Retired pharmacist Rosa Borg was sitting at the dinner table with her family when she suddenly fell into a trance. She sat still, staring into thin air for about 10 minutes.

When she snapped back into awareness she started sobbing. She knew something was terribly wrong with her.

Rosa was 71 when she was diagnosed with Alzheimer’s disease. Her brain was dying, her memories were fading away and, perhaps most painfully, she knew it.

Her daughter, Anne Cuschieri, witnessed the process up close. Anne, the youngest of three siblings, became her mother’s carer and supported her ageing father as he dealt with the heartbreak of being forgotten by the woman he loved.

Anne Cuschieri, whose mother Rosa Borg died of dementia, fights to give people with dementia a voice.

Dementia is an umbrella term that refers to several conditions and symptoms associated with a decline in memory or other thinking skills, severe enough to reduce a person’s ability to perform everyday activities.

Alzheimer’s is the most common type of dementia, causing problems with memory, thinking and behaviour. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.

“My mother knew there was something very wrong with her and she was terrified,” says Anne, sitting in the living room of her Sliema apartment.

Anne recalls how the family first realised there was a problem when her mother began repeating herself. Soon after the repeating started, the trances followed.

Rosa Borg died of dementia.

Learning to live with dementia

After consultation with doctors and psychologists, her mother was put on medication to try to slow down the progress of the disease.

The first years were the hardest.

“Relatives suffer tremendously. But the dementia patient suffers a million times more. The beginning is very hard. They know there is something wrong with them and they know they are losing their memory,” says Anne.

The family decided to be open about the condition, informing neighbours because they needed their support.

Caring for her mother was exhausting for both herself and her father, Joe. So, after some time, Anne – together with her husband and their two children – moved from their Naxxar home to Sliema to be closer by.

Rosa Borg on her graduation day.

“She started escaping from my father – who had a history of heart disease. She would cross the road without looking and come to me and ring the doorbell and start crying to be let in. She’d say: ‘I want my mummy’. They live in the past. Then she would come upstairs. I’d sit her down and call my father and tell him she is here.

“She would talk about ‘a stranger’ in the house – referring to my father. Then she would say she has to go because the children are alone at home. There was huge confusion. I’d tell her: ‘Ma, I’m your child’. I don’t know who I was to her when she was talking to me,” Anne says.

Rosa and her husband Joe Borg.

Difficult decisions

The family tried hard to keep their mother at home – a place that was familiar to her. But things started getting out of hand.

“She stopped recognising my father. He started locking the door and she started climbing out of the ground-floor window. I was a mess – coping with work, with my father and my mother. I was even helping with my father’s sister – my aunt – who lived round the corner and had dementia too,” Anne says.

Her aunt, May Borg, had vascular dementia. She wrote down parts of her life story on a calendar to remember who she was.

“Even she knew she was losing her memory. They grab onto that and they are terrified. They stop wanting to meet people and go out because they know they can’t handle a conversation.”

Anne’s two older brothers, who both live abroad, supported from afar. She also had great support from her employer who allowed her the flexibility to be able to care for her parents.

Eventually the family had to move Rosa into a care home.

“My mum would wake up in the middle of the night and go to the kitchen and start defrosting and eating chicken. She would walk into the shower with her clothes on. My father was weak and could not rest. We were both exhausted: physically, psychologi­cally and emotionally. We were judged with comments such as: ‘I kept my mum with me till the end.’”

May Borg, the aunt of Anne, wrote down her memories on a calendar to remember who she is.

Moving Rosa out of the house and into a care home was traumatic for all.

The family was also dealing with Joe’s complications from heart surgery and Anne’s diagnosis with cancer.

As the years passed, Rosa’s condition deteriorated. She died in 2012, 12 years after her diagnosis.

“You are grieving from the first day because you are losing the person. My father went through moments of frustration. He was a very calm man, but he was very tired. When she moved into a home, he went to visit her every day. He would tell us that he married her in sickness and in health and until death do them part.”

He died a year later.

Some of the memories written on the calendar.

Throughout this, Anne had the support of her family and the Malta Dementia Society. She is now working to ensure that support is even more visible and accessible for people with dementia and their families, and has taken on a more active role in the society.

Charles Scerri, an associate professor at the University of Malta’s Department of Pathology and co-founder of the Society, said it is beneficial for people with dementia to live in the community if possible as this allows them to remain in a familiar environment.

This is why early diagnosis is important as it allows for better treatment and gives the person a chance to take decisions.

While Malta has made great strides in the dementia field, there was still a lack of trained staff and specialisation.

More memories written on the calendar.

He spoke about the need for more awareness about how dementia is impacting society. Dementia costs more than cancer and cardiovascular disease. International figures show that dementia costs between €23,000 and €28,000 per person per year.

Scerri spoke about the need for more investment and about the importance of employment flexibility for filial caregivers.

According to Eurostat data published last October, Malta recorded the highest rate of deaths caused by dementia in Europe, with just over 80 deaths per 100,000 people in 2020. A total of 6,552 were registered to have dementia in 2018. That figure is expected to reach 14,117 by 2050. 

This year, the government launched the seven-year National Dementia Strategy.

Poster of the conference on dementia in September.

The Malta Dementia Society offers support to people with dementia and their loved ones in care homes and in the community. Services include DancingToDementia for people with dementia; Reaching Hands Support Group for relatives; the Malta Dementia Working Group for people living with early dementia; and Kuluri u Tifkiriet, which is a reminiscence art therapy programme for people with dementia.

Services also include talks, legal support, psychotherapy and cultural outings. In September the society will be holding a conference to mark its 20th anniversary.

For more information visit maltadementiasociety.org.mt or e-mail info@maltadementiasociety.org.mt.

You can read more of Anne’s experience through her blog.