Caring for a family member with Alzheimer’s is an act of profound love, often unnoticed, leaving caregivers with an overwhelming burden of responsibility. The role of a caregiver is often an emotionally prolonged rollercoaster, filled with constant challenges that demand the utmost patience and understanding. 

My grandmother's laughter, stories and care were the foundation of my childhood, all of which inspired me to become a doctor. Over time, Alzheimer’s transformed her, and in doing so, it transformed me.

It began with small signs that for many are a typical indication of aging: repetitive questions, losing her memory within conversation and repeating stories. Initially, I brushed it off, but eventually realised they were signs of a deeper issue. She would repeatedly ask, “Samuth, do you love your Dad or me more?”; a light-hearted question that became unsettling. During my time in med school her condition worsened, bringing delusions that tested my emotional resilience and affected my own well-being.

During Easter – a time of celebrating the resurrection of Jesus Christ – she experienced intense hallucinations, claiming that her hands were nailed to the cross and bleeding. These hallucinations felt so real they caused her to cry and express anger. No reasoning could bring her peace. Moments such as these have taught me how Alzheimer’s can distort reality for both the patient and their caregivers as well. It was a painful reminder that love and suffering go hand in hand.

Delusions, such as unfounded accusations of theft, presence of bad energy, or fear of loved ones inflicting harm can strain family dynamics. Furthermore, these behaviours leave caregivers feeling powerless, fatigued and alienated. Studies revealed the overwhelming combination of physical and mental demands leads to significant issues such as sleep deprivation, chronic stress, cardiovascular disease and depression.

It is estimated that caregiving becomes a full time job of 92 hours per month, leaving little time for social interaction and self care. In cultures where dementia is poorly understood alongside aging, the family often feels shame and fears societal judgement. The result of this cultural stigma is that the sacrifice of caregiving is silently made, leaving caregivers with an overwhelming, isolating burden.

In more traditional societies, the duty of caregiving falls disproportionately on women who concurrently face additional pressures of managing the household and motherhood, amongst fulfilling other familial obligations. Nearly 19% of female Alzheimer’s caregivers had to quit work to either become a caregiver fulltime, or because their caregiving duties became too burdensome. This underscores the cultural shift required to foster a better understanding of Alzheimer’s and further support the caregiving community. Community education, increased funding in eldercare facilities and more robust support systems are crucial for caregivers in bridging the gap between cultural expectation and practical caregiving needs. Unfortunately, these resources and funding are often limited, especially in low-income countries, leaving caregivers without the assistance they desperately need and deserve.  

The caregiving crisis is a global issue, with the UK alone having over 944,000 people living with dementia, which is projected to increase to over a million by 2030. The focus has always been on the patients, but the silent heroes deserve equal attention. Advocacy for systemic change is critical. Healthcare providers and policy makers must collaborate to support and recognise caregivers; sharing responsibilities can make a world of difference.

My experience as a caregiver was heart breaking yet transformative, deepening my understanding of resilience and the human capacity to endure. As her laughter and memories faded, I tried to shift the focus from her delusions back to our childhood memories that bought both of us joy – those halcyon days.

Caregivers are the backbone of Alzheimer’s care. Recognising their sacrifices and taking on caregiving as a shared responsibility can help make caregiving a less isolating experience, transforming it into one defined by love, compassion and community.