By Sharon Atieno
Though more than 250,000 people live with dementia in Kenya, a lack of knowledge about the condition is leading to delayed diagnosis and inadequate care, a study finds.
Dementia is the loss of the ability to think, remember and reason to levels that affect daily life and activities. Types of dementia include Alzheimer’s disease (the seventh leading cause of death per the World Health Organization(WHO), vascular dementia and frontotemporal dementia, among others.
The Ethnographic study on Attitudes and Perceptions of Dementia in Kenya by the Aga Khan University’s Brain and Mind Institute, explored attitudes and perceptions of dementia among different individuals (patients, caregivers and healthcare providers) at Aga Khan University Hospital in Nairobi as well as assessed community understanding of dementia in Nairobi’s informal settlements.
“Many patients viewed symptoms such as forgetfulness as a normal part of ageing, delaying care-seeking behaviour,” said Dr. Edna Bosire, Assistant professor and medical anthropologist, Brain and Mind Institute, Aga Khan University during the presentation of the findings.
Besides, stigma and lack of knowledge led to delays in seeking care, with some caregivers isolating patients to avoid community judgment.
According to the study, diagnosis took an average of about three years before seeking care due to the disease being misunderstood and linked to ageing or cultural beliefs such as curses or witchcraft.
Additionally, the study found that primary healthcare facilities are the first point of care for most people suffering from dementia. However, due to the lack of knowledge, skills and expertise in dementia, they are sources of misdiagnosis as patients are often treated for depression, hallucination, malaria, arthritis and other diseases and conditions.
“Before the patient can see a specialist like a neurologist, they have gone through misdiagnosis and treatment for other conditions that actually they don’t have,” Dr. Bosire, who is also the study’s Principal Investigator, said.
The study found that dementia takes a deep personal toll on the caregivers, many of whom feel isolated, exhausted and overwhelmed. Additionally, caregiving responsibilities largely fall on women, with little to no training, financial aid, or institutional support. Many caregivers are forced to leave their jobs, leading to financial strain, while the physical and emotional demands of caregiving contribute to burnout, stress and social isolation.
“Caregivers sacrifice their time, health and livelihoods to care for loved ones with dementia and our research shows that they feel isolated and overwhelmed, lacking even the most basic information about how to support a person living with dementia. Many do not know where to go for help, and those who do often find that healthcare facilities are not equipped to provide specialized dementia care,” Dr. Bosire noted.
From the healthcare providers, the study found that numerous challenges exist including shortage of trained professionals such ass neurologists and neuropsychologists, lack of national dementia care protocols to guide diagnosis, treatment and access to care, limited diagnostic tools, and absence of formal support systems for dementia patients and caregivers among others.
The study also found that dementia care is expensive. Most patients lacked health insurance, requiring them to pay out-of-pocket for diagnostics and treatment. Coverage for those insured often ran out due to the high cost of diagnostic procedures. Also, some medical insurance do not have policies that cover degenerative conditions like dementia.
“Providers frequently had to prioritize tests based on patient’s financial capabilities, which could compromise comprehensive diagnosis and care,” the study reads.
Among the report’s recommendations, is the need for an affordable care packages for dementia patients such as including them in the national health insurance and offering subsidized services including for diagnosis; equipping public hospitals with necessary diagnostic tools to improve early screening and detection of dementia, training more healthcare providers in neurology to address the growing demand for brain health expertise, and raising awareness about dementia at the community level to improve dementia friendliness an increase access to services.
Also, there is a need to develop policies that are dementia-related, increase research to understand the prevalence of dementia in Kenya, and train and empower caregivers to manage dementia care effectively.
