Treating dementia, supporting caregivers

Imagine having to watch someone you love forget themselves and the people they love and slowly become someone else.

That is what many families have to deal with as their older loved ones are affected by dementia.

Dr Kristal Dillon, a family physician for the past 12 years and board member of the Alzheimer's Association of Trinidad and Tobago (AzATT) said there are many types of dementia but Alzheimer's disease and vascular dementia are the two most common types in TT.

“Dementia is a disorder of the brain that affects thought, memory and language. So the symptoms will be in keeping with all these areas of the brain that are affected.”

She stressed that dementia presents differently in each person but, in general, the symptoms start with memory loss. As the disease advances, they begin to get difficulties in performing familiar tasks like brushing their teeth or getting dressed.

It may also affect speech as they forget certain words or how to pronounce them, or become disoriented to time, place and people with a few lucid moments. Some may have behavioural issues such as aggression, irritability and insomnia.

And in the late stage of dementia, there is an escalation of the symptoms including them becoming non-verbal or bedridden.

According to a study done by Dementia Awareness and Research of TT in 2015, in TT, 13 per cent of people over age 60 have some type of dementia. That number is expected to increase to 17.7 per cent by 2025. Also, 23.5 per cent of people over 70 years old have dementia, and of that 23.5, 65 per cent have Alzheimer's.

But the problem is not only in TT. Dillon said the global numbers of people with dementia are expected to triple by 2050. She said AzATT is in the process of designing a national dementia plan with the Health Ministry to prepare for that eventually.

“There are also growing incidents of patients in the younger age groups with dementia. And because of that, next year we plan to launch our (AzATT) youth arm to sensitise young people about the disease. And of course, they are the ones who care for their older relatives so we can also equip them with the tools to do so.”

Dillon said when she sees Alzheimer's patients in her practice, they usually present in the mid-stage of the disease.

She first gets a thorough medical history of the patient and then makes a diagnosis, as not everyone who presents with the symptoms have Alzheimer's.

“There is no test that can diagnose Alzheimer's per se but there are screening tools that could rule out anything more sinister or another condition. Once we are certain it’s Alzheimer's disease, most times the treatment will focus on symptom alleviation.”

She also tries to educate the caregivers and take on a supportive role as there is no cure for dementia and the current treatments do not alter the underlying course of the disease but temporarily improves symptoms.

However, on July 6, the American Food and Drug Administration approved a new drug called Lecanemab. It is the first and only drug that significantly slows the rate of progression of Alzheimer's and reduces cognitive and functional decline in people in the early stages of the disease.

It is not yet available in TT.

She said the international theme for this years' World Alzheimer's Month, observed in September, is Never Too Early, Never Too Late and focuses on risk factors and prevention.

She explained there are non-modifiable risk factors such as age, family history and genetics but there are modifiable risk factors that people can control.

Risk factors that contribute to Alzheimer's that can be avoided include a sedentary lifestyle, smoking, high alcohol consumption, infrequent social contact, diabetes, hypertension, depression, air pollution, hearing impairment and head injuries.

Julie Ali is the main caregiver for her mother, Mumy Ramnath, 83, who has vascular dementia. And her father, who passed away almost two years ago, was in the early stage of Alzheimer's.

Vascular dementia is caused by brain damage from impaired blood flow to the brain, causing a decline in memory, reasoning, planning, judgment, and behaviour.

Factors that increase the risk of heart disease and stroke also raise the risk of vascular dementia. These include high blood pressure, diabetes, smoking, elevated cholesterol levels, obesity and an unhealthy diet.

The youngest of six children, Ali believes her mother started showing symptoms of dementia about 20 years ago. It started very small changes so the family thought nothing of it but, over the past ten years, they became more dramatic and the family thought it was Alzheimer's.

“She goes through different phases where her behaviour pattern changes. From my point-of-view, it’s more difficult than dealing with Alzheimer's.

“Now, compared to maybe five years ago, her whole personality is different. She is almost becoming a totally different person. With the dementia there's more things involved like auditory hallucinations where she’s hearing things that are not there.

“When that started, I think, was the key point for us. That’s when we started figuring out what was really happening with her and taking it seriously.”

Ali said her mother kept talking about the things she was hearing. But when Ali said she was not hearing them, Ramnath would get upset and it caused conflict between them. At that time Ali was not aware it was a symptom of dementia.

She said Ramnath can remember things from long ago clearly, but can not recall more recent events without coaxing. Ramnath also has no memory of being hospitalised a month ago for infections and moving in with Ali and her family full-time.

She said Ramnath’s dementia progressed rapidly when her father died, with dramatic behaviour changes including irritation as well as physical and verbal aggression.

“I could do the physical things I have to do throughout the day but the emotional and mental part of it, that’s the hardest part for me to deal with especially because we were close. She’s my mom.

“It really is a very challenging thing. As we speak now, my mom recently went into a very different stage of the dementia. I've done it up to now but I am actually questioning myself as to how well I can handle this part of it.”

Ali believes her mother’s lifestyle and “traumatic” upbringing contributed to the disease, which makes her feel a stronger responsibility to take care of the woman who took care of her when she was younger.

“There are days that are good and I get up and do what I have to do. Then there are some days it hits you and you feel like you don’t want to deal with this and you can’t even move.

“Then there are the odd days I panic, feel overwhelmed and get anxiety attacks. I wonder if I’m really equipped to handle this. I don’t think people understand how drastic the personality changes can be.”

She said when that happens, she stops and makes no decisions as she knows the feelings will pass. She may take a break and leave the house for a few hours while her eldest sister takes over caring for their mother but then she feels guilty.

Ali told Sunday Newsday the emotional turmoil is one reason support systems are important. And some of her support comes from the public health system.

She could not afford private care for her mother so went to the public health centre in St James. There she carries her mother to a clinic and gets advise and counsel from social workers who took an interest in her and made her feel comfortable talking about her situation.

She said the professionals at the clinic are a big help and she feels blessed to have met so many good and positive people during her journey.

Another big support is her husband and daughters, and eldest sister. She said she gets a lot of peace from having a close family unit. She said she tries not to let the situation overpower her household and impact her family in a negative way. And it helps that she is a spiritual person, reads a lot of positive material and can talk to her social worker at any time.

Ali believes there is a need to educate more young people about dementia so when they see the symptoms in family members it is not a shock to them. It will also make them aware of preventative measures they can take for themselves.

She recalled when she started to research dementia, she was able to anticipate certain things and care for her mother better. Now she is more knowledgeable, she believes three out of four families affected by it but people dismiss it as old age, grumpiness or insanity.

Clint Sealy’s mother, who turns 86 on Thursday, has early stage Alzheimer’s and has needed care for about a year.

He said he did not take her to officially get diagnosed but discerned the issue from her symptoms. So far, her only problem is memory loss, although she remembers things from decades ago and still remembers the people in her life.

“But if you’re talking to her now, she will ask the same question or tell you the same thing three or four times as she will forget.”

He said she would start to cook, step away from the stove, forget about it and go take a nap. To limit the danger to her, she now lives with her two sons.

Sealy, who works long hours, used to have a caregiver go to their home to care for his mother. But when the person did not show up, he had stay home and could not work. As a result, he found a recreation centre in Petit Valley which is a day-care for the elderly.

He said she has fun every day with games, activities and field trips as well as socialising with her peers. Her mind is kept active, her hand-eye co-ordination is maintained and, because she usually does not remember the previous day, every day is new and exciting.

He said the recreation centre is much better than having her do nothing but sleep, eat and watch tv all day at home. He recalled the times, after sleeping at home during the day, she would be awake all night “making mischief” and he would have to stay awake to watch her.

Still, he said, mornings and evenings can be stressful and aggravating so a lot of patience is necessary to deal with her.

For example, he said getting ready to leave on mornings can sometimes be a chore. He would set out her clothes and she would dress but, by the time he returns to check on her, she would change back into her home clothes because she refuses to believe she has to go out.

She also tends to hide her things and then cannot remember that she hid them or where she put them. And they are hidden so well nobody can find them. She is also constantly afraid of being alone or that someone would break into the house. At other times, she would forget she just ate and return two minutes later claiming to be hungry.

“Sometimes it’s very depressing seeing my mother like that, especially when she’s in pain and cries. Sometimes she knows she’s forgetting and she knows something is wrong because she will come outside and tell me she’s confused, and I’ll have to calm her down.

“As a family member it is very stressful. From the outside, someone looking in might say, ‘Why you have to be getting on so,’ but they aren’t in it. It’s only when you’re in it you’ll understand that it’s very hard. It’s a special kind of patience you need.

“At first I used to get angry and we used to go at it. And mummy, she’s a fighter. She doh back down. Two of us used to go at each other until I realised it makes no sense because she is not herself.

“I just stopped bothering myself and I would walk off and leave her. I would leave her for five minutes and come back and she would forget the whole fight.”

Sealy said he expects her mental state to deteriorate at some point but he will worry about and deal with it when the time comes.