Families reach out for support as Alzheimer's cases rise

MICHÈLE SAUNDERS CLAVERY, president of the Alzheimer's Association of TT, says from the increased number of phone calls, e-mails and messages from members of the public, she believes incidents of dementia are increasing in TT.

Alzheimer’s disease is the most common form of dementia and is the ninth leading cause of death in the country, according to the World Health Organization.

“What were are noticing as well is folks in their 40s and 50s are also presenting with the signs and symptoms of Alzheimer’s disease, and some of them have been diagnosed.”

She stressed that being forgetful alone is not a sign of dementia as forgetfulness is a typical age-related change. Some symptoms are asking the same questions over and over, an increasing need to rely on memory aids or family members for things they used to handle on their own, difficulty concentrating, finding it hard to carry out familiar daily tasks and being confused about time and place.

World Alzheimer's Month takes place every September and World Alzheimer's Day is on September 21. The theme of the month is, "Time to Act on Dementia, Time to Act on Alzheimer’s."

Clavery said this month the local Alzheimer's association is joining over 200 member-countries belonging to Alzheimer’s Disease International (ADI) in spreading the word about Alzheimer’s and heightening awareness.

The month of awareness was launched on September 1 with Learn and Lime at Hayes Court, Port of Spain. There will also be a Health and Wellness Fair at Port Mall, Scarborough on September 20; a staging of the BBC award-winning radio play, The Mighty Corbeau, by Julien Neaves and discussions at Nalis from 2 pm on September 21; and a World Alzheimer’s Month Langiappe, a BINGO Fundraiser on November 9.

She said the organisation needs supporters, volunteers and people who will bring their knowledge and skills to the organisation. Not only is it short four directors, but caregivers were suffering in silence without any support as the organisation educates and trains people, while trying to reduce the stigma through programmes, workshops and webinars.

She said she was thankful to ADI for insisting member-countries make a National Dementia Plan as the World Health Organization declared dementia a public health priority.

“I’m happy to say that our Ministry of Health is on board. We have been working on a National Dementia Plan. We started last April and Alzheimer’s stakeholders have been having meetings with the ministry.”

She hoped the plan would be completed by early next year as it would help caregivers and those living with Alzheimer’s in many ways.

For example, certain legal documents could be drawn up for caregivers to ensure someone else could not assume ownership of the patient’s property or access their accounts.

She said she has heard of cases where a neighbour offered to help care for someone with Alzheimer’s and the family members, who lived abroad, later found out the patient’s property and finances were willed to or signed over to said neighbour.

The plan could also include easier or cheaper access to dementia medication, vetted care homes for dementia patients at minimal cost, or stop caregivers from being victimised or punished when they need to take time off work to care for the patient.

She said previously people had Alzheimer’s but their family never knew. They assumed the person was just getting old and forgetful or that they “talking crazy.”

“Now we know, to be forewarned is to be forearmed because you could put certain things in place, for example, with regard to your banking. The person who is caring for you would need to initiate transactions.

“So you can put things in place while you are still in the early stages, when most people know they are forgetting. Don’t hide from it because it progresses and only gets worse as other characteristics present.”

Living with Alzheimer’s

One caregiver, who did not want to be named, said she and her two children were devastated when her 55-year-old husband’s personality started to change and he was eventually diagnosed with dementia in 2021.

She said they were married for 26 years and had made plans for their retirement, talking about writing their wills and other things they never addressed because they thought they had time. Now, even though he is still here, nothing can be done because he cannot write a letter of authorisation.

She said it was challenging doing business on behalf of the person living with Alzheimer’s as, when some financial institutions realise the account holder does not have their full mental capacities, they do not want to allow anyone else to handle their business.

She said if the institutions recognised they have a mental condition, a power of attorney was “of no use.” And applying to be appointed as the committee of a patient’s property under the Mental Health Act could cost over $20,000.

She told Newsday her husband had a supervisory position, could make complex calculations in his head, had excellent organisational skills and loved to play football, watch sports and lime.

She first noticed something was wrong when he started withdrawing from his regular activities, preferring to stay home. At times he got reflective and declared he was a bad father and son, and was not doing all he should.

At that point, they thought he had depression and so was being treated for it in the public health system.

They also got an MRI, which showed changes in the brain. But they were told those changes happened to people who had high blood pressure so it was a normal thing. He told the doctors he was stressed at work so the doctors did not investigate it any further.

But then he started getting confused. And issues with his accounts started appearing but he did not know how to contact the financial institutions and address them. She realised the problem was bigger than they thought.

The psychologist he was seeing referred him to a mental health clinic and he was diagnosed as having dementia – either vascular dementia or Alzheimer’s.

“In my experience, they didn’t really pursue finding out what caused it. They just said he has dementia, which is a degenerative condition and we had to focus now on dealing with it.”

So, she took things into her own hands. They went to a private doctor and a neurologist for follow-up tests to determine the cause of his dementia, the type of dementia he has, and if anything could be done to slow his deterioration. They are awaiting the results.

Looking back, she realised there were earlier signs like him forgetting to return calls and repeatedly making copies of keys. But he was still functioning normally so She did not think anything of it.

Now, he is easily distracted during conversations, cannot remember the names of everyday objects, uses words out of context, gets confused, frustrated and angry, and could not remember his own daughters who were 25 and 18 years old.

“When he was diagnosed I just couldn’t believe that was what my husband had. He was too young for that! I knew something was wrong but it took a long while to accept it was dementia.”

She said she used to cry every day and she still does at times, especially when he looks at her as if he does not know her.

She said in the beginning he would say he felt as if he was in a dark hole that he was trying to climb out of but could not. She said he knows something is wrong so would sometimes hit himself in the head. He sometimes asked, “Why can’t I be normal?” and expressed the desire to get better.

“These things hurt me to hear because he’s in pain. He knows he used to do things differently but he’s not able to. It’s painful to see him like that.”

She said she was thinking of taking early retirement to care for him but they still have a mortgage and other bills to pay and to send their second daughter to university. Also, he was a contract worker so he has no pension to get and he is too young to get a government pension.

“I’m holding on by God’s grace to see how he changes. I don’t feel comfortable, right now, putting him in a home. I visited a few and the people were senior folks sitting and staring at each other. I can’t put him there. I prefer to have him home where he can still go out, take a walk and come back home.”

She and her daughters had each other for support as well as that of their church. She has also been going to therapy and is encouraging her daughters to do so as well. She said she prayed their father’s circumstances did not stop them from experiencing the joys of having a family in the future.

She also hoped public health facilities give people “a fighting chance” by raising more awareness for dementia and making more extensive tests available.