Alzheimer’s – breaking the cultural taboo

As much as support is a dire need for both patients and their caregivers, much education is needed to raise awareness and break taboos. (Photo:Envato Elements)
AMMAN — Every three seconds someone in the world develops dementia, according to Alzheimer’s Disease International. In the past 20 years, deaths from Alzheimer’s have increased by 145 percent, with the highest increase in Africa and the Middle East. Cases are expected to triple to over 150 million in 2050 as a result of population growth and aging.اضافة اعلان

Whilst the terms dementia and Alzheimer’s are used interchangeably, it should be noted that dementia is a general term for memory loss symptoms rather than the disease itself, and Alzheimer’s, a type of dementia, is the progressive brain disease that impacts nerve cells in parts of the brain involved in thinking, learning and memory, eventually leading to immobilization, difficulty swallowing and fatality.

“We are facing many challenges here in Jordan pertaining to funding for Alzheimer’s, support for patients and their caregivers, as well as educating society about the disease and overcoming stigma around Alzheimer’s,” said Hamza Nouri, founder and president of Al Oun for Alzheimer’s Patient Care Association in Jordan.

Nouri founded the association in 2020, and at 24, he is the youngest person in the world to run an Alzheimer’s association.

“I was inspired by my aunt who was diagnosed with frontotemporal dementia at a very young age,” Nouri added.

As much as support is a dire need for both patients and their caregivers, also education is needed to raise awareness and break taboos.

“Sadly, caregivers or family members are ashamed of either admitting or publicizing that the disease has hit a beloved one due to denial, myths, lack of information, community viewpoint on patients and misconceptions about Alzheimer’s,” said Leen Al-Madanat, secretary of Al Oun for Alzheimer’s Patient Care Association.

An undated photo of the founders and board members of Al Oun for Alzheimer’s Patient Care Association. (Photo: Handout from Al Oun for Alzheimer’s Patient Care Association)

“Myths such as dementia only hits old-aged people and that every elderly will get it are widely spread. Other common ones include smokers get dementia, the disease runs in the family and the patient is unaware of his/her surroundings,” added Madanat.

It should be known that Alzheimer’s is not a normal part of aging, even though the mind may become less sharp over time. Sometimes not being able to remember the name of an acquaintance can be a part of normal aging. Not remembering the name of a family member, however, is a symptom of Alzheimer’s. Communication may be lost at some point, but this patient is still aware and can probably see more deeply into a piece of art, and point out things that others miss.

Whilst many are diagnosed with this disease in the 80s, 5–6 percent are diagnosed before the age of 65. According to the Alzheimer’s Foundation of America, the risk of getting Alzheimer’s disease doubles every five years after 65.

Raising awareness about Alzheimer’s and empathizing with patients is the first step. People need not whisper about the disease nor avoid talking about it in order for support to happen. Shame and blame should be ended to rid the patient of humiliation, distress and dishonor. It is no fault of any caregiver either. It is a disease.

(Photo: Handout from Al Oun for Alzheimer’s Patient Care Association)

The pandemic has its toll on the Alzheimer’s community, negatively impacted the progress, and staggered the support to patients.

“Many doctors and nurses were unable to reach their patients, and mental support was hard to give for both patients and caregivers,” said Nouri. He ultimately aims to set up an Alzheimer’s day care center in Amman, which will be the first. The association also hosts a WhatsApp group called “Loved Ones with Dementia”, which offers mental support, resources and advice to caregivers, who are true heroes.

“If you have had a family member that has been impacted by this disease — or if you yourself are experiencing it — then know that you are not alone and that we are there to support you at different stages of the disease and working hard to educate the community. Stay strong and together we can battle Alzheimer’s and save the patients’ right to live honourably,” said Nouri.

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