Know Dementia, Know Alzheimer’s – A call for support

By Michèle Clavery
President Alzheimer’s Association of
Trinidad and Tobago

September is possibly one of the busiest months in the year for Alzheimer’s Disease International (ADI). It is the month designated to raise awareness around, educate, encourage support of, and demystify dementia.
It is a time when we remember those who have forgotten and those who sometimes are forgotten.
The Alzheimer’s Association of Trinidad and Tobago (AzATT) joins the rest of the world as members of ADI, an international body of associations and organisations, to raise awareness of and educate on a disease that ravages and steals.
This year the campaign continues under last year’s theme, Know Dementia, Know Alzheimer’s, but this year, 2022, there is a special focus on the importance of post-diagnosis support.
AzATT has planned a series of events designed to inform and educate. There will be radio and television interviews, in addition to online webinars. A calendar of events can be found on our social media pages.
The main event of the month takes the form of a Sip and Paint and Movie Evening. This fundraiser launched the month on September 3.
In addition to all that we are doing for World Alzheimer’s Month 2022, I want now to orient you, dear readers, to the business of AzATT.
We are of the opinion that though almost everyone may know someone who has lived, or is living with the disease, only some with lived experiences get involved with AzATT.
Our association is a non-profit organisation, 22 years’ standing. It was started in 1996 as a project, and since then, we have gained international status through membership in the parent body, ADI.
My choice of phrase, ‘22 years’ standing’ over ‘22 years strong’ is deliberate; we are not as strong as we need to be, given the work to be done here in Trinidad and Tobago.
For as much as we organise programmes to inform and provide guidance by way of professional support to those persons and caregivers who reach out to the association, we are limited by way of resources, most especially human resources.
A peculiarity about membership in an organisation such as the Alzheimer’s Association of Trinidad and Tobago is that most people seek membership and join when there is a need; by that I mean when someone finds himself/herself in the role of caregiver, caring for a relative or other person living with Alzheimer’s or some other form of dementia.
However, something else occurs.
Most often, upon the demise of the person who had lived with Alzheimer’s or any other dementia, the need for support is no longer felt by the person who had been caregiver. Membership then ceases, understandably so.
The association, because of reduced membership, would be thrown into a state of flux. In this state, there is a difficulty in executing goals; human resources become limited.
What then happens is that the Board of Directors – nine in total if the full complement is realised – would then shoulder the weight of much of what needs to be done. This would not be so bad if the Board comprised its full complement of directors.
Volunteerism, I believe, is not fully understood. The AzATT Board, by nature of the association’s status, serves gratis. We are a Board of six fulltime workers save for two. This calls for tight time management if only because we are limited.
Two of our Board members are physicians; you can, therefore, understand what it is like, and has been like for them over the past two plus years and continuing. The association would thrive with additional skilled and trained personnel, willing to give of their time and talent, expertise, education, and training, to assist in the many ways we aim to reach and serve the general public.
For example, at present, we are in need of an office assistant. We are now seeking to return to in-person office existence from the virtual platform necessitated by the two-year lockdown.
An urgency as we see it is for research to be carried out on the incidence of Alzheimer’s Disease in Trinidad and Tobago. The data, we believe, would go a long way in informing the government with regard to the necessary steps to be taken with its citizens.
Consequent upon that is another urgent need: governmental support in the designing of a National Dementia Plan. A comprehensive government plan will address the needs of people with dementia, and their caregivers, and it can provide a mechanism to consider a range of issues including promoting public awareness of dementia and improving the quality of health care, social care and long-term care support and services for people living with dementia and their families (ADI).
This September 2022, Keep the AzATT uppermost in your thoughts, just long enough to make that decision to become a member and to assist in raising awareness of, and reducing the stigma attached to Alzheimer’s and other dementias – even if you are not at present caring for someone living with the disease.
We can never be sure where life would take us. I once sat in the position of caregiver, along with my mother and brothers. Her husband, our father, lived with the Alzheimer’s Disease for many years.
There are many families around the globe, and countless others right here in Trinidad and Tobago, who are dealing with the disease.
All are struggling to cope.
We welcome and thank you for your support. Visit www.alztrinbago.org/

Photo by Jeremy Wong on Unsplash