Alzheimer's Disease in India

Hindi website for dementia caregivers in India by Swapna Kishore, Bangalore.

2012-02-12T03:28:00.000-08:00

‎"Hindi website for dementia caregivers in India (40+ pages): an announcement", from Swapna Kishore, Swapna Writes Blog, february 11, 2012.

"This blog entry is to share that I have created a 40+ page Hindi website for caregivers of dementia patients in India.

Below, I explain the scope and purpose of the site and put forth my request to all blog readers."....at : http://swapnawrites.wordpress.com/2012/02/11/hindi-website-for-dementia-caregivers-in-india-40-pages-an-announcement/

Link to the Hindi website: http://dementiahindi.com/

"The Private Health Sector in India : Nature, Trends and a Critique" by Ravi Duggal.

2012-02-09T14:11:00.000-08:00

"The Private Health Sector in India : Nature, Trends and a Critique", Ravi Duggal, Project Supported By: Independent Commission for Health in India (ICHI), New Delhi.

..."While the expansion of the private sector is primarily responsible for high and increasing inequity in access to health care, its internal functioning is riddled with problems and its claim of better efficiency and quality service are yet to be objectively proven.

Besides, malpractice is very common, irrational and unnecessary diagnostic tests and surgeries are rampant, and ethics are by and large jettisoned.

All over the world there is a tendency to move towards more organised national health systems and an increased share of public finance in health care. Almost all developed capitalist and socialist countries have universal health care systems where the public sector's share of the fiscal burden is between 60 to 100 %.

This trend is inevitable in the pursuit of equity and universal coverage. A few countries which have not set up universal systems of health care, such as the USA, where 30 million people do not have reasonable access to health care, continue to have glaring inequities in health care provision despite being economically well-developed."

Link: http://www.cehat.org/go/ResearchAreas/HsfPhsi

Primary Care in the indian Healtcare system today.

2012-02-08T13:29:00.000-08:00

‎"Market moving the preventive and primary way in health care in India", by Dr Rakesh Parashar. Health Care & Hospital Management Consultant; The Health Care Intelligence Team, february 9, 2012.

"Indian health system’s major drift towards the specialized and super-specialized care in last two decades has been a result of an incompetent preventive and primary health delivery system.

The primary care has remained a concept of public health and the business hospitals have found little incentives to incorporate this into the service delivery, which is high end and technology driven.

The growing business of health care in India, which is speeding at about 20 % CAGR, is about to touch $ 120 billion by 2015. However, the improvement in the health status of the country is still doubtful with IMR, MMR, anaemia, malnutrition and life expectancy improving at a slower pace than the industry growth."....

Read more at: http://dendrytes.com/Blog/market-moving-the-preventive-and-primary-way-in-health-care-in-india/

"1298 Senior Citizen's Mumbai Helpline" report

2012-02-07T09:18:00.000-08:00

"1298 Senior Citizen's Helpline" January 2012 report, Mumbai,
downloable at the following link:

On silverinnings's posterous:
http://silverinnings.posterous.com/#!/1298-mumbai-senior-citizens-helpline-report-d

"Wandering & Missing Senior Citizens: Why Does it Happen & What To Do ? ". India.

2012-02-07T03:03:00.000-08:00

Wandering and Missing Senior CIitzens: why does it happen and what to do? Silver Innings Foundation Presentation, 2012.

Case studies from India, tips to reduce wandering and support and ressources in your environment :

pdf downloable at: http://silverinnings.posterous.com/#!/wandering-missing-senior-citizens-why-does-it

The 20th IAGG World Congress of Gerontology and Geriatrics, June 23-27 2013, Seoul, Korea.

2012-02-06T03:20:00.000-08:00

Call for Submitted Symposia Important Dates :

· Period: September 1st 2011 ~ May 31st 2012
· Notification of Acceptance: April 2012
· Notification of Presentation schedule: May 2012
· Final list of accepted proposals: May 2012

WELCOME MESSAGE & Situation in Korea:

The ageing society is now a global challenge faced by not only advanced
countries, but by the entire world. Notably, Korea is experiencing one of
the fastest ageing trends in the world with its aged population ratio
exceeding 11 percent in 2010. We anticipate this ratio will rise to over
14% by 2018, making Korea a truly aged society.The sense of urgency
among people about this development is leading to diverse policy discussions.
In the year 2013, when we plan on holding the 20th IAGG World
Congress of Gerontology and Geriatrics in Seoul, the Korean society will
be at a critical juncture regarding ageing.

The 20th IAGG World Congress of Gerontology and Geriatrics will be hosted
by the Federation of Korean Gerontological Societies, which is an
alliance of the most representative Korean institutions in
Gerontology. With the full support of the Korean government, I am
confident that the Congress will be a successful global academic festivity of
exchanging relevant research findings from all 5 continents and 6 oceanic
regions of the world.The Seoul Congress will make especially
great use of Korea’s advanced information technologies of the
21st century for discussing the various research, implementation,
and policy initiatives necessary for enhancing
the quality of life for the older people.

I look forward to having valuable exchanges on the much talked about issue
of ‘ageing’ with the great minds of the world here in Korea, which is a country
known for its distinct history and tradition.

link : http://www.iagg2013.org/

19th International Conference Of Indian Association of Palliative Care, Kolkata, speakers and details.

2012-02-04T07:35:00.000-08:00

19th International Conference Of Indian Association of Palliative Care,
IAPCCON2012, Kolkata, 10-12 Feb 2012,
Conference Proceedings
ABSTRACT BOOK

Dr Arundhati Chakraborty

Organizing Secretary, IAPCCON 2012, Kolkata

H.O.D. – Radiation Oncology

Apollo Gleneagles Cancer Hospital, Kolkata

IAPC CCEPC (Certificate in essentials of palliative care ) Experience,
Dr. Rajashree KC

Institute of Palliative Medicine (IPM), Calicut

E-mail: drrajisuresh@gmail.com

Palliative care Research: Indian Perspective

Dr Sushma Bhatnagar
Additional Professor of Anesthesia & In-charge Palliative Care
AIIMS, New Delhi
E-mail : Sushmabhatnagar1@gmail.com

Ethical issues in planning research in Palliative Care
Prof. Santosh K Chaturvedi. M.D. FRCPsych
National Institute of Mental Health & Neuroscience, Bangalore
E-mail: skchatur@gmail.com

Update on Children Palliative Care Project, India
Dr. Anil Paleri, Calicut,
and Prof. Maryann A Muckaden, Mumbai
E-mail: anilpaleri@gmail.com

Demographic and Socio-Economic Characteristics of the Elderly in India: Reconstructing Data for Palliative Services
Prof. Suhita Chopra Chatterjee
Dept. of Humanities and Social Sciences, IIT, Kharagpur, INDIA
E-mail: suhitacc@yahoo.co.in

Palliative Care issues in Dementia – Social Death and Beyond
Prof. Prabha S. Chandra
NIMHANS, Bangalore
Email: prabhasch@gmail.com

Abstract Book -19th International Conference of Indian Association of Palliative Care IAPC is now available at Conference Website:
http://www.iapckolkata2012.org/pdf/IAPCCON2012-ABSTRACT-BOOK.pdf

or available on request at: hendi.lingiah@gmail.com

‎"INDIA: National Council for Senior Citizens to be constituted", NEW DELHI, 2012.

2012-02-04T06:01:00.000-08:00

‎"INDIA: National Council for Senior Citizens to be constituted", NEW DELHI, Prime Minister's Office, Press Release, February 1, 2012.

Link: http://www.seniorsworldchronicle.com/2012/02/india-national-council-for-senior.html

DELHITES' NATIONAL INITIATIVE IN PALLIATIVE CARE (DNipCare), India.

2012-02-03T13:12:00.000-08:00

...."In addition to the interactive deliberations on Geriatric and Nursing Care, the subjects of both Cancer – prevention & early detection and efficacy of Palliative Care will be disseminated in detail with the help of audio visual presentations during the campaign."

venue: A-1/182 Safdarjung Enclave, New Delhi on the 5th February 2012.

contact details on the link: http://dnipcare.blogspot.com/2012/02/palliative-care-sensitization-campaign.html

A personal experience of the Caregiver's Role from India.

2012-02-02T04:09:00.000-08:00

“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….

"My involvement in dementia care support: an explanation", by Swapna Kishore on Swapna Writes Blog, January 30, 2012.

"I have been a caregiver for well over a decade. In the beginning I didn’t even know I was caregiving, and then I moved through an overwhelming stage where I had to make major changes and compromises in life, and I have finally reached the caregiving stage where I am now– stable, informed, and at peace with my caregiver role.

In terms of my emotional position, over these last fourteen years I moved from “what is happening” to “why is this happening to me” to “why don’t people understand, I wish I could shake them into understanding” to “people just won’t understand” and “this can’t be happening to me”.

But then things improved, and some years ago, I moved to a phase where I began to think, “no one else should have to go through this”, and then “someone has to do something about it” to “let me talk about it myself” and finally, for these last two years, I am at: “let me do what I can do about it.”

"Currently, my mother is bedridden and fully dependent, and this sets boundaries on my choices and life. My caregiving role occupies bulk of the day when my mother’s attendant is not there or my mother is unwell, but when “all is well”, caregiving is minimal and my day is free for other activities within the overall constraints I operate in (low mobility, low social interactions). I use my available time and energy mainly to support the “cause” of dementia care in my own way.

LINK: http://swapnawrites.wordpress.com/2012/01/30/my-involvement-in-dementia-care-support-an-explanation/

‎

"Forcing caregivers into a one-dimensional care role", by Swapna Kishore on Swapna Writes Blog, January 27, 2012.

....."I don’t think the people who speak like this realize they are being intrusive or insulting; they are so engrossed in their need to see the right thing done that they assume the mantle of representing my mother and consider themselves God-appointed officials responsible for ensuring her wellbeing.

They assume that any activity I do away from my mother detracts from her welfare; it constitutes downright neglect, or at least shows a gap in my love and duty, and therefore they have no qualms about reminding me what I must do."

....."Dementia care is an overwhelming role, and yes, it subsumes many aspects of the caregiver’s life, which often has to be completedly redesigned around it. But once there is a stable care arrangement, caregivers may be able to balance the care with other roles, responsibilities, interests and hobbies and live a more wholesome life. Such comments by outsiders place pressure on caregivers and take away that small sense of getting-away that they can have when they are doing other things. Such comments serve to box in caregivers into a confined space."
......

LINK: http://swapnawrites.wordpress.com/2012/01/27/forcing-caregivers-into-a-one-dimensional-care-role/

Alzheimer's Disease in India :

Thank you 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.

Few Advices from Vijaya's Art, family caregiver in Mumbai to help face Wandering among persons affected with AD.

2012-01-31T07:31:00.000-08:00

“The Indian Caregiver’s Corner” :

Advices from Vijaya's Art (family caregiver,Mumbai) to face Wandering among persons affected with AD:

"Your patient is very likely to wander away if he /she can move without assistance.

This also means that they can get lost even if the area is familiar to them because they cannot remember where they are.

This can happen not only when you are outside, sometimes the patient may open the door and leave the house without anyone’s knowledge. This happens quite often in the initial stages, so it is better to be prepared in advance.

1. When you take the patient out of the house, maybe for a walk or to the doctor or for an outing; always, pin on a small badge with your name, address, phone number on their clothing.
Like you would do it for your little child who goes to nursery school. Just in case, if they do get lost it is easy for them to be returned to you. Be prepared.

2. It is always better to have another person with you when you take your patient out to hold them by the hand.

This helps if you have to stop and do something else when you are outside. A minute’s distraction is sufficient for the patient to wander away or hurt themselves.
Even a child of 10 years can help you in this, or you could hire a maid for such tasks. Be sure that the person who is watching your patient talks kindly to them.

3. Inform the society watchman/security staff and explain to them that your patient is not aware of his surroundings so if they see this person leaving alone, that they should stop them and bring them back home gently.

4. Lock the house from the inside with a lock and keep the key on your person – don’t leave it lying around. It can be tiring to open the lock each time you have to open the door. So if you have high traffic in your home of persons coming and going out the front door, use the next option.

5. Install sensors on the doors that can be used to exit the house. This is a magnetic sensor and available quite cheaply and easy to install. It will make a very audible sound if the door is opened without turning it off when it is activated."

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.

Asia: "China Eyes Pension Fund Boost for Stock Market"

2012-01-31T06:03:00.000-08:00

Exclusive: China Eyes Pension Fund Boost for Stock Market, by Benjamin Kang Lim and Don Durfee, Reuters, January 19, 2012, China.

"China's local governments could plough up to $57 billion into the domestic stock market under a proposal, which sources familiar with the matter said was with the cabinet, to allow them to allocate some of their pension funds into shares.

If approved by the State Council, the move would be a welcome boost for the country's stock markets. The Shanghai exchange .SSEC has lost a quarter of its value in the past 9 months and is trading 62 percent below its 2007 peak.

China's pension funds - mostly managed at the local level - have struggled to retain the value of their holdings as they can only put workers' savings in bank accounts and government bonds. That often means negative returns when adjusted for inflation.

The proposal could see 10-20 percent of provincial and large city pension fund assets gradually funneled into the stock market, said one of the sources, equivalent to 180-360 billion yuan ($29-$57 billion), based on an official's estimate of pension funds held at the local level."

Alzheimer's in India : a hidden problem ?

2012-01-30T05:41:00.000-08:00

The Week' 15th Jan 2012 issue - Health Supplement . Dr.Nori Graham Ex Chairperson ADI (Alzheimer's Disease International) talks : " Alzheimer's in India is a Hidden Problem ".

Double click on the photo to enlarge the image and read the article.

Asia: Aged Care in China today.

2012-01-27T12:30:00.000-08:00

The Official Blog of IAHSA – The Global Ageing Network

Global Demographics: Aged Care in China

27 Jan 2012 in BRIC, Caregiving | Tags: ageing, demographics, Trends | by Priscilla Novak

Industrializing nations face a true challenge due to the global shift in ageing demographics. China shares this reality, and is predicted to have 25% of its population be aged 65 by 2050. Naturally, this predicted change creates concerns over who will care for the elderly, how care will be financed, and how medical and social care costs will be managed.

China’s rapid economic growth since the 1980s has been accompanied by a sharp decrease in fertility. In comparison with European countries that saw declining population over 50 – 100 years, China’s dramatic shift has occurred in a time span of 30 years.

The famous “1 child policy” had the unplanned effect of creating today’s 4-2-1 families. People in their 20s and 30s have two parents and four grandparents. Because of family norms of filial support, these single children will be called upon to provide support to both of their parents, and they frequently will not have siblings or extended family that will able to assist with care tasks.

The need for proper care of the elderly is a tremendous opportunity for organizations that are looking to break into the Chinese market. While there are already many firms catering to the very wealthy, middle class and poor Chinese continue to face care that is low quality or in some cases abusive.

The Chinese government has responded to the need by working across ministries to prioritise aged care issues and develop a safety net to assist elders when children are no longer able to care for them.

Is your organization working in China? We would love to hear from you. Drop us a line at iahsa@leadingage.org and let us know what care models you follow or what you perceive as quality priorities.

link: http://iahsa.wordpress.com/2012/01/27/global-demographics-aged-care-in-china/

ROLE OF THE GPs and primary health care team in dementia care (UK).

2012-01-27T07:46:00.000-08:00

"GPs and primary health care teams are often the first port of call for people worried about their memory, and are a gateway to early diagnosis and interventions. Follow the 10 Steps below to improve the recognition, diagnosis management of dementia".

Read more about the ROLE OF THE GPs and primary health care team in dementia care (UK) at:

http://www.southwestdementiapartnership.org.uk/primarycaretoolkit/part3/10-steps.php

‎"Diagnosing Dementia Guidance and Standards" (Uk)

2012-01-27T07:41:00.000-08:00

‎"Diagnosing Dementia Guidance and Standards" (Uk);
all Pdf available on request at hendi.lingiah@gmail.com or also at the following link:

http://www.southwestdementiapartnership.org.uk/2012/01/diagnosing-dementia-guidance-and-standards/?utm_source=South+West+dementia+community&utm_campaign=011c2d291a-ebulletin-january-2012&utm_medium=email

Dr V.S. Natarajan, geriatrician and chairman of the Senior Citizens Bureau, India.

2012-01-26T04:54:00.001-08:00

Introduction of Dr V.S. Natarajan, Geriatrician and Chairman of the Senior Citizens Bureau since 2001.

INTRODUCTION

The Senior Citizens Bureau is a free guidance and information center for members of Society of all age groups which is run by Senior Citizens.

The Bureau was founded under the original name of Citizens Advice Bureau in the year 1996 by the Probus Clubs at Chennai under the able leadership of General Aban Naidu, PVSM, AVSM, a world war veteran and social activist.

Bureau renamed as a Senior Citizens Bureau was regisgtered under Societies Registration Act in the year 2002 and is headed by its Chairman Dr.V.S. Natarajan , M.D., FRCP, D.Sc(Hon), a renowned Geriatric Physician.
.............

READ MORE AT : Dr V S Natarajan gets Padma Sri Award--congrats

Some figures about India and China Healthcare policy toward poor people.

2012-01-24T06:07:00.000-08:00

‎"Healthcare costs skyrocketing in India", Times of Assam, by Correspondent, October 13, 2011.

........
"Mentionable that the last World Health Statistics 2011 report by World Health Organization (WHO) had showed India lacking behind in the health care sector.

In fact it has showed that China has done much better and outperformed India in improving general health conditions of its citizens during the past decade.

The Chinese, according to the WHO report has less infectious disease cases, has a wider coverage of various medical services and is seeing a longer life expectancy than India.

Another WHO report on health systems financing showcased the medical insurance reforms done by China as an example for developing countries.

China had initiated a scheme in 2003 to increase the proportion of its population covered by formal insurance from 15 percent in 2003 to 90 percent by 2011. The scheme has greatly improved medical financing in rural areas."
........

"India has about 42 percent of poor people living on less than 1 US dollar per day while China has only about 16 percent of such people.

The reports showing the poor fare of India in the health space is alarming and concerning. It is time Indian Government and policy makers makes some serious reforms in the health space."

Alzheimer's Disease in India readership issues raised on the Blog.

2012-01-23T10:41:00.000-08:00

Dear friends and members,

I could make a summary of the issues raised on the Blog "Alzheimer's Disease in India" on blogspot.com by its readership.

After 6 months of activity of this Facebook group, the following issues have been discussed:

ISSUES MENTIONNED ON THE BLOG AND DISCUSSED ON THIS FACEBOOK GROUP. (Aug. 2011- Jan. 2012)

- Care Services by locations in India: 35%
(Homes, day care centers, support groups...),

- AD prevalence and stigma/perception in India: 24%
(Its existence, statistics, extend...),

- Gerontology and Geriatric Courses and Societies: 11%
(doctors, group work, courses, regulatory bodies…),

- Infos on AD, the diagnosis and its disorders: 8%
(role of diagnosis, procedure, confusion…),

- Different needs and care approaches: 6,35%
(music, physical activities, devices…),

- Research on AD in India: 6,35%
(research, updates…),

- Policy on Dementia in India: 6,35%
(rights, national & local strategy…),

- Trained attendants in India: 2%
(locations, training ceritificate, regulatory body…).

What conclusion can you draw about these figures? Share yours and let's discuss together.

Nightingale Medical Center in Bangalore awarded for its research in AD psychosocial intervention.

2012-01-20T03:35:00.000-08:00

Nightingales Centre for Ageing & Alzheimer’s is the Winner of the prestigious Award for Psychosocial research of Alzheimer’s Disease International (ADI) and Foundation Mederic Alzheimer in the category:

most promising evidence – based psychosocial intervention.

This Award will be formally presented during the ADI conference in London on 9th March 2012.Indeed, it is a very rare recognition for their committed services for the cause of Alzheimer’s & Ageing.

KNOW MORE ABOUT THEM AT:
http://nightingaleseldercare.com/programs/nca/

Alzheimer's Disease in India Cause.

2012-01-19T09:48:00.000-08:00

ABOUT ALZHEIMER'S DISEASE IN INDIA CAUSE.

The aim of the cause : through the Blog, share news on Alzheimer’s Disease in India.

To raise awareness among the population in and from India, inform people with the resources they may have in their country and on actions taken by organizations there.

Also, it encourages families and caregivers to cope with the disease; help researchers in collecting data and develop views on the Public Health Policy toward the affected elderly population in India.

You can now directly SUPPORT "Alzheimer's Disease in India" by making a SECURE DONATION via PayPal through the Donate button on the Blog and at:

http://alzheimerdiseaseinindia.blogspot.com/2011/10/alzheimers-disease-in-india-support-us.html

1. alzheimerdiseaseinindia@blogspot.com

2. raise awareness on the disease

3. inform families and caregivers

4. network with NGOs

DONATIONS THROUGH THE BLOG "ALZHEIMER'S DISEASE IN INDIA" VIA our PAYPAL BUTTON WILL GO DIRECTLY AND ONLY TO ALZHEIMER'S DISEASE IN INDIA.

Other Donations Go To:

AMERICAN ASSOCIATION OF PHYSICIANS FROM INDIA CHARITABLE FOUNDATION
A 501(c)(3) nonprofit (EIN: 86-0586053

LINK:
http://www.causes.com/causes/613850-alzheimer-s-disease-in-india

VIDEO Dementia & Alzheimer's SIF presentation in English & Marathi 2011.

2012-01-19T05:48:00.000-08:00

The roots of Elder Abuse or Caregiver's Isolation in India?

2012-01-16T06:33:00.000-08:00

‎"An instance of caregiver isolation", by Swapna Kishore on Swapna Writes Blog, January 12, 2012.

"We often hear of how we must love the patient, and if the patient is a parent, how we must love the parent as the parent loved us, and how we must do things for the parent as the parent did things for us. Yet there are assumptions here that no one questions, and situations where care is challenging because of problems caregivers cannot talk about."
......
"Now consider the situation where this abusive or drunkard spouse or parent gets dementia.It suddenly becomes the duty of the abused person to look after the person with dementia. A parent is to be looked after because he “brought you into the world” and “loved you”, a spouse because “after all, a spouse is all you have” and “pati dharam.”
.....
"First, people ignored their problems saying it was a “family matter.” But later, when dementia strikes, people around abused persons often instruct them on what “families” are all about. “Learn to forgive,” someone says. “Do your karma gracefully,”, says another person others. “Be positive,” says a third. Easy words. The abused persons, thrust willy-nilly into caregiving, lack forums to express frustration and find peace because talk of the past bitterness is taboo. They are supposed to have forgiven/ forgotten/ become positive."

http://swapnawrites.wordpress.com/2012/01/12/an-instance-of-caregiver-isolation/

Some figures about Elderly people in India. HelpAge India.

2012-01-16T06:28:00.001-08:00

Is India a dutiful or compassion society when it comes about Dementia Caregiving?

2012-01-16T06:24:00.000-08:00

‎"Of Mom, and a story about dutiful worlds", by Swapna Kishore on Swapna Writes Blog, January 13, 2012.
......
"We suddenly realize that even sabjiwalas have parents, and so does the bai who cleans the vessels and the tuition teacher who is helping the grandchildren prepare for the CA exam.

Even Prime Ministers, policemen, judges and telephone linesmen have elderly relatives or spouses. And we don’t want them to be so greedy as to continue a career when they could be at home holding the hands of an ailing spouse.

We want our country led by people with better values, don’t we? Only, which house will we be living in? Even building contractors and architects have parents.

There’s a limit to how much the world can function just based on work done by orphans, you know. Or perhaps we should accept that duty comes in multiple shades, and our parents are not the only ones we have a duty towards. We have a duty towards many other things, including our chosen professions."

READ MORE AT: http://swapnawrites.wordpress.com/2012/01/13/of-mom-and-a-story-about-dutiful-worlds/

Indian Senior Citizens Survey 2012.

2012-01-16T06:21:00.000-08:00

Senior Citizens Opinion Survey : This is a brief survey to collect the opinion from citizens of India above 55 years of age and older regarding health care and other essential needs.

This survey is to be completed by someone who falls in that age category.

Please do take survey : https://docs.google.com/spreadsheet/viewform?

Need for documented datas on dementia care professionals available in India.

2012-01-16T06:19:00.000-08:00

Dear friends and members,

in order to collect more infos on Alzheimer's Care in India and display them towards the authorities, reviews and potential donors, I would need documented figures regarding the numbers of neurologists, geriatricians, memory clinics, tests done in India and how people get access to these services. Would you know how I can get that?

Send inputs to hendi.lingiah@gmail.com

Thanks ;-)

Compassion Fatigue in Caregiving ? What's this ?!

2012-01-16T06:18:00.000-08:00

‎"Compassion Fatigue: To Stop Caregiving Stress, Stop Caregiving" : "Yet this is exactly the solution to compassion fatigue: stop caregiving – not forever, just for a day. Preferably a whole day."

By Paula Spencer Scott, Caring.com senior editor

Last updated: September 17, 2009

......
"My mom didn't know she had compassion fatigue, since nobody named for her this extreme caregiving stress back when she was looking after her mother, who was in her 90s and had Alzheimer's disease.

By the end, Mom was dutifully visiting the nursing home day after day for hours, where she'd not only quietly tend my grandmother but also became such a familiar face that she also felt she had to stop and greet half the other residents, visit Gram's barely-verbal roommate, bring treats to the nursing staff, and so on."......

READ MORE AT: http://www.caring.com/blogs/caring-currents/compassion-fatigue

Are "dementia patients" in India the Hidden elders ?

2012-01-16T06:12:00.000-08:00

"Active, visible elders, and inactive, tucked away, hidden elders", by Swapna Kishore on Swapna Writes Blog, January 16, 2012.

"I can imagine how uncomfortable it is for people who are growing older to hear about or see their peers who are facing problems.

Probably people who are ageing well and remaining active and hoping to continue to do so want no reminders that their peers may not be faring that well along that age curve.

They may, therefore, be tempted to dismiss off people facing problems as people who are not determined enough, positive enough, and they may not want to connect with the less-well people or even see them unless they are “success stories” who have overcome a problem."

READ MORE AT: http://swapnawrites.wordpress.com/2012/01/16/active-visible-elders-and-inactive-tucked-away-hidden-elders/

"A dementia patient in the family....". Here's a personal account on how to deal with it." Article from Mumbai Mirror "Down Memory Lane"..

2012-01-16T06:01:00.000-08:00

‎"Down memory lane. A dementia patient in the family can be a challenge for the caregivers. Here's a personal account on how to deal with it." Neil Pate, Monday, January 16, 2012.

....."Two years ago, when Daddy forgot his wallet or mixed up the characters of his favourite TV serial Saat Phere - Saloni ka safar and Balika Vadhu, we laughed at his absent-mindedness. Over time, his interest in TV soaps dwindled.

It became a matter of concern, when he started getting more confused, forgot people, names and telephone numbers, and became increasingly irritable.

One morning, he asked his son, who works as a consulting neurologist at P D Hinduja Hospital, “Where do you go every day? Do you work in some office?” It took a formal cognitive test to confirm that Daddy, a retired district judge who loved reading Mills & Boons and collecting watches, was in the second stage of dementia – losing track of time, literally.".....

So what do you do when your parent or spouse is diagnosed with dementia, and you know you're fighting a losing battle? “Accept the fact that the person is ill,” says Dr Roop, who takes care of many Alzheimer patients but never thought dementia would come so close to home.

And :
What is dementia?
Watch out for these symptoms,
Help at hand,
For the caregiver,
Get outside help,
Support groups, in Mumbai.

READ THE FULL ARTICLE AT: http://www.mumbaimirror.com/article/9/201201162012011602035815632083fdf/Down-memory-lane.html

DELHITES' National Initiative in Palliative Care (DNip Care), India.

2012-01-10T13:12:00.000-08:00

Care for Patients suffering from Cancer and other terminal illnesses :

"The mission under DNipCare aims at development of sustainable cost effective system of Palliative Care with active community participation for patients suffering from long term, bed-ridden, incurable, life limiting illnesses.

Our strategy is to encourage local people to address the social needs of patients and their families, train the community volunteers to offer emotional support, facilitate the development of locally sustainable home care programs and to establish a network of committed volunteers, nurses and doctors with expertise in palliative care to support such initiatives.

With the active support of our esteemed volunteers and well wishers, presently we are able to provide even monthly food ration support to the identified poorest of the poor patients in addition to the psycho-social and medical home care. Rehabilitation of the patients and their hapless families, wherever required, sensitization of the masses through locally available socio-cultural organizations on the efficacy of Palliative Care are our main plank."

http://dnipcare.blogspot.com/

"Understanding dementia home care in India and try learning how to face disorders"

2012-01-10T12:39:00.000-08:00

“The Indian Caregiver’s Corner” :

‎"Understanding dementia home care in India" by Swapna Kishore on Swapna Writes Blog, January 9, 2012.
.....
"Being both a caregiver and a volunteer, I am often able to connect with the situation and challenges of home care, because even if I have not faced some of the problems others talk about (and boy, there is a wide range of problems out there), I can extend my experience to imagine it.

This volunteer’s comment made me realize that perhaps I should do something about this gap of understanding that non-caregiver volunteers experience. I also realized that when some volunteers ended up sounding preachy, insensitive or critical, they may just be naïve and ignorant."
.....
"I wrote a short note to describe what dementia home care involves (my original draft was five times this length, but I reduced it to keep it at a readable length). I think anyone in contact with home caregivers may find it useful to get some idea of what caregivers are experiencing." (in India)

http://swapnawrites.wordpress.com/2012/01/09/understanding-dementia-home-care-in-india/

‎"The caregiver learning curve", by Swapna Kishore on Swapna Writes Blog, January 10, 2012.

"When I started changing my way of talking to my mother, it did not happen overnight. Lapses were frequent in the beginning, then reduced. I could manage the new way of communicating easily for some types of situations but not for others.

I required constant mental reminders and lip-biting and nail-pressing-into-palms, heaps of deep breaths whenever my old habit would surface and I would determinedly set it aside and behave in a new way. I often caught myself mid-sentence and corrected my way of talking.

It was exhausting work, but as the payoff started getting visible (better communication, fewer “episodes”), my mistakes reduced. Hey, I would not even call them mistakes; they were part of my learning/ transforming curve. They were unfortunate incidents, but I emerged, as did my mother and I will neither deny and hide them, nor feel guilty about them. I did my best in my own way."

http://swapnawrites.wordpress.com/2012/01/10/the-caregiver-learning-curve/

"About wandering in Dementia Patients", from Swapna Kishore of Dementia Care Notes and Swapna Writes Blog : "What does one do when one hears of an elder who has gone missing, most probably because of the confusion caused by dementia? At what threshold does concern become significant enough to act, and how do different people respond?"

http://swapnawrites.wordpress.com/2012/01/05/concern-and-support-dementia-and-wandering/

Alzheimer's Disease in India :

"Trained attendants and respite care for dementia: testimony from India"

2012-01-10T12:26:00.000-08:00

“The Indian Caregiver’s Corner” :

‎"Trained attendants and respite care for dementia: Observations from India", from Swapna Kishore, of Dementia Care Notes and Swapna Writes Blog:

"Not a single person has ever told me: "We got, on our first attempt, an excellent, hygienic, reliable caregiver who is honest and hardworking, and takes care of the patient without supervision and frees us of all worry and never takes leave. Our patient is always happy with this attendant, and the attendant is always cheerful and happy, too.""

http://swapnawrites.wordpress.com/2012/01/06/trained-attendants-and-respite-care-for-dementia-observations-from-india/

‎"Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India", from Swapna Kishore of Dementia Care Notes and Swapna Writes Blog:

"For those trying to help caregivers, the pathetic state of available support is disheartening." ....

"We need help now. We need something to start providing relief soon, in a widespread way. We cannot depend solely on the actions of existing dementia care volunteers, already a small and over-stretched community. In addition to increasing the community of persons committed to help, we must get others interested in creating appropriate facilities.".....

"Suppose someone works out a good model for an attendant-supplying agency, one that is commercially viable, and makes it available; surely there will be investors and entrepreneurs who will come in? Then it is a matter of ensuring that the work they do is good quality"....

READ MORE AT: http://swapnawrites.wordpress.com/2012/01/07/trained-attendants-and-respite-care-for-dementia-sharing-suggestions-for-volunteers-from-india/

Alzheimer's Disease in India :

"Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India."

2012-01-07T07:06:00.000-08:00

"For those trying to help caregivers, the pathetic state of available support is disheartening."

"Some volunteers begin considering setting up agencies or respite care homes themselves. They redirect energy, time, and resources into trying to set up whatever is needed to train a batch of attendants, or start planning a specialized dementia care home.

Often, many of these persons realize midway this is just so much work, and doing this means they cannot do anything else. They feel they are spending all their energy for something that may benefit at most 10 or 20 families, and wonder whether this is more important than what they were doing earlier.

Also, being committed to a cause and passionate about it does not naturally equip one to run a full-fledged establishment for fulltime care.

These volunteers/ organizations then give up, or start something that fizzles out, having lost valuable time and energy (and sometimes goodwill) along the way."
.....
"Here is what I think:

Ideally, there would be this huge nodal body that sets up gazillions of agencies that supply excellent trained attendants at very affordable prices, and also creates heaps of day cares and respite cares so that no dementia patient remains unsupported.

But that does not seem feasible, at least in the short run

We need help now. We need something to start providing relief soon, in a widespread way. We cannot depend solely on the actions of existing dementia care volunteers, already a small and over-stretched community. In addition to increasing the community of persons committed to help, we must get others interested in creating appropriate facilities."

.....

" Suppose someone works out a good model for an attendant-supplying agency, one that is commercially viable, and makes it available; surely there will be investors and entrepreneurs who will come in? Then it is a matter of ensuring that the work they do is good quality…"

BOOK ON “DEMENTIA” IN TAMIL.

2012-01-06T06:14:00.000-08:00

DR.V.S.NATARAJAN’S BOOK ON “DEMENTIA” IN TAMIL IS AVAILABLE FOR SALE.

Book Pages : 136. Book price Rs.70/-.
This is a Tamil Encylopaedia to know all about memory and memory related disorders.

Contact address: Dr.V.S.Natarajan, Adiparasakthi Clinic, New No.50 (18,A), Flowers Road, Kilpauk, Chennai – 600 010.
Ph: 044 -26412030 (OR) DR.V.S.Natarajan, No.16, 17th Street, “Q” Block, Anna Nagar, Chennai – 600 040. Ph: 044 – 26267282.

Dr VS Natarajan: dr_v_s_natarajan@yahoo.com .

Thanks to Padmanabha Vyasamoorthy for info.

"Trained attendants and respite care for dementia: Observations from India."

2012-01-06T06:01:00.000-08:00

"As per the Dementia India Report 2010, there are an estimated 37 lakh (3.7 million) dementia patients in India and 6 respite care facilities (facilities for fulltime stay, short term or long term) that are specialized for dementia patients.
I’ve summarized some data alongside, and you can see the contact information for all six at my website’s resource page here: Dementia Caregiver Resources across India. Add to it the day care facilities, the optimistic estimate of capacity oriented for care suitable for dementia patients is 400.

Four hundred, across India, a nation where the number of estimated patients is 3.7 million.

A massive gap, indeed........."

...............

"not a single person has ever told me:

We got, on our first attempt, an excellent, hygienic, reliable caregiver who is honest and hardworking, and takes care of the patient without supervision and frees us of all worry and never takes leave. Our patient is always happy with this attendant, and the attendant is always cheerful and happy, too."

............

"When I start telling the person needing attendants that this process is not so simple, many do not believe me, and some think that I’m just someone who doesn’t know, or am discouraging them because I do not provide trained attendants. Persons who contact me sometimes hope/ dream that they can, just with a phone call, reach an agency that supplies such attendants as soon as you call them.

Some go a step further and assume that they will not need to take even a day off, and this new attendant will report for work one morning and the family can leave the patient under the care of this attendant (who is supposedly trained) and go off for work an hour later, free of worry about this aspect of their complicated busy lives.

Perhaps."

"Introduction to dementia (Alzheimer's and Caregiver's Role): material for awareness program in India.

2012-01-06T05:48:00.000-08:00

"This presentation is from http://dementia-care-notes.in

The presentation provides an overview of dementia, including (1) basic facts about dementia and its prevalence (2) how dementia affects patients and people around them (3) how we can help reduce the patient distress and caregiver burden.

This presentation was prepared for use by persons conducting dementia awareness programs in India.

It can also be used by laypersons to get an initial understanding of dementia. While it contains information useful for anyone interested, it includes data and examples from India. This material is not a substitute for medical advice."

Slideshow "Dementia and wandering: suggestions for family caregivers in India."

2012-01-06T05:37:00.000-08:00

"Most persons with dementia wander, and this can traumatize the patient and the family. Some patients are not located for days, and some get seriously injured, even die.

This video discusses ways in which families can try to understand what needs or restlessness makes patients wander, how to reduce wandering, and also how to be prepared to get the patients home safe and fast in case they do wander.

While the video may be useful for any caregiving situation, it is designed keeping family caregivers in India in mind."

Bathroom Remodeling for Every Budget for Seniors.

2012-01-02T12:30:00.000-08:00

Home for Life: Bathroom Remodeling for Every Budget for Seniors: If you have a senior you care for who’s still using a bathroom designed for the person who never ages, it’s time to remodel for safety so th...

Arogyakeralam palliative care project in Kerala, India.

2012-01-01T12:40:00.000-08:00

Ramachandra Panicker (MD) on Arogyakeralam palliative care project in Kerala:

"Arogyakeralam palliative care project is the initiative of the Government of kerala to offer care and management of various problems faced by terminally ill and bed-ridden patients. We are training ANM's (Auxillary Nursing and Midwifery) selected by various LSGI's (Local Self Government Institutions) and community volunteers in palliative care.

Our programme is now in place in 48 grama panchayats. Regular Home care to chronically ill and bed ridden patients were established in these panchayats. We are also planning to start 6 weeks BCCPM (6 weeks training for doctors in palliative medicine) course for doctors by in 2012. The project is monitored at Institute of Palliative medicine Kozhikode (State of Kerala). We have at present about 200 dementia patients in our registry."

- ANM: Auxillary Nursing and Midwifery : 1.5 yrs training and were registered with nursing council. These nurses were given 3 months BCCPAN (Basic Certificate Course in Palliative Auxillaty Nursing).
- LSGI's: Local Self Government Institutions-usually represents 20000 to 40000 populations.
- BCCPM: 6 weeks training for doctors in palliative medicine. (Basic Certificate Course in Pain and Palliative Medicine)". Successful completion of the course is mandatory to apply for Morphin licence.

The Hospital experience in India for persons suffering from Alzheimer's Disease and Related Disorders and their Family.

2012-01-01T12:08:00.000-08:00

"Late-stage care, heartbreaks and tender moments, hospitals, dilemmas, decisions: a daughter narrates"

ON DECEMBER 27TH, 2011

Vijaya is a Mumbai-based qualified accountant, who set aside her career for some years to care for her father, a dementia patient. In this interview, Vijaya describes the final months of her father’s life, and the heart-break and decisions and dilemmas involved.

......

"Your father was admitted to the hospital for some problems. Could you describe the problems, his stay, and the overall experience?

"One common problem we faced was that the nursing staff had no idea how to deal with someone who could not understand and would not co-operate, but even then they would not allow caregivers to be present alongside when treatment had to be given to the patient preferring instead to get wardboys to hold the patient down.

He would try to fight off nurses trying to put in a canula or draw blood for tests. He would get agitated even with a blood pressure cuff being slipped on his arm unless one of us held his hand and told him what was going to be done and that it was okay because it was treatment and we were watching.

We usually had to request the doctor to give instructions to the nurses to be allowed to be with father when injections were administered, when a Foley’s catheter was inserted, or a bladder wash was done, when blood pressure readings were taken, or nebulisation was given.

Such instructions had to be repeated to the new nurses whenever their shift changed. Also, whenever a new doctor was given charge of my father’s care, we would have to convince this new doctor to instruct the nurses to allow us to be with father. This whole process would have to be repeated all the time."
.......
" My general observation was that regardless of how grand (read expensive) or not the hospital, the staff in charge of patient hygiene (ayah/maushi, ward boys) uniformly displayed apathetic behaviour. They were not sensitised to patient’s comforts. They did as little as they could get away with, and they did it as cursorily as possible and only did the work after being asked to repeatedly."
......
" One point that I wish to emphasise here is that in all our experiences with doctors over the years we were able to ‘discuss’ on equal footing (i.e. without being cursorily brushed off as laypersons) only when we had done our homework (with knowledge garnered from the Internet) that showed we could understand medical issues and treatments.

When we were ignorant of some issues or exhibited any hesitation, doctors uniformly gave us patronising responses that were not sufficient to understand the treatment being given. They did not actively help us to understand enough to make a decision suitable for our situation."

READ the Full interview at : http://dementia-care-notes.in/vijaya-interview/

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

2011-12-27T17:35:00.000-08:00

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)

2011-12-27T17:07:00.000-08:00

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."

READ FULL REPORT AT: http://mospi.nic.in/Mospi_New/upload/elderly_in_india.pdf

Or request by email at : hendi.lingiah@gmail.com

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

2011-12-27T09:02:00.000-08:00

About KNOWLEDGE BASE on AGEING POPULATION in INDIA :
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 ."

READ FULL REPORT AT: http://mospi.nic.in/Mospi_New/upload/elderly_in_india.pdf

Or request by email at : hendi.lingiah@gmail.com

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

2011-12-27T08:47:00.001-08:00

"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."
....

READ FULL REPORT AT: http://mospi.nic.in/Mospi_New/upload/elderly_in_india.pdf

Or request by email at : hendi.lingiah@gmail.com

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

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

2011-12-20T05:22:00.000-08:00

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” :

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 :

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

2011-12-18T11:22:00.000-08:00

"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.

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

2011-12-17T06:17:00.000-08:00

"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:

Men:

Women:

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:

Students:

Writer:

Start:

“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 hendi.lingiah@gmail.com

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

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

2011-12-16T07:30:00.000-08:00

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.

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

2011-12-15T04:24:00.000-08:00

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...

VIDEO at:

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

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

2011-12-14T05:59:00.000-08:00

‎"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."

READ MORE AT:
http://www.alz.co.uk/adi/pdf/gp201112.pdf

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

2011-12-10T05:05:00.000-08:00

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

Deepak Chopra video about Alzheimer's and music.

2011-12-10T04:21:00.000-08:00

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”

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

2011-12-09T06:11:00.000-08:00

The Pune Declaration on “Dementia-

the need for a national strategy

and a Call for Action”-2011

Preamble

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)

27^th November 2011

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

LINK :

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...

Indian Red Cross Society Hyderabad Diagnostic Center.

2011-12-09T05:45:00.001-08:00

Under the agesis of Indian Red Cross Society Hyderabad District Branch Yogalaya Diagnostic Centre is being established to provide the basic Diagnostic Services to the people at an affordable rates.

The services rendered at this centre along with the rates is provided for your information in the attachment in PdF (on request).

Everyone is welcome to avail the services provided at this center.

GERIATRIC CARE for Senior Citizens above 65yrs old.

Phone: 040-40120077

email: chairmanircshyd@gmail.com

Address: 1-10-134, Street 9, Ashoknagar, Hyderabad - 500020

Dr. Rao V.B.J. Chelikani

President

International Foundation for Human Development (IFHD)

12-13-705/10/AB, Balaji Residency-106,
Gokulnagar, Tarnaka, Hyderabad-500017
Andhra Pradesh, INDIA.
Tel: 91.040. 6521 4993, 6450 4993

E-mail: raovbj@yahoo.com

Another very interesting group on LinkedIn: "INDIA Health Progress".

2011-12-09T05:36:00.001-08:00

"India Health Progress is a first-of-its kind initiative to provide a health policy platform for various partners who work in unison to achieve a common goal -- access to healthcare.

IHP’s advisory board involves various groups --- public as well as private --- to raise awareness levels among all concerned.

Despite enormous growth of the Indian economy, considerable improvement in a number of health indicators such as infant mortality and life expectancy, universal access to healthcare still remains a distant reality. According to the Economic Survey 2009-10, only 13% of the rural population has access to a primary healthcare centre, only 33% have access to a sub-centre, barely 9.6% to a hospital and just 28.3% to a dispensary or clinic.

According to a recent report ("Innovative Solutions to Improving Health in India"), access to healthcare remains problematic in parts of India. Forty percent of the country’s primary healthcare centres are understaffed with many of them lacking the basic infrastructure. The report states that nearly 10 lakh Indians die every year due to inadequate healthcare facilities and lack of access.

A multi-stakeholder action plan, including local and international partners, is needed to work towards reducing the disease burden and strengthen access to healthcare in India."

Sensitization Workshop on "Elder Abuse", December 2011,Mumbai.

2011-12-07T03:34:00.000-08:00

Wednesday, 14 December 2011 from 13:30 until 16:30.

Venue : R.N. 119, S.V.T. College of Home Science, Juhu SNDT Campus, Juhu Road,Mumbai- 4000049

Description

Another Community outreach program has been organised by Department of Human Development. SVT College , SNDT University , Juhu in collaboration with Silver Inning Foundation.

This programme is organised by Dept. of Human Development (SVT College , SNDT University) in association with by Silver Inning Foundation ;INPEA ; Development, Welfare & Research Foundation (DWRF) ; 'Little Things Matter Initiatives' (LTMI) ; ARDSI Greater Mumbai ; '1298' Senior Citizens Helpline & iVolunteers .

Program details are as follows:
Program: Sensitization Workshop on "Elder Abuse" (Case Study and Interactive)

Date: Wed 14th December 2011, 1.30 to 4.30 pm

Invited Speaker: Dr. Mala Kapur Shankardass (Renowned Elder Abuse speaker, Sociologist, Gerontologist, Health & Development Social Scientist , Associate Professor Dept. of Sociology, Maitreyi College, Delhi Univ. South Campus ,CHAIRPERSON: Development, Welfare & Research Foundation (DWRF), a voluntary organization concerned with 'Little Things Matter Initiatives' (LTMI) to improve quality of life of people as they age. , CHAIR for Asia: International Network for Prevention of Elder Abuse (INPEA) , FELLOW: World Demographic Association.

Venue: R.N. 119, S.V.T. College of Home Science, Juhu SNDT Campus, Juhu Road,Mumbai- 4000049

Target Audience: College Students, Psychologist , Social Workers , Youths , NGO's , Legal students , Media Students , Medical Students and other interested individuals are also welcome

Compulsory Registration: For Registration pls contact: Silver Innings 9987104233 ( Mon to Sat - 10am to 6pm) or silverinnings@gmail.com (Pls hurry limited seats).

"India to be capital of Alzheimer's and Dementia by 2030", from DNA Sunday, Pune 2011.

2011-12-05T03:06:00.001-08:00

"Experts discuss ways to raise awareness about ailments at two-day national conference" the 16th ARDSI National Conference. Article By Sharadchandra Gokhale from DNA Sunday, PUNE November 27th, 2011.

Link : http://www.karmayog.org/redir/strred.asp?docId=1&msgid=5253

or send your request for the Pdf at hendi.lingiah@gmail.com

Income Tax deduction in INDIA for specified diseases as Dementias, from Alzheimer's Info blog for Caregivers.

2011-12-05T02:50:00.001-08:00

A deduction is allowed under Section 80 DDB of the Income Tax Act for Treatment of Specified diseases. The following diseases are covered :

· Neurological Diseases (where the disability level has been certified as 40% or more)

- Dementia
- Dystonia Musculorum Deformans
- Motor Neuron Disease
- Ataxia
- Chorea
- Hemiballismus
- Aphasia
- Parkinsons Disease

· Malignant Cancers

· Full Blown Acquired Immuno Deficiency Syndrome (AIDS)

· Chronic Renal failure

· Hematological disorders
- Hemophilia
- Thalassaemia

Deduction is allowed for costs incurred on the treatment of above specified illnesses to a resident taxpayer – individual or HUF in India (i.e. NRI cannot claim this deduction).

This deduction is allowed for treatment of self, spouse, children, siblings, and parents, wholly dependent on you.

However, if you have availed any reimbursement for the treatment from your insurance company or employer, the deduction under this section shall be reduced by the amount received under insurance or reimbursed by the employer.

The deduction will only be allowed on submission of a certificate as proof for the specified ailment from a neurologist, an oncologist, a urologist, a haematologist, an immunologist or such other specialist as may be prescribed, working in a government hospital.

This certificate is to be provided in the prescribed Form 10-I.

See link. http://law.incometaxindia.gov.in/DITTaxmann/IncomeTaxRules/pdf/itr62Form10I.pdf

The amount of deduction allowed is:

- Actual sum paid for the medical treatment subject to a maximum of Rs. 40,000.

- Where the actual sum paid for the medical treatment is in respect of a senior citizen (age 65 years or more), the upper limit is higher – Rs. 60,000.

To claim this higher deduction of Rs 60,000 proof of age of the patient is required.

Salaried tax payers can include this deduction along with investment declaration provided to their employer around this time of the year. This will ensure the deduction is taken care of in the TDS calculation and reflected in your Form 16.

SOURCE:
http://caregiverfriend.blogspot.com/2011/12/are-you-claiming-this-income-tax.html?spref=fb

Missing Senior Citizen Alert Blog: HELP find Missing Senior Citizens in INDIA. By Silver Innings Foundation (Mumbai).

2011-12-04T05:47:00.000-08:00

HELP find Missing Senior Citizens

This is blog is created by Silver Inning Foundation,

an NGO that works with Senior Citizens to help find missing

Senior Citizens in India and around Globe.

If your elders or parents or friends who are 60 yrs and above goes missing,
we request you to first file police complaint and send us the copy of
police complaint, their Passport size photograph with other details
and contact number at silverinnings@gmail.com .

You need to look for missing people at places such as Old Age Homes,

Hospitals, Railway Stations, Bus Stations, Religious places, Mental asylum,

Clinics, Morgues , Foot paths, Parks/Gardens etc........

People who are 60yrs and above might be suffering from Alzheimer's /
Dementia, a memory loss diseases which makes it difficult but not
impossible to find them.

If any of them is suffering from such disease then request you to take

precaution like - keep with them ID card, Telephone Diary,

A name written wrist band etc .... you also need to have recent photo's of them,

inform your relatives, friends and others.

We request government authorities and civil society to helps us to trace

those Elders and help them to unite with their beloved.

Lets together we all join hands try to Find someone's missing
Grandparents, Parent, Elders ......

Please note we are doing this in Good Faith and we are not liable
with any wrong information provided by family and people.

This service is FREE OF COST ( for Online Posting ONLY)
for helping to find missing Elders.
We will use Social Media tools and if possible ground work
and help of Senior Citizens Associations, NGO's, Government,
Media and Police/Law agency.

Missing Senior Citizen Alert Blog: HELP find Missing Senior Citizens: This is blog is created by Silver Inning Foundation, an NGO that works with Senior Citizens to help find missing Senior Citizens in India.

VIDEO on End of Life Nursing from Life Before Death.

2011-12-02T04:15:00.000-08:00

Life Before Death
Do nurses get the credit they deserve in transforming the lives of patients and families facing life limiting illness? Please watch, share and comment on this week's Short Film...

Mr Manshuklal V. Ruparelia to the Government of Maharashtra on the issues Senior Citizen are facing. (Video in english)

2011-11-29T13:30:00.000-08:00

78yrs young RTI & Senior Citizen Activist Mr.Manshuklal.V.Ruparelia talks about the problems of Senior Citizens and the State Government Neglect and lack of Political Will for the Policy and Welfare of Senior Citizens. This One Man Mission Pledges to Fight till Last Breath to bring Justice and Dignity to Senior Citizens in India and State of Maharashtra.

"Missing Senior Citizen Alert Blog" : A new Net Service by Silver Innings Foundation, Mumbai.

2011-11-26T04:50:00.001-08:00

FRIDAY, NOVEMBER 25, 2011

HELP find Missing Senior Citizens

This is blog is created by Silver Inning Foundation, an NGO that works

with Senior Citizens to help find missing Senior Citizens in India and

around Globe.

If your elders or parents or friends who are 60 yrs & above goes missing,

we request you to first file police complaint

and send us the copy of police complaint , their Passport size

photograph with other details and contact number

at silverinnings@gmail.com .

You need to look for missing people at places such as Old Age Homes,

Hospitals , Railway Stations, Bus Stations, Religious places ,

Mental asylum , Clinics , Morgues , Foot paths , Parks/Gardens etc........

People who are 60yrs and above might be suffering from Alzheimer's/

Dementia , a memory loss diseases which makes it difficult but not

impossible to find them.

If any of them is suffering from such disease then request you to take

precaution like :

- keep with them ID card , Telephone Diary , A name written wrist band etc .... you also need to have recent photo's of them, inform your relatives , friends and others.

We request government authorities and civil society to helps us to trace those

Elders and help them to unite with their beloved.

Lets together we all join hands try to Find someone's missing

Grandparents, Parent, Elders ......

Please note we are doing this in Good Faith and we are not liable with

any wrong information provided by family and people.

This service is FREE OF COST for helping to find missing Elders.

We will use Social Media tools and if possible ground work and help

of Senior Citizens Associations, NGO's, Government, Media and

Police/Law agency.

Lets give them Dignity , Security , Love , Care & Smile.

LINK :

http://missingseniorcitizenalert.blogspot.com/2011/11/help-find-missing-senior-citizens.html

Slideshow : "Helping a dementia patient with activities of daily living: an example from India. By Swapna Kishore, India.

2011-11-25T07:02:00.000-08:00

Slideshow on the Difference between Dementia and Alzheimer's? By Swapna Kishore, India. (Hindi/English version)

2011-11-25T07:00:00.000-08:00

Late-stage dementia care by the Dementia Care Notes Website.

2011-11-20T03:05:00.001-08:00

"A late-stage dementia patient is dependent on others for all activities. He/ she is bed-ridden, or almost bed-ridden. Caring for a late-stage dementia person is very different from caring for a early dementia patient or a mid-stage dementia patient (see: Plan care for various dementia stages).

In India, with hardly any assisted living centres that accept dementia patients, care for late stage patients is done at home. Home must, therefore, be adapted for such care; dementia caregivers must discuss with their doctor for information on setting up home for care, and for the skills to learn for such care.

Home care of a late-stage dementia patient requires good access to medical support, such as doctors who do home visits, pathology labs that can take samples from home, and other such facilities. This is the final stage of the disease, and the patient will begin to deteriorate and fade away, and finally die.

This page discusses an indicative (but not exhaustive) list of what caregivers need to know.

On this page:

READ MORE AND SEE THE VIDEO AT :

http://dementia-care-notes.in/caregivers/toolkit/late-stage-care/

VIDEO : http://alzheimerdiseaseinindia.blogspot.com/2011/11/video-home-care-of-bed-ridden-patient.html

VIDEO : Home Care of Bed Ridden Patient in the indian setting. (27min)

2011-11-20T02:46:00.000-08:00