of distress.