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Tuesday, December 27, 2011

Interview of Sailesh Mishra from Silver Innings Foundation Mumbai on The Alzheimer's Speaks Radio Show of Lori La Bey (USA).

Interview of Sailesh Mishra from Silver Innings Foundation Mumbai on The Alzheimer's Speaks Radio Show of Lori La Bey (USA):

Silver Innings Foundation Dance Therapy 12/27 by Alzheimers Speaks Radio Show | Blog Talk Radio

"Situation Analysis of the Elderly in India", June 2011. (2)

Report "Situation Analysis of the Elderly in India", June 2011; Central Statistics Office Ministry of Statistics & Programme Implementation, Government of India.

"In India with majority of its population aged less than 30, the problems and issues of its grey population has not been given serious consideration and only a few studies on them have been attempted in our country. To reap the advantage of demographic dividend, the focus is mainly on the children and the youth and fulfillment of their basic needs for proper development. 

Also the traditional Indian society and the age-old joint family system have been instrumental in safeguarding the social and economic security of the elderly people in the country. However, with the rapid changes in the social scenario and the emerging prevalence of nuclear family set-ups in India in recent years the elderly people are likely to be exposed to emotional, physical and financial insecurity in the years to come. 

This has drawn the attention of the policy makers and administrators at central and state governments, voluntary organizations and civil society." 

Or request by email at :

"Situation Analysis of the Elderly in India", June 2011. (1)

REPORT : "Situation Analysis of the Elderly in India", June 2011; Central Statistics Office Ministry of Statistics & Programme Implementation, Government of India.

"In   India   the   size   of   the   elderly   population ,   i . e .   person s   above   the   age   of  60   years   is   fast   growing   although   it   constituted   only   7 . 4%   of   total   population   at  the   turn   of   the   new   millennium .   

For   a   developing   country   like  India,   this   may  pose   mounting   pressures  on   various   socio   economic   fronts   including   pension  outlays,   health   care   expenditures ,  fiscal discipline,  savings   levels   etc. 

Again  this   segment   of   population   faces   multiple  medical   and   psychological   problems.  

There   is   an   emerging   need  to   pay   greater   attention  to   ageing -  related   issues  and   to   promote   holistic   policies   and   programmes  for   dealing   with   the  ageing    society ."

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Needs for healthcare for elderly in India, concludes study. THE HINDU, 2011.

"Special provisions needed for healthcare for elderly, concludes study". Article by AARTI DHAR, THE HINDU, NEW DELHI, December 26, 2011.

In Tamil Nadu, the most common self-reported chronic morbidities among the elderly were chronic joint pain (61.3 per cent), eye and ear problems (38.4 per cent), hypertension (20.7 per cent), diabetes (13.9 per cent), heart diseases (4.4 per cent), chronic respiratory illness (2.9 per cent), stroke (1.2 per cent) and chronic mental illness (0.6 per cent).
However, in Kerala, 71.6 per cent of the elderly had at least one of the chronic morbidities at the time of survey with hypertension topping the list (57.3 per cent), chronic joint pains ( 37.5 per cent), diabetes and ear/eye (32 per cent each), heart disease (17.1 per cent and asthma (11.4 per cent).

"Also, in Tamil Nadu, most of the chronically ill elderly (46.5 per cent) accessed government healthcare services, followed by private hospitals (31.4 per cent). Five per cent accessed health care by village-based health clinics of HelpAge programme while 15.2 per cent took no treatment and the utilisation of Indian Systems of Medicine was less than 1.5 per cent on an average.

In Kerala, surprisingly most of the elderly received treatment from private hospitals (55.8 per cent), followed by government hospitals (34.6 per cent). Five per cent had adopted Indian Systems of Medicines and 2.4 per cent did not take any treatment."

Or request by email at :

The Hindu : News / National : Special provisions needed for healthcare for elderly, concludes study

Tuesday, December 20, 2011

"A Caregiver's testimony from Delhi, India" on “The Indian Caregiver’s Corner”.

Testimony edited with permission of Mrs Anusuya Datta, primary caregiver with her mother in Delhi of their husband/father suffering from a neurodegenerative disease, a type of dementia : Progressive Supra Nuclear Palsy (PSP).

“The Indian Caregiver’s Corner” :

This section is made in part, to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India. 

Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….

A Family Caregiver sharing her experience in Delhi:

"I am from India, New Delhi. My father has been recently been diagnosed with PSP (progressive supra nuclear palsy) with frontal dementia. the docs said its pretty advanced stage. he suddenly took a plunge two months back and from a walking talking man he is bed ridden with almost zero speech abilities and even abillity to understand basic requirements of life like food and toilet etc. we are quite new to the whole thing. Dad had been showing some very weird behaviour -- to the point of being extremely selfish and conceited in the last few years. 

We had suspected dementia or some kind of mental problem but since his memory was more or less intact, The docs never took our worries serioiusly. Meanwhile his movements were getting slower and difficult. the orthos we consulted couldnt come up with any reasons naturally. Its only when he has taken to bed and cant walk without help and shows a very prominent backward gait and almost zero eye movement and a mask-like face -- which i am told are the give away signs of PSP. 

To cut the long story short, I am here to get some first hand knowledge about how to deal with such patients. We dont have much support in terms of local support centres or counsellors. Also, I believe world over not much research has been done on PSP."

"In delhi there is next to nothing in terms of supprt and good diagnosis. From the little I have interacted and read up in the last few months I think the indian govt doesnt have a policy on dementia and general elderly care. dementia is a mental disease for the elderly here.and as per indian mindset,elderlies who need care are always destitutes or people who are not taken care of by their children. There seems to be no middle ground. 

I dont know in terms of research, but at least that hasnt created awareness or even empathy among the medical fraternity at large to even diagnose the disease instead of dismissing it as just another mental/spousal problem.which is what we faced for the last 2/3 years. When dad was showing distinct signs of dementia, the docs said it was his problem with mom or us, may be we didnt treat him right etc etc.

Finally when he fell sick and lost almost all capabilities of moving or speaking etc, Even then the docs at a very premier institute of mental health and behavoiur (VIMHANS) in delhi dismissed it as not dementia. They said he is a selfish man with selfish needs and there is nothng that can be done about it. They kept him for one and half months and ran tests and drugs on him like whatever they felt like. Finally they couldnt explain what his problem was. 

Later when I took him to another establishment under the supervsion of another doctor who deals in dementia and geriatric studies, just by looking at his gait, eye movement and his history they diagnosed his problem as PSP with frontal dementia. 

I just dont get it. either the first set of docs simply didnt care, or they didnt know.thats how I have been seeing people around us behaving. Also, in terms of supprt groups, trained attendants.there is simplky next to nothing, at least in delhi. and cost? lets not even talk about it! there is no sate support. everything -- from diapers to attendants -- are so expensive. in india, its supposed to be a disease of the rich its just been a few months and we dont even know as simple middle class people how we will drag it for the years to come!!!!"

Alzheimer's Disease in India :
Thank you so much for sharing your experience with us on our Facebook group. I am sure the other Caregivers facing similar situations there would be very moved by seeing all your efforts in making your mother feel comfortable through the disease.
Indeed, each testimony is important for us because other Family Caregivers in India, may find there the support and relief they needed, benefit of your "advises and tips" and you may even have enlighten their pathway then.
So dear Members and Reader, thank you for bringing hope, by participating even if you don't have a "serious" problem/case but even just feelings/thoughts are worth to share. It is really helping us in raising awareness on this disease, to bring support and knowledge for Dementia Care Management in India.

More infos on PSP at :

Sunday, December 18, 2011

Poem of a son expressing his father's feelings through Alzheimer's Disease.

"It is amazing how sometimes words come to mind to express a thought or viewpoint without warning. This little poem expresses my view of my Dad's dementia."

"My Prison Mind.

I live inside a prison,
The prison is my mind,
Where darkness slowly creeps within
And leaves no light behind.

My thoughts are ever changing,
Like storms they race around,
Not constant, ever twisting,
Connections never found.

My dreams become reality,
Possess my waking thought,
Confusing all my memories,
My life they do distort.

My essence is being eaten,
By a monster with no slayer.
And nothing can destroy it,
Not love or even prayer.

I live inside a prison,
The prison is my mind.
No windows shedding any light,
No doorway can i find.

Condemned to a life sentence,
No chance of a reprieve,
Locked away until the end,
No peace do i receive.

Release me from confinement,
Break the strangling chain,
Take me to a better place,
Take away the pain."

By Patrick Fisher - 9 August 2011, Memory People Facebook Group. 

Saturday, December 17, 2011

QUALITATIVE SURVEY based on your personal experience of the AD primary care level in India.

"Questionnaire on possible reasons for the Under-Diagnosis of Alzheimer’s Disease and Related Disorders in India. (at the GPs level). This questionnaire is only a start for a more comprehensive survey including the different aspects ( medical, socio-cultural, economical...) of AD under-diagnosis in India today. 

To all my friends and members living in India, in the aim to better understand the detection process regarding Alzheimer’s Disease and Related Disorders in India, I made a questionnaire (yes another one;-). 

I’d like you to answer sincerely as the questionnaire will remain anonymous. It is a good way to convey and discuss altogether of the “picture of the situation” patients, their families and professional carers in India are facing. 
I’ve tried to be exhaustive but I certainly forgot many options. 

Don’t hesitate to discuss and give your explanations/views/insights for a better understanding of this specific situation in India today, to find ways to improve the diagnosis. 

All constructive inputs are welcome.

I'm interested in your answers according to the experience of each one of you in India that's why I sent the questionnaire to each of you. It'll remain and treated anonymously for you to feel safe to share your personal insights as I am interested in that too. 

Also it'll helps us to start a discussion and get tracks to work on for a better improvement of the "dementia carepath" in the future in India. To voice our concerns toward the authorities in the field and give us more weight in the decision-making process for our community. 

Reply sincerily, "According to your experience".Thanks for your participation. 

Before starting, define your profile:

What is your Age Category? Put an X beside the category fitting your age:
18-24:     25-34:     35-44:     45-54:        55+:

What is your Education Level:


Indian Origins: 
Indian Nationality: 

Live in India: 
Live abroad:

Current Experience/Studies in India: 
Current Experience/Studies abroad: 

Family Caregivers: 
Professional Caregivers (paramedicals):
NGOs + volunteers: 
Medical Doctor:


According to your experience, what could possibly be the reasons for which Alzheimer’s Disease and others Dementias may be under-diagnosed by Medical Doctors in India?” 

To reply to the 20 questions-Questionnaire: Put an X after the statement you’re agreeing with. 

1° Elders and their families usually don’t come for consultations considering it is Normal Ageing?

2° Elders and their families are not enough reached and sensitized by volunteers working in the eldercare field in India?

3° Elders and their families usually decide not to undergo the diagnosis process?

4° General Practitioners usually consider that it is Normal Aging?

5° General Practitioners usually consider that it is not their medical specialty? 

6° General Practitioners usually consider that more geriatric trainings should be provided to them to better detect the various dementia syndromes?

7° General Practitioners usually consider that they don’t have enough inputs to provide the patient and his family about dementia syndromes and care supports?

8° General Practitioners usually consider that there is no identified official carepath to guide the patient and his family on in India? 

9° General Practitioners usually consider that there is no official geriatric guideline and recommendations in India to better support them in their practice? 

10° General Practitioners usually consider that there is no need for official guidelines and recommendations to follow in India?

11° General Practitioners usually consider that there is no need for Comprehensive Geriatric Assessment in the field of Dementia in elderly people? 

12° General Practitioners usually consider that geriatricians and gerontologists are too scarce resource and then hard to find/reach in India?

13° General Practitioners usually don’t identify enough the different Care Team members involved in the holistic approach in dementia?

14° General Practitioners usually don’t locate the Dementia Care Teams in their respective settings?

15° General Practitioners usually consider that it would be too costly for the patient and his family to undergo a diagnosis? (in term of financial cost, energy and time), 

16° General Practitioners in India usually consider that they have a limited role in long-term care of dementias?

17° General Practitioners usually are not enough informed about the non-pharmacological and psycho-social interventions?

18° General Practitioners usually dismiss the value of the non-pharmacological and psycho-social interventions? 

19° General Practitioners usually consider that they can’t do anything in Dementia Care and don’t go beyond that statement?

20° General Practitioners in India usually consider that ‘nothing can be done’ in Dementia Care and don’t go beyond that statement?

If you participate to the questionnaire, please send your response to Hendi Lingiah's Facebook inbox, or copy and paste and email it at

It is based on your personal experience of the AD carpath in India though you may or may not be a medical doctor and it remains anonymous. The instuctions are provided on the links; your constructive inputs are welcome.

Thank you for taking the time of reading and responding to the questionnaire,

Hendi Lingiah 

Clinical Psychologist

Friday, December 16, 2011

Poem of Norm Mac Namara, patient affected with Early Onset of Alzheimer's Disease and sharing his feelings. (Uk)

Explaining Through Verse

Worry’s and concerns drifting through my mind, 
Dementia, you really are just one of a kind,
My head pulsates with a million thoughts,
Working things out, answers sought,
Frightened look within my eyes,
Open mouthed, silent cries,
Trying to remember where I am,
Trying to remember all I can,
I remember all, when I was a boy,
Clear blue skies, my favourite toy,
But ask me about yesterday,
Recent memories, yet so far away,
Soon my eyes fill with tears,
Of unknown time, missing years,
I sit and ponder about tomorrow,
With heavy heart so full of sorrow,
I only wish a cure would come,
And be salvation, just for some,
But until then, I have this curse,
Trying to explain within this verse,
My daily fight with this awful disease,
I just wish my mind would ease.

Thursday, December 15, 2011

VIDEO: "Experience 12 Minutes In Alzheimer's".

A short video to understand "Just what is a loved one with dementia going through?" in the USA....and in India? is it the same?....very moving at the end...


Experience 12 Minutes In Alzheimer's | Dementia and Alzheimer's Weekly

Wednesday, December 14, 2011

"Saluting Courage", a patient-carer relationship's case from ARDSI Calcutta. India.

‎"Saluting courage" by Nilanjana Maulik, ARDSI Calcutta, India in the Alzheimer's Disease International Newsletter, Dec 2011, vol. 21, n°4.

"Shefali Chaudhuri, the mother, is 93 and a demonstration of courage against all odds. In many ways her life began at 75 when she learned that her daughter had Alzheimer’s.

However, she found a way to convey hope, optimism, reassurance, dignity and respect for her daughter as well as for all of us. I have known her for the past 13 years and seen her do the impossible care – 24 hours a day, 7 days a week, 365 days a year. I have seen her intense concern for her daughter and unstinting generosity with her time."


Saturday, December 10, 2011

VIDEO: A message for newly diagnosed Alzheimer's patients and their families.

Alzheimer's: A message for newly diagnosed patients and their families by Alliance for Aging Research.

Deepak Chopra video about Alzheimer's and music.

Deepak Chopra : A Story of Alzheimer's with Jean Houston

“When I am as others are, a cloud is in front of my mind, but then when I am singing and moving I am in this other world that is so much more real”

Friday, December 9, 2011

The PUNE Declaration on Dementia in India. 16th ARDSI national Conference, INDIA.

The Pune Declaration on “Dementia-

the need for a national strategy

and a Call for Action”-2011


Whereas, the Alzheimer’s and Related Disorders Society of 
India(ARDSI), is a national organization dedicated to the care, 
support and research of dementia in the country and is a full 
member of the Alzheimer’s Disease International (ADI), 
which seeks to improve the quality of life of people with dementia 
and their caregivers and particularly to raise awareness 
about the disease.

We make this Declaration to increase awareness of the 
rapidly increasing prevalence of dementia in India, 
to support the rights of persons with dementia and 
their family members and caregivers, and to call for action.

For the purpose of this Document, dementia is defined 
as a chronic, progressive and terminal disorder involving 
deterioration in multiple areas of cognitive functioning, 
and one often associated with behavioural, psychological 
and functional impairment;

We note the number of persons over the age of 60 years and 
older who suffer from dementia in India is an estimated 3.7 million 
in the year 2010, with 2.1 million women and 1.5 million men 
affected by it.[1]

We observe and stress, the devastating and debilitating 
impact of dementia on the individuals suffering from it, the families 
and caregivers of these individuals and society in general, 
robbing the afflicted persons primarily of their Dignity and Self- Respect, 
of their memory, cognitive functioning, their ability to carry out 
their daily chores and participate in community life, burdening families 
and society with the intense costs, both direct and indirect, 
 of health and social care related to dementia;

We observe with concern that the healthcare needs of persons 
afflicted by dementia are not recognized separately 
from the other mental health care needs of older persons, 
that these are not accorded the priority in government 
planning and programmes, and that India does not have a 
separate national policy on dementia and neither a national 
strategy on the same;

We acknowledge the declaration adopted by the International 
Longevity Centers- Global Alliance (ILC-GA) partners at 
Cape Town in 2010 and the foresight of the governments 
that have implemented the National Plans for 
Alzheimer’s Related Disorders or the National Strategy for Dementia.

We affirm the human rights of all persons, within the context 
of this document, emphasise the human rights of the 
older persons with disabilities. We recall the International 
Covenant on Economic, Social and Cultural Rights which 
recognizes the right to ‘the enjoyment of the highest 
attainable standard of physical and mental health.’ 

We also recall the Convention on the Rights of 
Persons with Disabilities which obligates State Parties
to implement measures to promote and protect the rights of 
persons with disabilities including dementia;

We also note that the Planning Commission as well as the 
revised National Policy on Older Persons of India have taken 
cognizance of the issue of Dementia and have suggested 
concrete measures to address the issues and concerns of 
people affected by dementia;

We invite all the stakeholders of the cause of population ageing
at the state and national levels to support and adopt this 
Pune Declaration on Dementia and strengthen cooperation 
in addressing dementia and its impact.

Now, therefore, the Alzheimer’s and Related Disorders Society of India

Proclaims this Pune Declaration on “Dementia- the need for a 
national strategy of India” to be a call for action from all levels 
of government, and for civil society, academia, communities and 
individuals to promote and protect the rights of persons with 
dementia as well as the rights of their family members and 
caregivers, by: 

1. Engaging in a multidisciplinary dialogue to establish 
a common framework of standards for the prevention, 
diagnosis and treatment of dementia;
Urging the government to develop and implement national 
integrated policies and plans of action dedicated to dementia, 
including a national strategy on dementia, as well as 
comprehensive policies and plans of action on ageing 
which incorporate dementia;

3. Urging increased funding by governmental and non 
governmental sources of research on all aspects of dementia 
and associated caregiving;

4. Requesting and urging pharmaceutical companies to supply 
affordable dementia medications;

5. Urging the government to support the provisions for the training 
of healthcare professionals in geriatrics in general, and in dementia in
particular and also to enhance the dementia screening and 
diagnostic skills;

6. Supporting efforts of governmental and nongovernmental bodies 
to create awareness on healthy ageing, and measures to prevent or 
delay the onset of dementia;

7. Urging the media to enhance qualitative advocacy of the cause of 
population ageing in general, and of dementia, in particular;

8. Supporting the efforts of governmental and nongovernmental 
organizations to reduce the discrimination and isolation of people 
affected by dementia.

9. Providing support, including training and respite care services, 
to informal caregivers of older persons with dementia.

ARDSI National and all State Chapters
Chaitanya Mental Health Care Centre, Pune
International Longevity Centre-India (ILC-I)
27th November 2011

[1] The Dementia India Report 2010 (Prevalence, Impact, Costs and Services for Dementia) of ARDSI.

Alzheimer’s Society India (ARDSI) Greater Mumbai: The Pune Declaration on “Dementia- the need for a ...: Preamble Whereas , the Alzheimer’s and Related Disorders Society of India(ARDSI), is a national organization dedicated to the care, s...