Following on from my recent short blog about the book and mini-series, Dopesick, I am writing about having an existential crisis… For many years, and with each new year now, I’ve had an increasing feeling of pessimism about the lack of change from my activism, or the advocacy and activism of so many others, especially people living with dementia. An existential crisis is usually a period of psychological and emotional upheaval in which a person confronts fundamental questions about meaning, identity, freedom, and mortality, often triggered by life-altering events, and experiences existential anxiety, loss of coherence, and uncertainty, which may lead either to prolonged distress or to the reconstruction of meaning and self.

This is not quite my experience as a scholactivist.

Existential crisis in the context of dementia

For people living with dementia, an existential crisis is not an abstract philosophical concern, but a structurally produced and socially reinforced condition arising from diagnosis, and the many negative experiences we face following a diagnosis including stigma, discrimination, othering, benevolence, loss of social status, and exclusion from meaningful roles including paid employment. Unlike an existential crisis triggered by individual life transitions alone, dementia-related existential distress is systemic, cumulative, and like stigma and discrimination, should be preventable. Yet according to ADI in 2024, stigma and discrimination are worse now, than in 2019.

Drawing on existential psychology (for example, Irvin D. Yalom; Viktor Frankl), dementia exposes individuals to all four existential “givens”—death, freedom, isolation, and meaninglessness—but does so without adequate social, structural, or policy supports to enable meaning reconstruction.

Diagnosis as an existential rupture

A dementia diagnosis frequently functions as an existential rupture, rather than a gateway to support. Research consistently shows that diagnosis is associated with (Alzheimer’s Disease International, 2019; Birt et al., 2020):

• Fear, shock, and anticipatory loss
• Identity destabilisation
• Social withdrawal
• Heightened existential anxiety
• Poorer health outcomes

Unlike many other causes of disability, dementia is culturally framed as total loss, incompetence, and social death, producing what Sweeting and Gilhooly described in 1997 as “dementia as a fate worse than death.” Most of the people working in dementia charities also wrongly continue to support this narrative… After all, tragedy and suffering are great for fundraising, which keeps a lot of people without dementia in paid employment. This type of framing of a person with dementia forecloses hope, undermines future orientation, and sharply limits opportunities for positive outcomes.

Meaninglessness and the “existential vacuum” in dementia

Frankl’s concept of the existential vacuum—a state of profound meaninglessness—maps directly onto dementia experiences under current systems. Empirical studies (Clare et al., 2014; Bartlett & O’Connor, 2010) show that people with dementia are:

• Routinely excluded from decision-making
• Rarely offered meaningful or rehabilitative post-diagnostic pathways
• Treated as passive recipients of care rather than active citizens

The result is not simply emotional distress, but a structural erosion of meaning, where individuals are denied opportunities to:

• Contribute
• Belong
• Be recognised as knowers of their own lives
• Be seen as equal to others

This absence of meaning-supportive structures is strongly associated with depression, demoralisation, and reduced quality of life (Schnell, 2009; van Wijngaarden et al., 2018).

Clearly, these normal human responses are not neuropsychiatric symptoms of dementia, further supporting the need to ban BPSD.

Identity disruption and social erasure

Dementia precipitates a forced identity transition, often imposed externally rather than negotiated internally (Bartlett, 2014; Sabat, 2001). People report being:

• Spoken over or about
• Stripped of valued social roles
• Redefined solely by cognitive deficit

Identity theory and empirical dementia research demonstrate that identity continuity is central to wellbeing, yet dementia services overwhelmingly prioritise risk management and biomedical decline over identity preservation (Clare et al., 2014).

This externally imposed identity loss intensifies existential crisis by answering the question “Who am I now?” but with social erasure rather than reconstruction.

Existential isolation amplified by stigma

Yalom identified existential isolation as the unbridgeable gap between self and others. In dementia, this isolation is magnified by stigma and discrimination, not inevitability.

Global evidence (ADI, 2019; Werner et al., 2012) shows that stigma leads to:

• Social withdrawal
• Reduced help-seeking
• Silence and concealment
• Internalised shame

Rather than being supported to articulate existential concerns, people with dementia are frequently protected from, or excluded from, conversations about their own lives, reinforcing isolation and helplessness.

Why positive outcomes remain rare

Despite decades of dementia strategies, positive existential outcomes remain uncommon because most systems (Williams et al., 2022; WHO, 2023):

1. Treat dementia as only a biomedical condition, not an existential or social one
2. Focus on burden, risk, and decline rather than meaning and rights
3. Exclude people with dementia from co-design and leadership
4. Fail to operationalise human rights frameworks in practice

Meta-analyses of psychosocial interventions show modest benefits at best when existential, identity, and rights-based dimensions are ignored (Livingston et al., 2017). In contrast, meaning-centred and relational approaches demonstrate improved wellbeing, agency, and sense of purpose (Clare et al., 2014; van Wijngaarden et al., 2018).

Reframing dementia-related existential crisis

From a Critical Disability Studies perspective, existential crisis in dementia is not inevitable. It is produced by:

• Ableist assumptions about cognition and worth
• Social death narratives
• Policy failures to uphold citizenship and participation

When people with dementia are supported to:

• Retain legal and social personhood
• Exercise voice and agency
• Engage in meaningful contribution…

We see that existential distress is reduced, and positive outcomes become possible (Bartlett & O’Connor, 2010; Shakespeare et al., 2022).

Summary

In dementia, an existential crisis is much less about cognitive decline (if it is about that at all?). It is more about systemic denial of meaning, identity, and belonging, and a failure of systems, policies, researchers, dementia charities and health care providers to implement change.

The persistence of poor outcomes reflects not the condition itself, but the failure of biomedical, stigma-laden and discriminatory, benevolent and paternalistic systems to support existential wellbeing, rights, and continued personhood.

Note: References available on request.