Elizabeth

My mother died from dementia just over a year ago. She was 79 years old and had been first diagnosed in her late 60s.

Prior to that she spent just over two years in a locked dementia unit, initially classified as low care. She was prescribed haloperidol and it was used routinely in her residential dementia unit. I do not think it directly contributed to her death though it did affect her quality of life.

I was appalled that the dementia specific facility she resided in seemed to use the drug to control her 'behaviours'. These dreadful(?) 'behaviours' were things such as very politely asking staff what she was supposed to be doing and seeking reassurance as to where she was. When the staff used to ignore her questions she would keep asking which would annoy them! There was never any sign of aggression from her. Never once was there an attempt to meet her needs. My mother’s condition always improved when she went to hospital as she would have regular interaction from nurses etc who would not just ignore her.

During one hospital visit a physiatrist was called in to asses her. The verdict was there was no indication for the use of the haloperidol – she just needed more social interaction from staff. It was written up to be used when required. However, when my mother returned to the dementia facility it was given to her most days to sedate her and to keep her from annoying them.

Something else that I think is scandalous and needs to be investigated in these dementia specific care facilities is the over reliance on the use of Sustagen. Most residents in my mother’s facility were given Sustagen when their weight did not meet a certain criteria. However, no one ever tried to encourage the patients to eat normally. At meal times food was placed in front of people, then after a certain time the food taken away whether it was eaten or not. There was never any encouragement or assistance to eat the meals provided.

Weekly, everyone was weighed and then put on Sustagen if deemed under weight. If only the patients had been encouraged to eat a little more I am sure there would have been no need to use this supplement. I wonder how widespread this practice is?

Dementia facilities are chronically understaffed. These patients are so vulnerable, agitated and confused. My mother was punched in the face by one of the other patients. Until this moment, my mother had never seen or experienced violence. People really need to know what is happening in these facilities.

My mother's twilight years were an unimaginable horror for her and for me. I am very concerned that people fail to understand the difference between aged care and dementia care. The confusion seems to stem from the fact that the majority of people suffering from dementia are aged. They are suffering from a terminal disease - not simply a process of ageing.

I sincerely hope that the needs of dementia sufferers will not simply be bundled up into an aged care package promoted by the government as the new way forward. Dementia care needs staffing ratios specific to its unique requirements – not simply an aged care formula. It requires staff with special skills both diagnostically and empathetically.