My childhood memories of my father, Abraham, who was a barber, are of a strict and reserved man. However, on Sunday mornings, we would embark on leisurely walks in the countryside, where my siblings and I were expected to maintain a certain decorum. As I grew older and moved to London to pursue a career in theatre, I was able to bring my father closer to me by purchasing a flat nearby. It was during my 50s, while working on a production of “Starlight Express” with Andrew Lloyd Webber, that I first noticed subtle changes in my father’s behavior. Initially, he exhibited outbursts of anger interspersed with moments of uncharacteristic gentleness, which left me both puzzled and concerned. As his dementia progressed, his gentle side became more pronounced. However, in his mid-70s, I witnessed a steady decline in his personality. He would frequently call me to report missing items, such as money or keys, leading me to rush over and conduct futile searches. His conviction that someone had broken into his flat and stolen his belongings left me frustrated and disheartened. In retrospect, I realize that arguing with him was counterproductive. I should have instead entered his world, gently assisting him in his search. I also regret not allowing him to sleep in his trousers when he refused to wear pajamas, a small concession that would have brought him comfort. It was only after my father’s passing and my involvement with the Alzheimer’s Society that I gained a deeper understanding of dementia and the importance of compassionate caregiving. They helped me reframe my perspective, and I now look back with regret at the times I failed to meet my father’s needs. The role of a caregiver is demanding and often overwhelming. I cared for my father for 12 years, a period marked by frequent visits to his flat, as he would often appear on my doorstep confused and lost. I would place my phone number in every pocket of his clothing in case he wandered off, but I often received calls from the police informing me of his whereabouts. His daily walks extended for hours, covering vast distances across London, a testament to his physical resilience despite his diminutive stature. I would constantly rush home to check on him, often having to leave rehearsals in central London during my lunch break to deliver his daily meal, a task made more challenging by the fact that he eventually refused to allow Meals on Wheels into his home. As his condition worsened, I reached a point where I could no longer manage his care. We still had no formal diagnosis, and I lacked the knowledge and support to provide adequate care. The decision to place him in a home was excruciatingly difficult, as he vehemently resisted the move. He was initially admitted to a home in London, where I visited him frequently. However, when the building was sold, we were given four weeks to find a new placement, coinciding with his diagnosis of Alzheimer’s. Dementia affects memory and thinking, leading to a gradual loss of abilities. However, individuals with dementia retain some capacities and continue to experience emotional connections to their loved ones and surroundings. It is important for caregivers to adopt a compassionate approach that minimizes the impact of these changes and preserves a sense of normalcy for as long as possible. Fortunately, my sister lived near a nursing home in Leeds, where my father was eventually placed. We all visited him regularly, but I noticed a significant change in his behavior shortly after his move. He had always been an avid reader, but now he refused to listen to me read to him, waving his hands and pushing away the newspaper. It was heartbreaking to witness such a loss of interest in an activity that had brought him so much joy. He became increasingly withdrawn, spending most of his time sitting in a chair, barely eating. It was as if his spirit had been extinguished. He was physically the same man I could embrace, but the essence of my father was gone. I often think of dementia as a train traveling through a tunnel, gradually leaving memories behind until nothing remains, just a beating heart in a once-familiar body. Nothing can truly prepare you for the death of a parent. My father was 89 when he passed away, and while I know it was a blessing to end his suffering, I am haunted by the moments I could have been more present and supportive. I feel an overwhelming desire to share my experiences and offer guidance to others facing similar challenges with dementia. It is a difficult journey, and I wish I had known more at the time. Now, through my work with the Alzheimer’s Society, I provide support and advice to many, including young people who are often unprepared to navigate the complexities of caring for a loved one with dementia. It is encouraging to see how awareness of dementia has grown in recent years, shifting it from a taboo topic to one that is openly discussed. Statistics show that 900,000 people in the UK are currently living with dementia, and the number of diagnoses is rising. There is hope on the horizon, with ongoing efforts to develop effective treatments. However, early diagnosis remains crucial to ensure timely intervention and support. In addition to medical care, activities such as exercise and music have been shown to have beneficial effects for people with dementia. By filling their minds and bodies with these positive experiences, we can help them maintain a sense of well-being. It is also important to encourage interaction with young children, who often bring joy and a sense of purpose to those living with dementia. As their cognitive abilities decline, their emotional connections remain strong, and they appreciate the genuine and unassuming presence of children. As told to Rachel Corcoran One in three people born today will develop dementia in their lifetime. If you are concerned about possible signs of dementia in yourself or someone close to you, check your symptoms today using Alzheimer’s Society’s symptom checklist. It contains 20 questions about possible symptoms or behaviors relating to dementia. If you do not wish to answer a question, just move on to the next one. This is not a diagnosis but may help you discuss your concerns with a GP. For more information, visit alzheimers.org.uk or call Alzheimer’s Society’s Dementia Support Line on 0333 150 3456.
My Father’s Journey with Dementia: A Personal Account of Love, Loss, and Caregiving
