Mental Health


Mandy Kloppers

Dementia Stories


One of the saddest jobs I ever had was working with people experiencing dementia. After six months I had to stop as it was beginning to affect my mood negatively. No matter how passionate and effective I was, there was nothing I could do to improve the patient’s quality of life. Here are some of the crazy experiences I had during that time eight years ago…

First of all – a little about dementia: Dementia is a general term for loss of memory and other mental abilities severe enough to interfere with daily life. It is caused by physical changes in the brain. The most common type of dementia is Alzheimer’s which involves memory loss and is progressive – it worsens with time. Possible signs that someone is developing Alzheimer’s are: memory loss, difficulty in planning ahead, confusion, difficulty completing familiar tasks, trouble processing visual images and spatial judgement, misplacing items, poor judgement and changes in mood and personality.


Some other forms of dementia: Vascular dementia (bleeding in brain), Dementia with Lewy Bodies (abnormal clumps in brain from protein – alpha synuclein), Parkinson’s disease (alpha synuclein clumps in brain that cause degeneration of functioning brain tissue), Frontotemporal Dementia, Creutzfeldt-Jakob Syndrome, Huntington’s disease (genetic abnormality) and Wernicke-Korsakoff Syndrome (from alcohol abuse).


I used to visit people with dementia who had been placed in care homes and my job was to check that they were being properly taken care of. My official title was “Mental Health Advocate”. Many of the patient’s families had stopped visiting and I was the only impartial visitor who could flag up any issues…and boy did I find many issues!


Sometimes it was due to the staff being neglectful but at other times it was due to the families and their inability to deal with the state of their loved ones. I remember meeting one woman, she had married and three months later had developed dementia. She sat in the same chair, day after day and never spoke – she was completely incapacitated and needed care for all bodily functions and feeding. The one day I asked the staff if they could take her out into the garden as she never left her room. Her husband called me and angrily insisted that she stay in her room. He said that he did not want his wife mixing with other “crazy people because she was not one of them”. So, this poor woman stayed in her room (her husband hardly ever visited) and she passed away soon after. She was only in her late fifties.


Another time I visited another ward and found an elderly woman sitting in her wheelchair with her legs stretched out, balancing on the window sill in front of her. She was pushing with her legs and was close to causing her wheelchair to flip backwards. The staff knew to leave wheelchairs without brakes on but someone had forgotten this time. I found patients lying in bed with a pad wedged between their legs and no underwear on ( no doubt to save the staff time) and became accustomed to seeing the same people in the same position in the same room day after day. It made me realise that I wanted a Living Will – I would not want to continue with no quality of life.


There were some wonderful staff members though that really cared and there were also spouses who visited their loved ones without fail despite their formers husbands/wives not knowing who the hell they were. The dedication of this minority kept my faith alive. One of my regular patients never remembered who I was and each time I saw her we would have the same conversation as to who I was, what my name was and what I was doing there. She would ask me how my brother was (I don’t have a brother) and would talk about the war. Another patient used to ask me for stamps and a pint of milk. It was an unusual job but at least these people had someone to speak up for them.


On another occasion, I met a woman who had been sectioned and brought into a mental health ward after her home caught alight. It turned out that her husband had died a few months earlier and she had started developing dementia. She had forgotten to pay the electricity bills and her power supply had been cut off. She then started to use candles and had forgotten to put them out one night – hence the fire. She still had moments when she functioned well though and during one of these moments she told me that she had been brought to the hospital in the middle of the night and that she hadn’t been taken back to her home since. She had no family or friends that could help and was worried about her home.


Against protocol, I went to her house. She told me where she usually left her handbag and front door keys – upstairs on her dressing table. The fire had happened a few weeks earlier and I was surprised to find that her front door had been left open and unlocked. All the lights were on too. As I approached the front door – a young man ran out carrying a stereo! I was incensed that her home had been left like this.


As I went inside I saw how she had been living before the fire. There were shoes scattered everywhere and old ready meals and take away packaging were randomly strewn about – on the stairs, on the furniture. There was old food and half empty coffee cups on the floor , it was a real mess. Plastic grocery bags with litter inside were covering the floor. I managed to make my way up the stairs (climbing over crumpled up clothing, take away cartons and general paraphernalia) to her bedroom where the main part of the fire had destroyed most of the room. Luckily, I managed to find her handbag, her passport and keys and took those back to the hospital for her. I turned the electricity off and locked the front door on my way out.


I was appalled to see how her home had been left. Where was Social Services? I got into deep trouble with my boss when he found out what I’d done as I could have been blamed for any theft in the house but I refused to adhere to mindless bureaucracy in this instance. This poor woman was starting to lose her ability to think and function clearly and there was absolutely no one to take care of her. One thing I learned during that time was that as soon as you think you are developing dementia, sign over “Power of Attorney” to someone that you trust in order for them to take care of your financial affairs. If this isn’t done and you are considered not to be of sound mind, as far as I know, the State then gets to decide what happens with your financial assets. They do not automatically become a family member’s responsibility and an application to court to obtain access will be necessary which is time consuming and expensive! The court has to investigate thoroughly as there is no proof of consent.


Dementia is a cruel debilitating disease and robs people of their ability to look after themselves. On a more positive note, medical progress is gaining momentum all the time:


“I am more encouraged for the future now, than I have ever been,” said Dr Eric Karran, director of research at Alzheimer’s Research UK. “We now understand far better, that the pathology of this disease starts early on, maybe 10 years before we see any symptoms. We now have the tools to image that pathology…that will enable us to investigate drugs that will affect it. I am full of hope that we are going to have a breakthrough in the next five years.”


Clinical trials of the Alzheimer’s drug solanezumab had already shown the potential for it to be effective in mild cases, he said, adding that the manufacturer Eli Lilly was now working on further trials to investigate its effect on patients with mild symptoms of dementia.


Highlighting the urgency of scientists’ efforts to combat the disease, the Alzheimer’s Society published new figures revealing that the global burden of dementia has increased by 22 per cent in just three years. 44 million people worldwide now have the disease, a figure which is projected to rise to 76 million by 2030. In western Europe, incidence rates are on track to double by 2050.


Dementia is set to be high on the international agenda in 2014. Health ministers from the G8 group will meet next Wednesday in London for a summit that researchers hope will secure new commitments on funding and international collaboration in dementia research. I am hopeful that the focus on dementia will provide valuable insights and new ways to alleviate and possibly even cure this awful disease.


Mandy X


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