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Tuesday, September 20, 2011

Note for the first World Alzheimer's Day of the Facebook group Alzheimer's Disease in India. Sept. 2011.

Dear members and Friends,

On this occasion of World Alzheimer’s Day 2011, I take this opportunity to thank all of you for making this forum so informative and open to so many various discussions.

Actually, a few times ago, I thought about making a note celebrating the 1st 100 members anniversary of our group. But, while browsing the Net, administrating the forum, reading all the articles posted and being careful to give each and every one of you an answer, we crossed over the 100 members! Now, that’s also my pleasure to announce you that we’ve crossed more than 22 000 hits on the Blog… and most of them these last months!  

So, let’s welcome together our new members who we hope will find here a place to stop and discuss with us their many issues personally and professionally related to Alzheimer’s Disease.   

To introduce the group to them and remind us here its purposes, I would say that this group aims to build a caregiver’s network for/in India gathering at the same place professional carers and family caregivers. Indeed, it aims to share information and provide guidance and support through knowledge-sharing and also, by feeling free to share our ideas, thoughts and experiences. Thus, it aims to break loneliness in the caregiving experience and encourage people to question the care professionals there because as we know there’s not yet generalized support mechanisms in India.

To briefly introduce the members of this group, most of them are professional from the care system in India. They are all involved directly or indirectly in the geriatric and gerontology field in India and able to answer your questions regarding AD and dementia syndrome care. They are NGOs representatives like Mr Sailesh Mishra from the Silver Innings Foundation and ARDSI Greater Mumbai, Mr Subhankar Biswas from HelpAge India in Calcutta. Also, many medical and paramedical Indian practitioners, students from the Nightingal Medical Trust in Bangalore, some journalists are also supporting us. So far, we have reached only a few family caregivers from which Mrs. Swapna Kishore from Bangalore and trainer in the dementia care field in India. Others also joined us as we started as Mr Sheikh Shazad Usmani from Shivpuri (M.P.) and Mrs Kalpana Malani from Mumbai.  You’ll find the members introductions on the Google Doc section of the FB Page. Some others may also contact me offline as they are not yet feeling ready to disclose their situation publicly (which is understandable), they can still participate from a distance as it is an open group. Later, when we reach more family caregivers we may start a closed group only for them but for now on, we direct them to the very good one Indian Google E-group : The "Care Circle for Caregivers"; a closed group for more confidentiality where people can speak up freely between them.   

Alzheimer's Disease in India is a discussion forum; a place where volunteers from NGOs and professional carers can also learn more about the specific concerns many caregivers face at home especially the situations like bathing, dressing, feeding .… taking care of their ailing relative daily according to their disorders, personality, their likes and dislikes, their environment … . Indeed, watching over these specific situations allows us to keep track on this always progressing/evolving disease. Such numerous informative inputs would then be very important to tell the doctor at your next follow-up visit. Your experience enable all of us to better understand what is currently happening to your relative and why; build accordingly and together, including the AD patient as much as possible, a personalized daily management program/routine fitting him/her. Moreover, the family caregiver’s insights enable us to evaluate their level of distress and their current ability to overcome the difficulties all alone. This FB group then encourages the Caregivers to open-up, to address their many practical issues and discuss the different “ways of doing” worth trying because as you know, “there’s no magic solution”. Effectively, “what’s works for one person may not work with another”. There, the various professional carers may or may not respond, but at least they may be globally exposed to the caregiver priorities which are sometimes quite different from theirs.

To end, this forum also allows us to discuss the implementation of a proper carepath in India for people suffering from Alzheimer’s Disease and Related Disorders and proper support mechanisms for their families. As AD is affecting people worldwide forcing then communities to find solutions, I chose to open the forum to people with different practices and cultural backgrounds but all related to the geriatric and gerontology field. This approach aims to make people discuss together on the already existing specialized services, interventions and facilities in Dementia care worldwide especially on the benefits that emerged on the patient condition. These inputs from various horizons, within India or abroad, might be integrated to our thinking process and enable us to voice our concerns on the building of official guidelines and very expected solutions fitting the Indian socio-cultural context. Indeed, today with more than 7% of its population over the age of 65yrs old, India has been defined by the World Health Organization as an Ageing country, telling us that the AD cases would be rising.

In conclusion, I invite everybody on the forum to speak up, bring his/her valuable inputs, feed the group with much AD related topics and make it a very informative and interactive one. Of course, one should keep in mind that all the informations provided there are only general indications, they don’t replace at all a complete medical consultation and the type of follow-up suiting your ailing relative and that has been specified by your own specialist practitioner. All these informations are there to enlighten you and help you to prepare your appointments with the professional carers. Private consultancies with specialists and/or members of this group can be done/arranged through their inbox. These arrangements are under your own responsibility and not of the group.   

Have some good discussions,
Hendi Lingiah,  
Clinical Psychologist in Gerontology.        

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