A diagnosis of dementia marks the start of a long and uncertain journey for the patient and his or her loved ones.
Joseph Opiyo recalls the day, more than 12 years ago, when his father presented with the first symptom of a disease that remains largely misunderstood and undocumented in Kenya.
"I called my father and immediately noticed that something was not right. Our phone conversations were usually filled with joy and would last for hours. On this day, however, I detected a change. Seeing as my mother had passed away, I called the man we had employed to look after the compound. He informed me that my father appeared to be under a lot of stress," he says.
True to the worker's words, Mr Opiyo found out that his father was not himself when he rushed home to check up on him.
"He even asked me who I was. How was I supposed to reintroduce myself to my father? At first, I thought he was just lonely after the death of his wife. I took him to the hospital and he was diagnosed with late-stage two Alzheimer’s disease,” recalls Mr Opiyo.
“I had no idea what that was, and it marked a long journey that ended my work in Nairobi,” he points out.
Being the only son in his family, the responsibility of taking care of his father who was fast losing his wits fell on him. "This was an independent man. He did all his daily activities by himself. Suddenly, he couldn't even understand himself," he says.
The journey, he says, was marred with many challenges as his father's condition deteriorated. Other diseases such as high blood pressure and depression crept in. He eventually lost his 65-year-old father to Alzheimer's disease complications.
Christine Amoyo also experienced the challenges of taking care of an Alzheimer's patient.
When her mother fell ill during the Covid-19 pandemic, Ms Amoyo had no choice but to quit her job and look after her at the hospital where she was admitted.
"I was working as a barrister. I stayed in the hospital for three months when my mother fell sick. I was keen on how the caregivers and nurses looked after patients during that period and even joined them at one point," says Ms Amoyo.
After the experience with her mother, she decided to take the newly acquired skill to the next level.
"I enrolled for caregiving services classes. Months later, I got a job with Golden HomeCare as a caregiver to an Alzheimer's patient. I now have a passion for taking care of the sick."
She, however, acknowledges that taking care of a patient suffering from Alzheimer's disease is tough.
"Caregiving is a calling. You need to understand the kind of patients you are attending to. You need to be patient and have a listening ear. Sometimes you have to put yourself in that patient's shoes," she says.
As Kenya joined other countries in marking World Alzheimer's Day on September 21, low awareness and stigma remain the most significant challenges to Alzheimer's patient care.
Dr Tasneem Yamani, a geriatrician - a physician specialising in caring for the elderly - says that Alzheimer's disease is often mistaken for senile dementia, a disease of old age that is marked by loss of mental faculties.
"Alzheimer's is a progressive disease, which means symptoms worsen over time. As a caregiver, you may feel like you constantly face new challenges. Understanding what to expect with Alzheimer's can help you relate to your loved one's experience and plan," she says.
Some families begin their caregiving journey by learning more from Alzheimer's support organisations that often hold sessions for patients and families affected by dementia.
Elizabeth Mutunga founded the Alzheimer's & Dementia Organisation Kenya (ADOK) after experiencing the challenges over three decades ago.
"In 1992, my dad was retrenched after he became ill. Later, he started showing symptoms of what the doctor diagnosed as dementia. He started acting weirdly. He would wear his Kaunda suit and then pyjamas on top, moved from a mansion to a mabati house before we realised something was wrong," says Mrs Mutunga.
Caring for caregivers
"He would keep asking me whose child I was. In 2007, we went to see a doctor and mentioned the forgetfulness he was experiencing. The doctor said it was dementia, and the sad part was that there was no cure."
By then, she did not know what Alzheimer's was, let alone its symptoms. Before opting for a hospital visit, they thought he was undergoing a mental breakdown.
"I started ADOK in 2007, as a group of caregivers trying to understand what dementia is and how to care for a loved one. In 2017 we changed from an association to a non-government organisation."
ADOK offers counselling and training for those caring for dementia patients.
Mrs Mutunga, however, decries the lack of funding and the low awareness that further worsens the situation for both patients and their caregivers.
As more families feel the financial strain that comes with the care of their loved ones, the demand for home-based care services for Alzheimer's patients has been growing. Several hospitals are incorporating home care services in their packages, but the costs are high.
Ambrose Mwangi, a nurse by profession, identified a gap in dementia care and tapped into it with his Golden HomeCare, an organisation that offers home care services for Alzheimer's patients and the elderly.
"I used to work in the Intensive Care Unit (ICU). Most of the time, I would see patients, especially from up country, get stranded after being discharged. By then, the idea of homecare was still new," says Mr Mwangi.
Golden HomeCare's 54 staff, including nurses, caregivers, and physiotherapists, do home visits, easing the burden for families.
The home care services range from between Sh3,000 to Sh4,000 per day, depending on the patient.
Dr Tasneem Yamani says Alzheimer's disease develops in roughly three stages, including the mild stage where a patient may still be able to perform professional and social activities, but may have difficulty with some tasks involving thinking and memory.
Then it progresses to the moderate stage, which is characterised by significant memory loss, confusion, and physical symptoms.
It becomes harder for the patient to recognise family members, follow instructions, or carry out daily tasks.
In the severe stage, the patient needs help with most tasks. They may experience incontinence, have difficulty chewing or swallowing, and become unaware of their environment.
Alzheimer's disease stages can vary from individual to individual.
As a caregiver, she says, it's crucial to keep your loved one engaged and active with daily activities. This can provide stimulation and help pass the time, even if they can't do certain things due to the disease.
Dr Tasneem stresses the importance of understanding this and taking steps to keep your loved one active.
She recommends activities such as walking, lightweight training, dancing, listening to music, household chores like folding laundry and gardening, going to a park, going to movies, and visiting friends and family.