By Suzanne Koelega

LEIDEN–With dementia on the islands on the rise like everywhere else in the world, it is imperative that stakeholders work together not only to establish the necessary care for the patients, but to also create more awareness and comprehension.

People with dementia deserve respect, but don’t forget the family members that care for them on a daily basis. It was this message that Mireya Ostiana-Wijman shared at the lecture of the Curaçao association of medical specialists AMA at the Leiden University Medical Centre (LUMC) on Saturday.

Ostiana-Wijman shared her story of her husband Henry Ostiana, who suffered from vascular dementia and passed away late November last year. Ostiana-Wijman took care of her husband after his diagnosis in 2013, the first years in St. Maarten and from 2016 in the Netherlands.

Her story was mostly one of love, dedication, enjoying life, but also of heartbreak and plain hard work to take care of a person on a daily basis who became increasingly dependent. Ostiana-Wijman described their life after her husband, Director of the Rehabilitation Department of the Windward Islands from 1994 until 2000 and a Lieutenant First Class at the St. Maarten Voluntary Corps VKS, suffered from a brain haemorrhage in 2011 and was diagnosed with vascular dementia in 2013.

“We made a true effort to enjoy our life together until the last moment, doing things that we liked: going out, dancing, having fun. My love for him grew after he got ill. We shared everything together and taking care of us made our bond even tighter. Love is so very important. When the neurosurgeon in Colombia diagnosed him in 2013, we knew there was no way back, so decided to enjoy our life together to the max,” said Ostiana-Wijman who has already given many presentations to explain what it is to be a fulltime caretaker of a loved one with dementia.

The possibilities for professional medical care and assistance at home are very limited in St. Maarten, especially in comparison with the Netherlands. The St. Maarten Alzheimer Foundation has an office on Back Street where people can do a dementia test, and the White Yellow Cross is doing a good job caring for the sick, elderly and handicapped, but is too limited for a person with a severe form of dementia.

“There is not sufficient specialised care in St. Maarten that caters to the specific needs of the individual patient,” said Ostiana-Wijman. Moving abroad is certainly not an option and not even recommendable for most patients. Remaining in their own, familiar living environment is better for most patients.

But after many efforts to find suitable care for Henry Ostiana in St. Maarten, the couple decided to move to the Netherlands in 2016, where there were possibilities for him to do volunteer work, which made him feel that he was part of society, making himself useful. After his health prevented him from doing this work, he took part in the daily activities programme, until August 2017 when his condition had deteriorated in such a way that he had to be admitted to a nursing home.

Difficult task
Taking care of a person with dementia, especially when they are in an advanced stage, is a very difficult task. Therefore it is important to also to take their needs into consideration and to support them. Recognising the illness and accepting help is vital for the caretaker and the patient’s immediate family.

But most importantly, have respect for persons with dementia, said Ostiana-Wijman. “Let them be themselves, let them do their own thing, be patient and understanding with them, involve them, don’t lock them up.”

People are not always understanding when they have to deal with a person with dementia. They lose their patience and many times don’t know what the person suffers from. That is also because many times it is not clear to the outside world that a person suffers from dementia.

Creating more comprehension in society for dementia is needed, and so is providing information about the illness, especially because it is still taboo to discuss and acknowledge it in the open. Breaking through this taboo and helping dementia patients in the Windward Islands are two important objectives of the Henry Ostiana Foundation. Ostiana-Wijman announced that a fundraising evening would be held on November 26, exactly one year after her husband died.

Curaçao psychiatrist Gilbert Thomas, who is one of the founding members of the Curaçao Alzheimer Foundation, told the story of one of his patients, an 85-year-old woman who became very forgetful and suspicious of people around her. She moved in with her daughter, but didn’t make things easy for her direct family. She continuously wanted to run away from home.

The woman, a retired teacher, accused her daughter of stealing and blamed her son for not visiting her often enough, while he came around almost every day. She became incontinent, but denied this and got upset when confronted with this aspect of her advanced dementia. After a while the woman needed to be admitted to a nursing home where she died six months later of pneumonia.

Lost personality
The woman in question had lost her personality. Another aspect of dementia is the danger of isolation and loneliness, not only for the patient, but also for the caretaker, said Thomas, who has given many lectures on dementia on the Dutch Caribbean islands and has visited the Windward Islands on many occasions in the past to see patients.

The Curaçao Alzheimer Foundation frequently organises activities for patients with dementia and their caretakers. The foundation, which is a member of Alzheimer’s Disease International (ADI), has drafted a national plan which has been presented to the Curaçao government to prepare, as Thomas put it, for the looming tsunami. Because with the ageing of the population, dementia will become a much more urgent issue for which governments and healthcare organisation have to prepare.

Saturday’s lecture was opened by Chairman of the AMA Dr. Lung Jeung, an organisation that was launched in 2017 to serve as a connection between the Netherlands and the islands. Assisting medical specialists who want to return to the islands in finding the right job or internship is one of the objectives, but also to organise congresses, lectures and social activities.

AMA members Thaïs Tong and Kendrah Magloire gave a presentation about dementia, a collective name for more than 50 diseases, of which Alzheimer’s and vascular dementia are the most common. More women than men get dementia, while there are also genetic factors. People with an unhealthy lifestyle are more likely to get the disease. It is mostly a disease of elderly persons, but it can also affect people as young as 40.

Dementia often starts with loss of memory, forgetfulness and speech problems. The patients show behavioural changes and they begin to need help. Often it is the direct family who first notes the disease. “They forget appointments, they have more trouble using their utensils, have trouble finding the right words, they become repetitive in their words and they get lost,” said Kendrah Magloire.
There is no cure for dementia, but there is medication to slow down the disease. Treatment is focussed on assistance and coaching. Changes often have to be made at home. The caretaker should not be forgotten. There are several organisations on the islands that provide care for persons with dementia, with the two most specialised institutions being in Aruba and Curaçao.

A point of concern is the cultural/social acceptance of dementia. “It is still a taboo subject on the islands,” said Thaïs Tong. Other concerns are the complicated family dynamics, the lacking political support, care at home, availability of financing, the ageing of the population and the shortage of specialised medical doctors. For Mireya Ostiana-Wijman this all the more reason for society to tackle this increasing disease as a team.

Bron: Daily Herald