Living with Dementia: Heartfelt Family Narratives
Caring for loved ones living with dementia is a unique journey. No two journeys are the same although there are several similarities. When I was navigating my journey, I found talking to those in a similar predicament to mine helped me; it gave me comfort, and a feeling that I wasn’t alone. I realised that it was important to share these stories and called on friends and family to talk to me about their experiences.
In this section I recount stories from friends and family who were, and still are, caring for a loved one with dementia. All the stories are real, authentic and narrated in the first person to reflect their voices. I interviewed them either in person or online, wrote up their narratives and asked them to review them before publishing. I also asked them to provide me with a name so that their stories could be anonymised and their privacy protected. In time I hope to extend the boundary and speak to others who are interested in sharing their experiences and thereby build a community.
What each story demonstrates, is the courage, fear, love and at times, helplessness the carers experienced and the devastation that this disease brings both to the person living with it and their families. Some of the carers are based in the UK, and others elsewhere in the world enabling a comparison of access to help in each environment. It also reveals the importance of spreading awareness of this disease.
If you know of anybody who is keen to share their story, please send me an email on info@dementiasphere.com or send a message via the contact page so that I can set up a mutually convenient time for an interview, and if you found this website useful, please share it with others.
Inspiring Triumph: How Syeda's Dad Thrived with Dementia
In this inaugural story I speak to Syeda, a close friend of mine who supported me through my journey with my mother. Her father’s story is interesting as it’s evidence that people can ‘live well’ with dementia.
Syeda’s father was a young man when he emigrated from Bangladesh to the UK in the 1960s. A father of eight, he built a life focused on his family and the wider community and was well respected for his honesty, integrity and generosity. He was hardworking and very active but whilst on a holiday in 2011, the family noticed that he started to exhibit dementia symptoms. He was very disoriented, confused and suffered from memory loss. The family spoke to the GP who initially said that it was ‘age-related’ but sheer persistence on their part led to a referral to the Memory Clinic and a diagnosis of early-stage vascular dementia in 2012. He found the diagnosis emotionally challenging as he didn’t want to lose his independence. The diagnosis did not prevent him from going out and visiting friends and family independently on public transport nor did it prevent him from continuing with household chores and shopping. He fortunately, had the support of the family who remained compassionate and caring to the end.
From Struggle to Strength: Syeda's Mum's Journey in Overcoming Dementia's Challenges
It was after Syeda’s father’s passing in 2018, that her mother started to exhibit dementia symptoms. Initially misinterpreted as grief, she experienced memory loss, suffered from anxiety and confusion and was emotionally volatile. Following a misdiagnosis by the GP her symptoms got worse. Syeda and her family persisted until she was referred to the Memory Clinic and in 2025 diagnosed with mid stage Alzheimer’s and Vascular Dementia. She remains independent and can look after herself, however, she is never left alone. External support is provided by a sitter who visits her twice a week for companionship. They prepare food and cook together which makes her happy. However, she is still in denial about the impact of the disease and the cultural stigma of the diagnosis. The family are unprepared for what the future will hold but in the meantime are committed helping her with pursuing activities that preserve her dignity and bring her happiness.
Lessons in Love: Farida's Journey with her Mum's Dementia
Farida’s mum had a strict childhood and understood responsibility from early on, being the eldest daughter of ten children. After marrying she left for the UK in 1969 but later moved to the USA to be with her four children. She was very creative and loved to pursue handicraft hobbies, like knitting and sewing as well as cooking and reading. These hobbies remained with her until memory loss from dementia affected her ability to continue with them. She was diagnosed in 2021 with vascular dementia, and her decline was rapid following a stroke in 2022. Her daughter Farida became her primary carer, supported by Ali, her brother and Diane, an experienced carer who became part of the family and a companion to their mum. They adapted to the increasing challenges brought upon by the disease despite being unprepared for its rapid progression. They focused on how they could make their mother more comfortable and live her remaining days with dignity and love. For them it was about honouring their mother and remembering how she had looked after them when they were growing up.
Empathy in the Face of Dementia: Ali's Story
Ali’s mother grew up in large family in Bangladesh, the eldest of nine children. She married early and then moved to the UK in the 1960s. A mother of four, she had a keen interest in reading, but it was cooking and preparing meals that she excelled in. She moved to the USA with Ali in 2008 where her life revolved around Ali and later his sister Farida when she moved there. Feeding them when they returned from work was her priority. However, they noticed as time went by, they noticed some behavioural changes; she would cook odd combinations of food and exhibited bouts of confusion and extreme fatigue. In 2022 she suffered a major stroke resulting in a confirmed diagnosis that she had dementia. Gradually, she experienced greater short term memory loss, the inability to move about freely and therefore loss of her independence. Care support was primarily provided by Ali and his sister, with the help of a qualified carer Diane who had experience of caring for dementia patients. The three of them took care of her till her last breath in 2024 providing her with comfort, patience, love and compassion
Navigating Dementia: Insights from Eman's Mother's Story
Eman’s mother married and moved to the UK in early 1970s with her family. only to be widowed 15 years later. She was independent, active and sociable especially as she had the responsibility of looking after five children alone. However, in 2018 she started experiencing cognitive decline. Now in her 80’s, the family initially thought her tiredness was part of the aging process, but further deterioration led to short term memory loss, bouts of confusion and being irritable. What was more worrying was that she started to give away large sums of money. It was also at this point that her physical health declined further with arthritis, a fractured kneecap along with episodes of pneumonia with the latter requiring long stays in hospital. In 2019 she was diagnosed with early-stage dementia. Long periods of hospitalisation resulted in further decline, the loss of mobility and independence, but most distressing was the occurrence of medical negligence. She is keen to return home where she is supported by family. Eman lives overseas but maintains daily contact and is her mother’s emotional lifeline.