My Father

A beloved father stood as a heroic pillar of resilience, enduring years of unrecognised drug harms and suspected vascular dementia misdiagnoses that would have broken most people. His experience transformed silent suffering into a lifelong fight for safer prescribing and strengthening guidelines for vascular dementia diagnosis ensuring:

•  reversible causes of cognitive changes are always examined
• patients are not interviewed during infection induced delirium and confusion
• follow on assessments are carried out if cognition improves
• larger cohort of family members are interviewed regarding the patient's presentations
• GPs should refer the patient for assessment

In the mid‑2000s, after a long history of sleep issues connected with restless legs syndrome, dad was prescribed a dopamine agonist. No meaningful warnings or monitoring for impulse‑control side effects were provided, despite existing vulnerabilities.

Over a short space of time, profound changes appeared: rapid weight gain, intense sugar cravings, disturbed sleep and mood, and a marked shift towards repetitive, compulsive behaviours around food, finances and other addictions. These concerns were raised with clinicians, but were attributed to other medications or existing diagnoses, with no clear exploration of dopamine‑related compulsions.

As treatment continued and doses changed, his previously cautious approach to money shifted towards increasingly risky financial decisions that ultimately caused serious losses and distress for the family. His weight and blood sugar continued to worsen in parallel with binge‑eating patterns, and serious physical health conditions developed and progressed without any clear recognition of possible medication links. 

Throughout this period, the focus remained on managing crises rather than questioning whether his behavioural and metabolic changes might be driven or amplified by the drugs themselves.

In later years, deteriorating kidney function and physical frailty led to multiple infections, long hospital stays and repeated episodes of delirium during serious illness. At times, these acute confusional episodes were framed as chronic dementia, despite formal assessments at other points describing him as lucid, able to understand information and make his own decisions about care, property and daily life.

Even as his body weakened, he continued to organise his affairs, communicate clearly with family, and demonstrate preserved planning, reasoning and values. He left messages and letters setting out his wishes and reflections, underlining how much of his thinking and personality remained intact.

He also experienced periods of hypersexuality, compulsive buying and other distressing changes that placed huge strain on relationships and family life. These were never adequately joined up with his dopamine agonist exposure, nor systematically reviewed as potential adverse effects.
Despite repeated difficulties with hospital discharge, delays in care, and the cumulative toll of chronic illness, he remained determined, perceptive and engaged. He ultimately died from complications of severe physical illness and frailty. Yet his story shows how a different approach—earlier recognition of side effects, better monitoring and more cautious prescribing—might have spared many years of preventable harm.

His vigilance and courage now fuel an ongoing campaign so that others are warned, monitored and believed when medication begins to change who they are.