We have around 5 persons affected by a cognitive impairement in our group Alzheimer's Disease in India and all from abroad.
They are all involved through their various actions on the Net, their local environnement, conferences worldwide in speaking out about their life with "dementia", the importance of raising awareness to improve the quality of life of patients and their families, build knowledge and support, proper structures and trainings, start considering the patients as stakeholders in this journey, on the importance of research, the hope for medication...
"Voices of Dementia patients in India" would be very welcome, very helpful to raise awareness. Obviously by explaining their perspective they would surely have some more visibility and then contribute to the changes in the mindset toward patients: they have opinions regarding their disease and disorders, care giving and could be involved in their daily care and decision-process about their own life path...supported by their families/caregivers of course.
They are all involved through their various actions on the Net, their local environnement, conferences worldwide in speaking out about their life with "dementia", the importance of raising awareness to improve the quality of life of patients and their families, build knowledge and support, proper structures and trainings, start considering the patients as stakeholders in this journey, on the importance of research, the hope for medication...
For more disclosure, there are also the Memory People facebook group some of us are also members of, a closed one gathering a lot of patients and caregivers mainly based in the USA but which is very open to all persons concerned as Alzheimer's Disease and related disorders know no boundaries.
"Voices of Dementia patients in India" would be very welcome, very helpful to raise awareness. Obviously by explaining their perspective they would surely have some more visibility and then contribute to the changes in the mindset toward patients: they have opinions regarding their disease and disorders, care giving and could be involved in their daily care and decision-process about their own life path...supported by their families/caregivers of course.
It is far from being a paternalist approach of the care but visibility is not always wished by people maybe according to the level of social pressure they may have to face in certain societies where "ignorance" about some diseases is still strong as the stigma regarding mental health.
How would families and doctors react if patients in India start claiming for more informations, better care and support in their autonomy? Would it be something completely new in the country? would it be totally out of the indian culture? would it increase the social pressure against those who dare claiming or would it help in changing practices progressively?
Hendi Lingiah,
Clinical psychologist and administrator of Alzheimer's Disease in India.
Clinical psychologist and administrator of Alzheimer's Disease in India.
2 comments:
Nice Article About ""Voices of Dementia Patients in India", would it ever happen? by Hendi Lingiah."
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I think it is very important to know what dementia patients in India experience, and if some of them choose to share their stories, thoughts, and opinions, it would be very useful for all of us. Unfortunately I see a number of blockers (1) the stigma/ sense of privacy that may stop people from explaining what they are undergoing, (2) delayed diagnosis, which means that by the time someone is diagnosed, the person may not be in a position to understand the diagnosis, and (3) the poor awareness levels in society, which means the diagnosed person has no overall framework within which to understand what he/ she is experiencing, or know the value of sharing it.
So far, we have to rely mainly on the voices from other countries to understand what happens, but some experiences are related to the social and cultural environment in which the person with dementia is living. Some experiences depend on the way our family structures work, and the expectations and support around seniors in our society. I guess we will just have to keep hoping that some persons with dementia will open up and talk about their situation, even if under anonymity.
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