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Sunday, October 28, 2012

Saturday, October 27, 2012

Video: "Seven months after mother’s death: updates and musings", by Swapna Kishore, October 2012.

Swapna Writes Blog, "A dementia caregiver in India shares experiences and insights about life", October 27,2012.

"It is seven months since my mother died, and I sometimes get queries on how I am doing, so I’m sharing an update. My mother’s death meant I lost the person my life had been revolving around for the last several years. 

My typical day’s structure, necessary for caregiving, became redundant when she died. My sense of identity changed. My role, responsibility and activities needed a rethink. Given the sweeping change caused by her death, I think I’m handling my situation well enough."...

..." Different people must be using different ways to handle readjustments and redefinition of life. So far it seems to me that, for me, there shall be no dramatic waking up one morning to find I’m all energetic and “new”; I am traveling on a slow and gentle curve, turning just a bit with each unit of work I do and each neatened up idea I put down and then set aside. And somewhere down the line, I would have cleared up enough mental and emotional space to get the time and energy to explore things and experiment with directions I have deferred earlier. Let’s see what life uncovers". 

A Caregiver from India describes her experiences of supporting her mother through late stage dementia: 

Silver Innings, Mumbai: List of Organizations Working for Senior Citizens in India.

Silver Innings - Blog for Senior Citizens: List of Organizations Working for Senior Citizens ...: JAC (Joint Action Committee of Senior Citizens Organizations   2012) Members  1)      AISCCON 2)      International Longevity ...

List of Organizations Working for Senior Citizens / Ageing in India , Oct 2012.

"There are total 91 Organisations , please also help us to collect their contact details and also to correct and add to the list . 

Pls note this is latest updated list as on 27th Oct 2012 , we have complied the info of several years and whole idea is to take our agenda ahead of Disseminating Information and Knowldeghe to Empower our Elders , Government , International Agency and Society at Large."

Saturday, October 6, 2012

"Dementia in Hindi", by Swapna Kishore, India.

‎"The background: Over a year ago I started worrying about the paucity of online (and print) material in Indian languages for dementia caregivers. This “worry” was active enough for me to wonder what I could do about the lack of material. 

My concern was spurred after someone in Madhya Pradesh contacted me – he was using Internet on his mobile and wanted material in Hindi so that he and his family
could better support an early-onset dementia patient. 

I helped him through phone calls and by sending across some material I had. 

However, I felt concerned about how difficult things must be for someone like him who wanted support. Around July/ August last year I started exploring options for creating Hindi material myself. 

A few months later I made my first Hindi video and placed it on youtube, and in December I shared my thoughts and experiments in a 4-part blog entry (For part 1 of this series, click here: Adventures in Hindi Part 1)."...

...."they may not have considered whether the available material is:
  • understandable and usable by audiences in India (fitting into the cultural context)
  • in languages that people can read/ understand )
  • with links in forums such people can access )
  • accessible on the type of online platforms such audiences use )
  • accessible to people not in metros )
  • accessible to people who don’t have online access/ find it expensive)
I could expand the list into a much longer one, but I’m sure you get the point :)
So, in my opinion, there is not enough suitable material in India given the diversity of our people, the sheer number of languages, the geographical and economic spread, the enormous awareness gap to bridge and what not. The gap between what is needed and what is available seems huge to me.
And here is my request to you, whether you are a volunteer or a caregiver who has experiences to share: if you are comfortable enough to create material in an Indian language — whether just talking of your experience, or sharing some structured material or some data — please do consider it. The online space is open and waiting for you.
Maybe the material you create or the video you make will not go viral. There may be no award to be won. There may be no appreciation/ brownie points from peers. But the one person who reaches your material could be someone whose life will be made different by reading or hearing what you have to say.
Main links referred to in this post


Friday, October 5, 2012

Characterizing Cognitive Deficits and Dementia in an Aging Urban Population in India. 2012.

"In this paper, we describe the development of a community-based memory clinic in urban India, including linguistic and cultural factors and present detailed results, including diagnostic characterization, on 194 subjects with various stages of cognitive deficits.

Our findings support the feasibility of developing a memory clinic in a public hospital and successful use of research diagnostic criteria to categorize cognitive deficits observed in this population, which may be used to inform the development of other such clinics."...

"Good News for Dementia Care: Caregiver Interventions Reduce Behavioral Symptoms in People With Dementia and Family Distress".

..."Clinical guidelines from numerous medical organizations for managing behavioral symptoms recommend nonpharmacologic approaches, including caregiver supportive interventions, as first-line treatment (8). 

Interventions for caregivers may include skills training, education, activity planning, environmental redesign, and social and emotional support, tested either singly or in combination. 

However, nonpharmacologic approaches are not widely implemented, largely because of lack of provider knowledge concerning their efficacy and limitations imposed by reimbursement mechanisms."

...."Two key conclusions can be drawn from this study. First, the meta-analysis provides the strongest evidence to date that caregiver interventions have a twofold advantage: they reduce distress in caregivers, and they reduce behavioral symptoms in individuals with dementia. 

This quantitative synthesis of high-quality studies provides confirmation that helping families is an important vehicle for helping patients. As such, these interventions should be central to the clinical management of behavioral symptoms. 

The primary challenge remains how to widely implement and financially sustain delivery of these interventions to address the urgent need of families."  

Brodaty H et Arasaratnam C. Meta-analysis of nonpharmacological interventions for neuropsychiatric symptoms of dementia. Am J Psychiatry 2012; 169(9): 946-953. 1er Septembre Gitlin LN. Good News for Dementia Care: Caregiver Interventions Reduce Behavioral Symptoms in People With Dementia and Family Distress. Am J Psychiatry 2012; 169(9): 894-897. 1er Septembre 2012.