When the mind slips away: A family’s journey through dementia

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By Hannah Magoola and Ann Mugunga

On Thursday, 16 October 2025, Justice Mike Chibita launched his book “Leaders grieve last” which focuses on various aspects of grief and how we do, and could, respond to the loss of family, friends and colleagues. It made us reflect on another aspect of grief, ‘mourning’ the loss of those still with us but whose lives have been so changed that the rug of life has been pulled from underneath our feet, and theirs!

One family noticed changes that hinted at age-related health concerns in their mother, and asked her doctor for an assessment. He reassured them that she was in good health – he, in fact, chided them for not letting her embrace aging with strength and dignity. From his perspective, they were limiting her, assuming that her growing older would naturally diminish her vitality and enthusiasm for life.

This wise, commanding and fiercely independent woman was most of her adult life a single parent. A larger-than-life personality who rarely spared the rod in shaping her children into strong, disciplined, responsible human beings, she had, over the years, provided, protected, role modeled and, in her children’s words, become a “black Margaret Thatcher”. So, when she began forgetting names, misplacing items, accusing people of theft, the family was caught off guard. And the initial incidents were far apart, seemingly fitting into ‘normal’ occurrences.

What the family did not know what was that what began as confusion would soon spiral into a crisis.

In another family’s story, the mother, who had to move in with her daughter’s family, soon had vivid, distressing accounts of physical abuse and emotional mistreatment. These accusations, insistent and believable, lingered, casting shadows and straining sibling ties. It wasn’t until these repeated accusations were made about once unsuspecting family members that the truth began to surface. The family realized that the mother’s accounts, while detailed and vivid, were not grounded in reality, leading to a devastating medical diagnosis.

Studies show that Alzheimer’s disease and related dementias are increasingly prevalent in Uganda, particularly among older people aged 70 and above. With life expectancy and non-communicable diseases like diabetes and hypertension rising, the risk factors for dementia are multiplying, yet awareness remains low.

Many families attribute early symptoms to stress, aging or spiritual affliction. By the time a diagnosis is made – if at all – the condition may have progressed, leaving families scrambling to understand what is happening and how to respond.

It is evident that dementia doesn’t arrive with a banner. It creeps in quietly with symptoms like repeating questions or stories, getting lost in familiar places, struggling with basic tasks, and sudden mood changes or paranoia. In another family, a mother constantly accused those around her of stealing money.

The family members, unaware of her condition, argued bitterly. But at times, money was discovered in strange places: under the mattress or the sofa cushions. None considered dementia, and in many cases, this lack of awareness fractures the family. Accusations fly; trust is eroded, critical interventions are compromised and the person at the center becomes increasingly vulnerable.

Memory loss is an insidious and quietly devastating symptom of dementia. On one hand, it fuels confusion and conflict within relationships – especially when the patient shares distorted or fabricated accounts that others take as truth.

On the other hand, it undermines the patient’s credibility, making it difficult for loved ones to trust them (even when they are being truthful). This duality creates a painful paradox: the very symptom that distorts reality also robs the patient of the benefit of doubt - deepening isolation and mistrust.

It is not unusual for dementia patients to insist they haven’t eaten all day or to tearfully claim they’ve been mistreated by those around them. These narratives often reflect a deep sense of vulnerability, with the patient portraying themselves as needing protection from imagined threats or persecutors.

For families and caregivers, this presents a complex challenge: they must provide consistent physical care while also navigating the emotional and psychological landscape shaped by the patient’s altered perception. Balancing compassion with clarity, they must respond to distressing claims without dismissing the patient’s experience – crafting routines that honor dignity while managing the emotional toll such episodes can take on everyone involved.

This is why families should never attempt to navigate dementia alone. The journey is complex – marked by learning, healing and the collective effort to support a loved one through the unpredictable terrain of cognitive decline. It demands not only emotional resilience and mental strength, but also the guidance of skilled medical professionals.

As families seek support, it’s essential to go beyond general practitioners and consult specialists in geriatric medicine, neurology, physiotherapy, orthopedics and home care. Each patient’s experience with dementia is unique, and the condition often presents in ways that defy textbook expectations.

While general care principles offer a foundation, there isn’t a one-size-fits-all approach. Effective dementia care calls for creativity, adaptability, clinical expertise and above all, an abundance of patience and compassion.

Caring for a parent with dementia is not just a medical task – it’s an emotional reckoning. Children must confront the painful truth: the parent they knew is changing. Once strong and able-bodied individuals now need help bathing, eating, or remembering basic details. This shift is jarring. Roles reverse. Decisions about finances, healthcare and legal matters fall to the children.

In Uganda, estate administration often lacks formal structures and families may need to engage legal mechanisms to manage property, bank accounts or guardianship. These processes can be costly, confusing, emotionally draining and, at times, fraught with friction.

Perhaps the most insidious of all the emotions is the sense of loss. There is a form of mourning among families dealing with dementia – not of death, but of transformation. The parent is still alive, yet not the same. Families live in limbo – hoping for recovery, fearing decline, unsure how to plan. When asked why she doesn’t call home frequently, one daughter said: “It’s too painful. She is not the Mum that I know... it’s hard for me to talk to her in this way.”

While dementia is daunting, families are not powerless. They can educate themselves by learning the symptoms, understanding the stages and researching available resources. Acting early by seeking medical advice if you notice changes is crucial – an early diagnosis can slow progression and improve quality of life.

Perhaps the greatest tool lies in working together. By sharing resources and communicating openly, families can more easily navigate this journey. Clarity of purpose and shared accountability means that decisions are easier – including legal considerations (e.g., powers of attorney, estate management, wills). The patient can be involved while they are still lucid. Seeking expert help (e.g., doctors, nurses, home care experts) can guide you – don’t wait for crisis to engage them. Home care may be necessary and hiring a nurse or aide can relieve pressure.

Understand that this may introduce new dynamics and that medical teams also vary – some are empathetic, others are clinical. Clear roles, regular check-ins and shared decision-making can ease tensions. Building respectful relationships with the medical team ensures better care. Advocate for your loved ones – ask questions. Be present.

Working together also means that families should plan financially. Dementia care is expensive. Home care, medication, legal fees, hospital visits or specialist consultations all add up to unforeseen costs that must be managed. While grieving the changes, the family can celebrate small wins and find joy in moments of clarity. Acceptance doesn’t mean giving up – it means adapting with love.

One daughter shares: “I almost fell off my feet when Mum asked me about my fiancé – given her challenges with short term memories, I thought she had forgotten him. I’m overjoyed!”. Another said: “I downloaded some stories for seniors today and read one to Mum – she enjoyed it. I’ll keep reading these stories to her.”

Africa’s population is aging. With increased income and life expectancy, lifestyle diseases are rising. Dementia is no longer rare and we must shift the narrative. It is not a curse or punishment – it’s a medical condition that deserves attention, compassion and planning. If you’re reading this and your parents are aging, don’t wait. Talk. Observe. Learn. Prepare.

Dementia may not touch your family – but if it does, let it find you ready. When the mind slips away, love must step in. Not with panic but with purpose. Not with blame, but with unity. And not with despair, but with dignity.

The authors are caregivers of parents suffering from dementia