‘It’s not reversible’: What Ugandans need to know about dementia

__________________

It starts subtly — a forgotten name, a misplaced item, a story retold twice. But as Prof. Noeline Nakasujja, a psychiatrist at Makerere University Medical School, explains, dementia is far more than the ordinary forgetfulness that comes with age. It is a progressive decline in memory and reasoning that slowly robs people of their independence and identity. “When it sets in,” she says, “it interferes with a person’s ability to function in daily life — and sadly, it’s not reversible.”

Tell-tale signs

Simon Deera, a psychiatric clinical officer at Butabika National Referral Mental Hospital, explains that the human brain operates through about six key functions — including language, attention, and memory. “The way we speak, how we focus on tasks, our ability to recall past experiences and learn new things — all these are part of how the brain works,” he says.

According to Deera, dementia disrupts these functions in different ways, though it primarily manifests as memory loss. “Patients often struggle to coordinate speech, become irritable and disoriented, and sometimes do not even know where they are,” he notes. “They may fail to recognise their own children or relatives, have poor attention, lose appetite, or forget where they have placed objects.”

As the condition worsens, some patients develop psychotic symptoms. “They may start talking to themselves, hearing voices, or fearing that someone is planning to harm them,” Deera adds.

When diagnosing dementia, health workers assess which specific area of the brain is most affected — whether it’s attention, language, or memory.

Who is at risk?

Age remains the biggest risk factor for dementia. “The older you grow, the higher the chances of developing dementia,” explains Prof. Noeline Nakasujja, a psychiatrist at Makerere University Medical School. However, she adds that even people as young as 60 to 65 years can develop the condition.

Doctor viewing a brain scan for possible ageing and disease (Photo by Andrew Brookes / Connect Images via AFP)

Genetics also play a role. “Some genes increase an individual’s susceptibility to dementia,” Prof. Nakasujja notes. Beyond that, several lifestyle and environmental factors contribute to the risk — including poorly managed diabetes, high blood pressure, obesity, and repeated head injuries, such as those suffered by boxers.

“The assumption is that repeated blows to the head can damage blood vessels in the brain, causing brain cells to die gradually,” she explains.

Mental health challenges in later life, particularly depression, can further worsen or accelerate the onset of dementia. Untreated hearing loss and poor eyesight may also make symptoms more pronounced.

Other risk factors include smoking, excessive alcohol consumption, and exposure to air pollution, which allows harmful particles to enter the bloodstream, damage blood vessels, and eventually harm brain cells.

According to Prof. Nakasujja, social isolation is another growing concern. “If you live alone with little social interaction, or had limited access to education in early childhood, your risk of developing dementia in old age is higher,” she says.

Diagnosis and treatment

Diagnosing dementia, experts say, is a detailed process. Simon Deera, a psychiatric clinical officer at Butabika National Referral Mental Hospital, explains that clinicians begin with a thorough evaluation of the patient’s history — often provided by relatives, since many patients are unaware of the changes in their behaviour or memory lapses.

Depending on the symptoms, doctors carry out a range of investigations, including tests for diabetes, hypertension, and cholesterol levels, as well as brain scans to assess any physical changes. Psychological assessments are also done to evaluate the brain’s six major functional domains — including movement, attention, and language — to identify any issues with motor skills, such as difficulty walking or using the hands.

According to Prof. Noeline Nakasujja, certain dementia types can be identified by their specific symptoms. “For instance, people with Parkinson’s dementia often have movement problems affecting their limbs,” she explains. “Those with Alzheimer’s disease mainly struggle with memory, while patients with frontotemporal dementia experience difficulties with communication or language, sometimes developing aphasia or dysphagia — an inability to express themselves even when they can still understand what’s being said.”

Deera adds that a Mini-Mental State Examination (MMSE) — scored out of 30 — is often used to assess a patient’s memory, concentration, language, and ability to write or construct meaningful sentences.

Care and management

While there is no cure for dementia, treatment focuses on slowing the disease’s progression and improving quality of life. According to Prof. Nakasujja, care is approached through three main strategies — psychological, social, and medical management.

Psychological care helps patients come to terms with the illness and cope with its effects. “In the early stages, individuals often feel confused, depressed, or withdrawn,” she explains. “We focus on helping them manage isolation and rebuild social connections.”

The social aspect of care involves supporting both the patient and their caregivers. “It’s important to keep patients engaged — attending church, meeting friends for tea, or playing simple games like golf,” says Prof. Nakasujja. “A consistent daily routine also helps the ageing brain retain and learn new information.”

Because dementia is a degenerative disease that destroys brain cells, Deera notes, there is little that can be done to restore lost functions. However, medications are prescribed to help manage symptoms and enhance comfort, allowing patients to live with dignity for as long as possible.

Tips to stimulate memory

• Engage in crossword puzzles and Suduku
• Social interaction
• regular exercise
• Ensuring a well- balanced diet packed with fruits and vegetables.
• Adequate sleep
• Story-telling to remind themselves of things that happened in the past to bring them to the present.

Support for Caregivers

Caring for someone with dementia can be emotionally and physically draining. Simon Deera, a psychiatric clinical officer at Butabika National Referral Mental Hospital, says it’s crucial to support caregivers so they understand what their loved one is going through — and how best to help.

“This involves educating them about the illness, how to administer treatment, and how to manage other health conditions like hypertension and diabetes,” Deera explains. “They should also know when and where to seek additional help.”

He notes that many caregivers experience burnout, especially those who are not emotionally resilient. “Caring for a dementia patient is a full-time job,” he says. “If possible, families can consider transferring patients to facilities that specialize in rehabilitating older persons. It saves time, money, and helps preserve the caregiver’s emotional well-being.”

For those unable to afford institutional care, hiring an additional helper or nurse can provide relief. Dementia patients often become restless, pacing or staying awake through the night — leaving their caregivers exhausted.

The burden of the disease

Globally, dementia affects an estimated 10 million people every year, a number expected to rise as more people live longer, age being the biggest risk factor.

Although data from Africa remains limited, projections suggest that by 2030, around seven million people on the continent will be living with dementia. In Uganda, small-scale studies indicate that about 20% of adults aged 60 and above may have some form of dementia. Of these, roughly 15% are likely to be cases of Alzheimer’s disease, the most common type.

The need for dementia policies

While Uganda has some policy documents acknowledging dementia, Prof. Noeline Nakasujja says the real challenge lies in implementation at the community level. “We have documents that recognise dementia as a public health issue,” she says, “but the gap is in reaching people in their communities to ensure they receive the care and services they need.”

She points to the United Kingdom’s “Ministry of Loneliness” as an example of how governments can directly support the elderly. The initiative ensures that older persons are visited at least once a week, have help accessing groceries, and someone to call when they fall ill.

“In Uganda, families largely shoulder this responsibility on their own,” she says. “We need community spaces where older adults can gather — to have their blood pressure checked, dance, or simply talk to one another.”

Prof. Nakasujja highlights Brazil’s community centres for the elderly as a model: “They have places where older persons go to dance as a form of physical exercise, but more importantly, it gives them a chance to connect and feel valued.”

Seeking support

No one should have to face dementia alone. The Uganda Alzheimer’s Association provides support to caregivers, helping them understand the condition and manage the people they care for with compassion and confidence.