In 2000 my mother was diagnosed with Alzheimer’s disease. In our ignorance about the disease we ignored the early signs believing that her loss of memory and change in behaviour had to do with her getting old.
This was the beginning of my journey as an advocate for persons living with Alzheimer’s disease; to raise awareness on the nature of the disease to remove the stigma and ignorance which continue to pervade across our communities.
My mother is a Canadian citizen and the Healthcare system in Canada is one which adequately provides for its citizens and more so for the quality of care of its elderly population. The information and support provided to members of my family prepared us for what was to come with the progression of the disease. I soon learned that close friends had loved one who lived with the disease who had now passed on. I had the opportunity to share about how sad I was feeling, because by the end of 2000 I was a stranger to my mother. They provided support for me. I wanted to learn more. The question for me had always been how many persons in Jamaica had family members who were living with the disease thinking their loved one was going mad, when it was not so. They were simply losing their memory.
In my search to learn more about Alzheimer’s Disease and other dementia related disorder, in 2002 I found the link to Alzheimer’s Disease International (ADI), the international federation of Alzheimer’s Association across the globe. I learned a lot from my communication with staff members. Information and raising awareness were important and the vehicle to get that across communities was through an Association.
The ultimate decision for me was spurred on by a television newscast reporting on the death of an elderly man who went missing for days, and who was eventually found dead miles away from home. In an interview with a family member and caregiver it was revealed that the deceased had symptoms of memory loss and changed behaviour which made it difficult for the family to control him and eventually he wandered off which led to his death.
I understood the anguish of this family on the news because my own family experienced much anxiety when my mother wandered off one day. My mum on her diagnosis was in a Day Care Programme and she was used to a bus picking her up on weekdays in the mornings. In her confusion one morning she dressed and left home before her caregiver arrived and she wandered off. Given we were warned about the possibility of wandering by our mum we took the precaution to have her wear a bracelet with contact information. The Police was alerted. My mum being lost and confused did not find her way home. She wandered around in the neighbourhood and eventually took a seat on the front steps of a home. The neighbour called the Police; who came and took mum safely home. We were thankful.
After seeing that evening news report there was the determination to get an Association started to raise awareness on the nature of Alzheimer’s disease as well as to get policies in place to address serious issues to protect persons living with the disease.
Alzheimer Jamaica was established on August 9, 2006 as a charitable non-profit organization with its objectives being to provide support services to persons living with Alzheimer’s disease, their families and caregivers as well as to raise public awareness on the nature of the disease to prevent stigma ignorance and discrimination.
It was time to debunk the myth that Alzheimer’s Disease is a natural part of ageing. It was time to challenge stigma ignorance and discrimination. It was time for families and caregivers to be made aware of the symptoms and to understand that the changes in behaviour and the memory loss of loved ones was not of their own doing but because of the nature of the disease where there was the progressive dying of the brain cells. It was time for the Government to make dementia care in Jamaica a national priority.