Dealing with dementia

"I've realised the importance of family," says Anne Cuschieri, who has spent the past 13 years caring for her mother, Rosa Borg, and watching dementia slowly take its toll. "I've realised the importance of making the most of your family because something like dementia just strikes so suddenly, and everything changes," she says.

We are sitting in the living room in her immaculate Sliema flat and Cuschieri, who was one of the first committee members of the Dementia Society in Malta, is sharing her story with me. "If my mother's story can help others, then she will not have died in vain. That is a blessing," she says.

For Cuschieri, the story began when her father, Joe, had a stroke during a surgical procedure. When he regained consciousness, he could not see. "Hearing this, my mother went into a state of panic, thinking he had gone blind," she says.

Cuschieri's father only lost partial eyesight, but within two months, her mother had started behaving unusually. "There is no proof it was the shock that triggered the dementia, but I have always thought they were related," she says.

Cuschieri's mother was a pharmacist, described as "highly intelligent - one of the few women of her generation who graduated from university." She had always kept her mind active, and so when her memory started to fail her, Cuschieri immediately thought it strange.

"It started to get worse. She'd go into a sort of trance and say something completely out of character; she'd say something horrible to my father, for example. This terrified her. She would ask us, 'What's wrong with me?'"

She was eventually diagnosed with Alzheimer's disease - a progressive, degenerative disorder that attacks the neurons and results in memory loss and behavioural changes. Alzheimer's accounts for up to 70% of all dementia patients.

"Things got worse slowly. Sometimes, she would be the same for six months, then change again, and we'd have to adapt."

Cuschieri and her husband decided to sell their Naxxar home to move close to her parents' house in Sliema. By now, her father had taken on all responsibilities: cooking, cleaning, laundry, as well as taking care of her mother, who had begun to leave the house if she was unattended, paying no attention to traffic.

Cuschieri and her brothers - both doctors who lived abroad - did as much research as they could on the condition. "I always had huge help from them, even though they weren't in Malta," she says. "I could always call them for support."

After a few years, Cuschieri and her family decided it would be best if her mother were in a care home.

"She had become a hazard to herself: she began to eat raw food from the freezer, she set fire to the dustbin. She had to have constant care, every minute," Cuschieri explains, adding it was once of the hardest decisions she'd ever made.

"The first week was horrendous," Cuschieri recalls emotionally. "Her reaction was heartbreaking. But she slowly began to settle down. I guess you take everything day by day."

She makes a point of repeatedly praising her father's dedication and love, which she says taught and inspired her and her family.

"He couldn't drive because of his eyesight, so he took the bus from Sliema to Rabat and back every day, just so he could go visit her. My husband once asked him whether he really had to go visit every day and he sternly replied: She's my wife till the day I die. I will visit her every day."

She also praises the carers at the home. "They were amazing. They loved her; they looked after her. Their job is a thankless one. They are insulted and pushed around by patients. Theirs is a true vocation. They deserve to make far more money than they do."

Things began to look up when Cuschieri saw a notice on the newspaper, saying a dementia society was to be set up. She went to the meeting and joined the committee.

"The society also does tireless work to combat the stigma associated with dementia. My family and I made the decision never to hide the fact that my mother was mentally ill," she says.

"There are people on the committee who don't even have a personal interest in dementia like I did. They dedicate so much time to the cause; it is such a noble gesture. They work hard to educate and inform people."

Eventually, she left the committee because she had too many things on her plate, but she and her husband kept organising fundraisers for the society, to help in their own way.

Cuschieri, along with Vinnie Catania, are currently in charge of the Malta Dementia Society Support Group who organise social activities for people with dementia and their carers.

Cuschieri says more government aid is needed, especially financial help. "We had to pay for everything: medicines, the home, carers, even dressings for her bed sores. Her illness cost us many thousands. The financial strain is enormous. We all made huge sacrifices," she says. "But we did it all for her because she deserved it."

Cuschieri spent the final 24 hours with her mother. She recalls it with sadness. "I'll never know if she knew who we were at the end. What I do know is that she smile she used to give me was very special. I hold on to that."

Rosa Borg died last November, after living with dementia for 13 years. Her suffering is not unique: it was estimated there are around 5,200 people in Malta with dementia and the number is expected to rise to 14,000 by 2060, according to Dr Charles Scerri, who last Monday was appointed the national focal point for dementia in Malta.

"If dementia were a country, it would be the 18th largest in the world, with international expenditure expected to reach $1.4 trillion over the next 25 years," he had said during a press conference announcing his appointment last week.

Though Alzheimer's is the most common, other forms of dementia do exist and can affect people of all age groups.

Services currently available in Malta include an activity centre and two dementia wards at St Vincent de Paul Residence, a memory clinic, and the Dementia Helpline (22 081826) at Karin Grech Rehabilitation Hospital.

"These are not enough to cater for current and future needs," says Scerri, who also confirms that Gozo lacks such services.

Moreover, in Malta, only one of the medications used to delay the symptoms of dementia is available on the National Health Service.

"My ultimate goal is to enhance high quality dementia care in the Maltese islands. One way of achieving this is to design and implement a national strategy which places dementia among the top healthcare and socio-economic priorities," he says, adding that he intends to explore new ways with which the best support can be offered to families and informal carers of dementia patients.

"Increasing awareness and training together with professional assistance by trained personnel will go a long way," he says.

Scerri says that there is still belief that dementia is part of normal ageing and this undermines timely diagnosis. "Loss of short-term memory, difficulty in verbal communication and decision making are usually the first signs. In these cases, a visit to the GP should be your first course of action."

About the Dementia Society and Support Group

The Malta Dementia Society is a non-governmental, not for profit organisation with the aim of increasing awareness of dementia in the Maltese islands. It does this by organising talks and seminars on the various aspects of dementia for carers and healthcare professionals.

The Malta Dementia Society can be contacted on Facebook, through its website, www.maltadementiasociety.org.mt, or by e-mail at [email protected].

The Support Group reaches out to all dementia patients and their carers by visiting care homes and holding informal events, so people who are immobile can also participate. This ensures the patient can still interact within a community setting, and also provides a place for carers to share stories and ideas.

Another event is being planned for 31 August - more details about it will be released in the coming weeks.

The Support Group can be reached by phone at 79298925 or 99451625.