Living with Alzheimer’s: How patients, families in UAE cope

Dubai: Vijayalakshmi Srinivasan, 81, wears her sweetest smile. She greets you with a friendly disposition and is very affable. She connects with strangers immediately and is quick to pick up on the mood of all those around her.

Srinivasan has Alzheimer’s disease - the most common type of dementia. It is a progressive disease which initially begins with memory loss leading to loss of ability to carry on a conversation and respond to the environment.

Shoba Dakshinamurthy 54, Srinivasan’s daughter is by her side. She is extremely patient and kind to her mother. She patiently listens to her mother’s constant interruptions when she is in conversation with other people.

“My mother was a working woman and led a very independent life. My father had Parkinson’s disease and passed away in 2014. My mother took care of him. During COVID-19, she came to live with me and my family in Dubai. That is when I started noticing things about her. She would confuse people’s names. At first we thought it was common in old age. Then I started noticing she would forget where the bathroom and kitchen was in the house. An initial diagnosis confirmed she had Alzheimer’s. She later travelled to the US where my brother also had her checked. There too, her diagnosis was confirmed. She always asks me to take her to her hometown Thrisur where her family home is. But somewhere deep down, she wants to come back home to Dubai to be with me,” said Dakshinamurthy.

Dr Mohamed Ismail, Specialist Neurologist, Prime Hospital, said: “Alzheimer’s disease is a progressive neurological disorder that affects the brain, primarily causing problems with memory, thinking, and beaviour. It is the most common cause of dementia, accounting for around 60-80 per cent of cases. The disease typically starts slowly and worsens over time, leading to difficulties in daily functioning and ultimately requiring full-time care.”

Surviving with vascular dementia

Italian expat Michela Rescia, 48, said her father, Mario, suffers from vascular dementia. “We realised something was wrong just after he turned 80. He would forget a lot of things. But mainly, he would go out for hours and not return home. It was getting scary as we did not know where he was and what might have happened to him. We realised that we had to seek medical help. Initially, it was very hard to diagnose as he was fully functional. It took a couple of years before we had him checked and it was confirmed he had vascular dementia. At the same time his memory and general cognitive functions began to worsen.”

Making adjustments as a family .Rescia said the family took the decision to get her father to live with them in Dubai. “We took away his driving licence. In Dubai we are blessed to have a driver. My father used to play golf every day. Now his movement has started to fail him. As a family we make sure to be there for him and supporting him all the way. It took a while to accept it as a daughter. But 4 GET ME NOT ha been so helpful in finding social events for him to go. 4 get me not became like a second family.”

Her daughter Giulia Iorini, 15 said as a grand-daughter she is making the best of the time with her grand-father. “For me I am so happy that he is living with us. Before when he was in Italy he lived away from us. Now that we got him back here, I am so happy to have him around here. We also do social activities together. For example a recent painting event we went for turned out to be so nice. We both are not great artists. But my grandfather was so proud of his work. It was such a great time bonding with him.

Awareness is essential

Filipino expat Desiree Vlekken founded 4get-me-not Alzheimer’s – an NGO in the UAE to raise awareness on Alzheimer’s disease and promote quality of life for seniors. 4get-me-not is the only group to represent the UAE internationally as it is part of the Alzheimer’s Disease International (ADI) based in the UK.

ADI is the international federation of Alzheimer and dementia associations around the world; in official relations with the World Health Organization

Thanks to her initiative, the likes of Vijaylakshmi and Mario have found a platform to meet others senior citizens like them. They have found a platform to undertake social activities as a group. Their families have found support with each other.

Vlekken said she started the NGO in 2013 after her father Fransciso Ocampo was diagnosed with Alzheimer’s. “He died in 2021 from multiple organ failure and complications arising from Alzheimer’s. My mother, Elsie died three months after my father.”

There are more 100-plus Alzheimer’s patients in the UAE that are part of Vlekkan’s initiative. “We host several educational events, memory cafés with memory games and activities, meaningful engagements/activities and more.”

Indian expat Sabria De Souza,24, for one is a volunteer at 4get-me-not. “Alzheimer’s and dementia patients particularly respond to music. My father is a volunteer there and he plays music for the seniors at our various events. I decided to join in too and do my bit to give back to the society.” Lebanese expat Samir Ammoun 51, is another volunteer. “I met a lady once who was lonely and needed a friend to talk to. I came across 4get-me-not. It has been a great experience meeting senior citizens searching for friends and socialising.”

Mona Al-Assaad, 60, a Lebanese, said Ammoun introduced her to 4get-me-not. “My mother Ghada developed Alzheimer’s in 2014. She started denying that she was forgetting things. We noticed behavioral changes and we would find hand written notes to remind her about where the keys are or the cash was kept. So we took her to a specialist neurologist and it was confirmed she had the progressive disease.”

Her mother passed away in 2013. “I am so happy to see that there is support in UAE for patients and families.”

Science behind Alzheimer’s disease

Dr Mohamed Ismail, Specialist Neurologist, Prime Hospital, said the exact cause of Alzheimer’s disease is not fully understood, but it involves a combination of genetic, environmental, and lifestyle factors. “In Alzheimer’s, abnormal protein deposits called beta-amyloid plaques and tau tangles accumulate in the brain, leading to the death of nerve cells and disruption of neurotransmitters, which are essential for communication between brain cells. These changes contribute to the progressive decline in memory and cognitive function seen in Alzheimer’s patients.

Dr. Ismail said: “While there is no guaranteed way to prevent Alzheimer’s disease, several lifestyle choices may help reduce the risk or delay its onset. These include, regular physical exercise , maintaining a healthy diet, particularly one that is low in saturated fats and rich in fruits, vegetables, and whole grains. Engaging in mentally stimulating activities, such as reading, puzzles, and learning new skills keep the brain active. Staying socially active and maintaining strong social connections is very key. Managing and controlling chronic conditions like diabetes, high blood pressure, and obesity avoiding smoking and excessive alcohol consumption, getting enough quality sleep, maintaining a healthy weight are all equally important.

Skills to develop

“While there is no surefire way to prevent or cure Alzheimer’s disease, there are certain activities and habits that can help maintain cognitive function and overall brain health. Engaging in mentally stimulating activities like reading, puzzles, learning new skills, and socializing can contribute to brain fitness. It is essential for senior citizens to stay physically active, maintain a healthy diet, manage stress, and follow a routine that includes regular sleep patterns. These habits can support cognitive abilities and potentially delay the onset or progression of dementia,” said Dr. Ismail.

The Dos:

1. Be patient, kind, and understanding.

2. Provide reassurance and emotional support.

3. Use simple and clear language, speaking slowly and calmly.

4. Maintain a familiar and structured routine.

5. Encourage engagement in activities they enjoy.

6. Ensure their environment is safe and free from hazards.

7. Keep communication open with healthcare professionals involved in their care.

8. Educate yourself about the disease to better understand their needs.

9. Maintain social connections and encourage visits from friends and family.

10. Seek support from support groups or organisations specialising in Alzheimer’s care.

The Don’ts:

1. Don’t argue or correct the person with Alzheimer’s if they become confused or disoriented.

2. Avoid using complex or abstract language that may confuse them further.

3. Don’t take their behavior personally; it is a symptom of the disease.

4. Avoid overwhelming them with too many choices or tasks at once.

5. Don’t exclude them from social activities or conversations.

6. Avoid criticising or belittling their abilities.

7. Don’t force them to remember or recall information.

8. Avoid unexpected changes to their routine or environment.

9. Don’t assume they are incapable of understanding or feeling emotions.

10. Avoid neglecting self-care as a caregiver; seek respite and support when needed.