By Resham Khiani
Daphne begins by saying, “Keep on seeing the person, not the dementia”. In other words, the aim is to maintain the same relationship though the disease is taking over. Yes, easier said than done, but we all have to start somewhere in helping the sufferer who is undergoing “vast amounts of confusion” know that love and unconditional support remains. I challenge her saying it’s difficult watching someone you love lose their memory. As someone who has experienced first-hand loss of seeing my grandmother´s memory gradually crumble, I find it hard to search for a word that describes what I experienced, considering my relative was based in India and I was in Gibraltar. Pain, frustration, anger, impatience, sorrow, sadness – these are some of the words that can come to mind. On a weekly basis I would watch via Skype that I was losing my loving grandmother to a disease, which yet requires a cure.
Few people realise that there are more than 100 types of dementia, with Alzheimer’s disease known to be the most common form. Anyone who has a family member or friend suffering with this condition can tell you one thing for sure: it’s a highly emotional, confusing and scary journey that the sufferer and carer experience. Rather than a specific disease, dementia is a range of symptoms caused by disorders affecting the brain. It affects thinking, behaviour and the ability to perform everyday tasks and while it’s more common in people over 65, those in their 40s and 50s can also develop dementia.
Keep on seeing the person, not the dementia.
Alzheimer´s International Association confirmed in a study that in comparison to men, women are far more susceptible to dementia, but no one seems to know why this is the case. Everyday there is a new article citing various reasons behind this disease: anaemia, stress, genetics, unhealthy eating… but there is still nothing to stop it. In some cases, medication can slow it down, but then in other cases pills have no effect. “This disease is very unique to each person and I´m hoping one day there is a way to control it,” Daphne says.
Gibraltar’s Dementia Day Centre provides cognitive therapy via computers and software funded by the charity. The aim is to keep the brain active through arts and crafts so that people “can feel useful”. Another creative method Mount Alvernia is going to introduce is for nursery children to visit the elderly; Daphne is paving the path for kids to also come to the centre so they can “hear stories from the elderly”.
Pony therapy for patients is one of the latest therapies introduced by a Scottish couple so patients can experience the healing effects of animals. I ask Daphne whether cats or dogs could be an alternative, but she makes a valid point: “Not everyone will go for that because if they didn´t like animals before dementia, I don´t think they would feel encouraged or agree to having pets around. I know there have been a few soft toy animals at Mount Alvernia where patients stroke them as if they were real”.
It’s a highly emotional, confusing and scary journey
Daphne recalls watching BBC programme The Restaurant That Makes Mistakes. An emotional series where dementia patients – people who were once gynaecologists, doctors, lawyers – are hired as food servers. They would note meal orders but within seconds the information would slip away, only to return to the waiting tables to ask customers for their choices once again. Overall, the show emphasised that despite their illness, they still could play a vital role in society.
Daphne does not hesitate to say that dementia stigma exists in Gibraltar, emphasising how families feel hesitant to reveal someone is suffering from this condition. Often, she says, there can be a mix up between a failing memory and mental illness – something which she already experienced with her father, which is why, I believe, she has an unwavering determination to spread awareness.
“GADS wants to change how people with dementia are viewed. We are the only support group to help people handle such situations. If you know someone at work has this condition, we should all be able to understand what it is to live with dementia so you can allow this person to continue working for as long as possible”.
The emphasis is on adopting a healthy lifestyle, but in the same breath, Daphne highlights a common phrase: “You can have a very active and healthy life and still get dementia.” An example being her father who power walked every day, never overate or drank, but at 70 years old dementia got him. In her opinion, you can exercise your mental activity as much as you want, “but there is no guarantee that you won’t get it”. Surprisingly, I’m told her father was “treated for depression for a number of years because he felt something was wrong”. The truth was dementia was taking over.
The truth was dementia was taking over.
The conversation turns emotional when she mentions her father again, confessing that her guilt haunts her every day because she “never understood what was happening” with her parent. The knowledge we have today could have been the key to the patience he needed. Awareness is part of the solution as Daphne continues to say: “Many people still don’t understand dementia and in turn they are labelled as ‘aggressive’. People do not realise how scared they feel”. She recalls when her father would turn angry, her mother would call at 2am saying he wanted to leave the house and in stopping him, he would be become difficult. Various times doctors would prescribe pills to calm him down, but the family wanted a different type of help: they wanted emotional therapy to handle the mental deterioration of a loved one. This is why Daphne has a special phone to answer calls at any time of the day or night for people wanting help or advice.
A simple mirror is what ignited feelings of her anger in her father: within seconds he would flare up, unable to recognise himself. According to Daphne, she realised, her father had no idea who the man staring back at him was: all he viewed was a fragile, ageing human. Showing him a photo of his younger self immediately sparked recognition, but bring out a mirror and it was just sheer confusion. His only recollection of himself was as a young man. Again, she hits on the awareness note: had she had this information, she would have simply removed the mirror to “stop such episodes”. Fast forward to the future and this has led to one of the dementia centres providing hide-away mirror screens that can be used at the patients will.
Her father had no idea who the man staring back at him was.
“See the person, not the dementia” is a message to all of us on how sufferers do not want to be confined by their illness. Understandably, on a daily basis they battle raw emotions of who they are, and the last thing they want is for their loved ones to treat them differently, or to become estranged from them. In contemplating Dementia Awareness Month this September, consider the way you respond to people living with this disease.