How I Make A Difference
Amit Dias, Researcher, India
Five years ago, there was hardly any awareness about dementia in Goa. Research has revealed that not only does dementia exist but all forms of it are prevalent. This focussed and planned research over the last five years has led to a considerable increase in public awareness, which has put the issue on the public health agenda.
Research really can make a difference!
It is estimated that the number of people with dementia in the developing world will rise rapidly in the next twenty years. There is no doubt that there is a need for more quality research that will help build a concrete framework for dementia service development in these countries.
We have already started... The Dementia Society of Goa developed and evaluated the first community based invention programme, provided by Home Care Advisors, for people with dementia in India. It demonstrated a positive outcome for carers and the quality of their care. Kusum is a good example: when she became Laxmi's carer, she had hardly any contact with the outside world. Visits from the Home Care Advisors have dramatically changed her life. Once again, she has been motivated to read, listen to the radio, knit and embroider - whilst still looking after Laxmi.
We can make quality care a reality!
David Skipper, Person with Dementia, Australia
For the six to nine months after my wife and I received the diagnosis, we went through a range of emotions including anger and denial. It was only when we got in touch with Alzheimer's Australia Western Australia (WA) that we saw hope in our situation - sort of like 'light at the end of the tunnel'.
We volunteer as representatives and spokespeople for Alzheimer's Australia WA to bear testimony to the disease. I feel privileged that, despite my condition, I can still front the public and the media. We've spoken at public forums and visited retirement villages to shares our experiences about the disease. We are also part of the Alzheimer's Australia WA's Consumer Advisory Committee that handles feedback from people who use the organisation's services.
My message to the global community would be; don't be afraid to open your mind and overcome ignorance. Dementia doesn't just affect people 80 years and over - it can happen to anyone as young as 45.
Meribel Mallens, Carer, Puerto Rico
When dementia knocked on my door, with my mother's diagnosis, I felt my world collapse. I now see what was a dominant, independent woman await instructions from her daughter in order to function in her daily life. Her condition no longer allows her to drive, cook, handle her finances or, at times, even convey her own desires. After three years of living with the illness, I have dedicated myself to reading, learning and participating in educational seminars - I seek out all the information and tools necessary to offer her 'dignified dementia'.
Knowing that there is no cure motivates me to stimulate my mother, to encourage her to participate as much as she can and to maintain her active mind by laughing, loving, feeling and offering her valuable input. She is still a human being. My mother is in the early stages of dementia and I am confident that I will keep her this way for a long time. Faith is the last thing that should ever be lost and I am sure I will never lose mine.
I must admit that my life has changed drastically. Dementia is very challenging and you often ask yourself, 'what is best for them?' There are so many factors that one does not plan: the cost, the time, the dedication but, most of all, the patience and love that caring takes.
The tools are available; it's only a matter of wanting to learn.
Sgt. Don Webster, Provincial Search and Rescue Co-ordinator, Canada
It is my responsibility to ensure effective search management principles and policies for people with dementia if they go missing in my area.
In a proactive attempt to ensure a more effective search response for missing people with dementia, we have worked with the Alzheimer Society of Canada to develop 'Search Is An Emergency - Pre Plan Manual' for long term care facilities. It emphasises that thinking ahead is key; for example, having up to date photos of patients on file.
An emergency exists when a person with dementia goes missing. As responsible members of the community, we need to do our best to find them as quickly as possible.
Until a cure is found, family members of those with dementia need to discuss technical monitoring as an option to help to quickly locate their loved one. People need to discuss the sensitive issue of what an acceptable amount of invasion of privacy is versus saving a life. I encourage family members of those living with dementia to ensure their loved ones are registered with the Alzheimer Wandering Registry.
Things are improving. As the baby boomer generation becomes older, people are more perceptive of the issues surrounding dementia. With people becoming more open, there is less denial and this allows for improved dialogue about the best way to handle the problem of wandering.
Where next?
- Letter to health ministers
- Events on World Alzheimer's Day 2005
- World Alzheimer's Day 2005
- About World Alzheimer's Day