World Alzheimer's Day (WAD) 2011 Report: ARDSI Greater Mumbai

                        

World Alzheimer's Awareness Fortnight 7^th Sep 2011 to 27^th Sep . The theme for World Alzheimer's Day™ 2011:  Faces of Dementia .

  

On the occasion of World Alzheimer’s Day on 21st Sep 2011  ARDSI (Alzheimer's & Related Disorders Society of India) Greater Mumbai in association with ‘Silver Inning Foundation’ organized a Fortnight  Programme from 7^th Sep 2011 to 27^th Sep 2011  to create awareness about  Dementia and Alzheimer’s in city of Mumbai. All over India ARDSI and its networking organisation hosted various awareness campaign.

Programme detail:         

                                    

1)    On 7th Sep a Talk and Screening of Documentary ‘Drifting Through Time ‘ was organized at Nirmala Niketan college of Social Work , Churchgate- for Student from 2pm to 3.30pm . Around 200 students and Teachers attended

2)    On 18th Sep a Talk cum presentation was organized at Senior Citizens Association at Everest World CHS , Ghodbandar Road , Thane from  4pm to 6pm . Around 25 people participated               

3)    On 20th Sep a Talk cum Screening of Documentary ‘Drifting Through Time ‘ was organized at SVT college of Home Science (SNDT University ) Juhu  for Students , Teachers and Family Members from 1.30pm to 3pm . It was covered by National TV Channel. Around 190 people attended           

4)    On World Alzheimer’s Day 21st Sep –Senior Citizens Memory Walk and a Talk was organized at Pushpa Maa Foundation  (Dad Dadi Park) ,Veer Sawarkar Udyan ,  L T Road , Borivali East from 5pm to 7.30pm . Around 300 Senior Citizens Participated             

5)    On 21^st Sep 2011 on World Alzheimer’s Day around 3000 SMS was send to create awareness                  

6)    On 24th Sep a Information Stall and Memory Games was organized at  Elder Mela at TISS ,Deonar  from 10am to 5.30pm . Around 150 people visited the stall                        

7)    On 27th Sep a Talk and screening of Documentary ‘Drifting Through Time ‘ was organized at HELP Library, CST,Fort  from 4pm to 6pm . 25 People participated

8)    Around 50 Posters and some banners were distributed to various Senior Citizens Associations , Hospitals and Clinics 

Media Coverage:

This year again we were able to attract Media, following are the detail of media coverage:

1)    Our "World Alzheimer's Day 2011" Greater Mumbai events was covered by Govt National TV - DD SAHYADRI channel on 21st Sep at 8.30am , 2.30pm and 5pm .

2)    Our World Alzheimer's Day 21st Sep 2011 story was published in one of largest selling local language Marathi Newspaper in Maharashtra state – SAKAL : http://www.esakal.com/esakal/20110922/4827710379560695467.htm

3)    25th Sep 2011  Sunday Midday , Mumbai carries our World Alzheimer's Day 2011 Story - Excellent advocacy and networking - thanks to all contributors - Part 1 : http://epaper2.mid-day.com/showtext.aspx?boxid=75114278&parentid=152018&issuedate=25092011&edd123=mumbai

4)    25th Sep 2011  Sunday Midday , Mumbai carries our World Alzheimer's Day 2011 Story - Excellent advocacy and networking -   thanks to all contributors - Part 2: http://epaper2.mid-day.com/showtext.aspx?boxid=75233935&parentid=152019&issuedate=25092011&edd123=mumbai

5)    Website:  http://ardsigreatermumbai.blogspot.com/2011/09/world-alzheimers-day-2011-awareness.html

6)    Facebook: https://www.facebook.com/groups/ARDSI/ 

We thank Dr.Charles Pinto, Dr.Devendra Save , Nanda Narvekar , Mona Mishra , Dhanalaxmi Rao , Jimmy Dorji , Dr.Geeta Balakrishnan , Prof. Suja Koshy, Prof. Parul Kibliwala , Prof. Nasreen , Mrs. Anu Vijay Kumar , Mr.David and Ms. Dhamini Ratnam , Ms. Hendi Lingiah , Eisai Pharma , Media and all Volunteers for their help to make this programme a great success.

This programme was organized by ARDSI Greater Mumbai Chapter & Silver Inning Foundation in association with Nirmala Niketan college of Social Work  , Arundathi & Kiron Kaikini , SVT college of Home Science (SNDT) , Pushpa Maa Foundation ,Center for Life Long Learning -TISS , Eisai Pharma ,& Times Foundation/ HELP Library.

Contact: ARDSI Greater Mumbai Chapter

Mobile: 9987104233 (  Mon to Sat 10am to 6pm)  Email: ardsigreatermumbai@gmail.com ;  

What Is Alzheimer's Disease? Check this Excellent Video

These very-short "pocket" films are designed to be viewed anywhere at anytime: a doctor's office, Parliament , a family living room. Please take them. Put them on your own website or powerpoint presentation; play them on your phone or tablet. They are free for non-commercial use.

MORE THAN 40 LEADING ALZHEIMER’S ORGANIZATIONS CALL FOR DRAMATIC NEW STRATEGY TO STOP ALZHEIMER’S DISEASE

More than 40 of the nation’s leading voices and organizations in Alzheimer’s research, drug discovery and care today announced a series of aggressive and innovative recommendations to transform the current trajectory of Alzheimer’s disease, now slated to kill millions of Americans and to cost the nation over two trillion dollars in the coming decade.

“Alzheimer's is a progressive neurodegenerative disease which is uniformly fatal and for which there are no effective treatments,” said Howard Fillit, MD, who is Executive Director of the Alzheimer’s Drug Discovery Foundation, which is a member of LEAD.

“The Obama Administration has a unique opportunity to set the nation on a new course with Alzheimer’s disease. An entire generation of baby boomers will be turning 65 at the rate of 10,000 per day for the next 19 years, and we have no sustainable long-term answer for them to this disease epidemic. It cannot be emphasized enough that we are in a race against time to stop Alzheimer’s disease before it becomes America’s single largest public health, fiscal and economic threat.”
The recommendations by Leaders Engaged on Alzheimer’s Disease (LEAD) are directed to the Congressionally-mandated Advisory Council on Alzheimer’s Research, Care, and Services – the committee tasked with advising on the first-ever national action plan to deal with the growing Alzheimer’s disease crisis.

Alzheimer’s disease currently affects an estimated 5.1 million Americans and, absent disease-modifying treatments, that number is expected to rise exponentially in the coming decades. To significantly advance progress in Alzheimer’s research, care and prevention, experts who prepared the LEAD report propose the following vital recommendations:

· Triple the amount of funding for Alzheimer’s disease research, while reducing the current duplication of research efforts as well as spurring innovation through a new outcomes-oriented research strategy.

· Create incentives to drive investment in new Alzheimer’s disease therapies through enhanced market exclusivity for companies delivering treatments to market, development of large-scale patient registries to reduce the time and cost of recruiting thousands of individuals to clinical trials, and focusing attention on the development of qualified biomarkers to shorten the time needed to assess the effectiveness of new drug candidates.

· Reduce healthcare costs and improve quality of care for people with Alzheimer’s disease by implementing at a national level proven models of caring for individuals with the brain disorder and their caregivers, developing critical assistive tools and services for family caregivers, and adequately reimbursing healthcare professionals for improved high quality care.

· Establish a dedicated fund at the U.S. Department of Health and Human Services (HHS) to invest with private investors in new start-up drug discovery companies that are developing innovative treatments and therapies with the best likelihood for reducing Medicare and Medicaid spending on Alzheimer’s disease care.

· Prepare for the explosion in Alzheimer’s cases by building a healthcare workforce skilled in the care of people with the disease and by ensuring that adequate and effective services and support care are accessible to all families coping with the disease.


Read More and See the Detail Report here : MORE THAN 40 LEADING ALZHEIMER’S ORGANIZATIONS CALL FOR DRAMATIC NEW STRATEGY TO STOP ALZHEIMER’S DISEASE

India will have one of the largest numbers of Elders with Alzheimer’s / Dementia - World Alzheimer’s Day 2011

New case of dementia arises every seven seconds in the world . And India will have one of the largest numbers of elders with this mind crippling illness.

According to many scientific estimates published worldwide, a new case of dementia arises every seven seconds in the world with the number of people with dementia set to double every 20 years. The global figures are estimated at 36 million people living with Alzheimer’s and related disorders as per Alzheimer’s Disease International (ADI) World Report 2010.  By 2040, over 82 million elderly people are expected to have AD if the current numbers hold and no preventive treatments become available.

The number of persons with dementia double every 5 years of age and so India will have one of the largest numbers of elders with this problem. As per the current estimates, India has about 3.7 million persons with dementia and this figure will double by 2030 to about 7 million persons. The cost of caring as a country has been conservatively estimated at present is Rs. 14,700 Crores. While the numbers are expected to double by 2030, cost would increase three times. The study, the first such authenticated one ever undertaken in a developing country, was done by Alzheimer’s and Related Disorders Society of India (ARDSI), a non-profit organization established in 1992, which has published a country status report on Dementia (The Dementia India Report).

These alarming figures are a call to action. Government must start to plan policy and allocate health and welfare resources for the future. There has to be fundamental awareness among policy makers, clinicians and the public and more community based services, welfare and support at an accelerated pace. Many developed countries like USA, UK, France, Australia, New Zealand and Canada have National Dementia Strategies and Dementia Programmes for their countries.  In Asia, some of the countries that are developing a National Dementia Programme are Japan, Singapore and Korea.

Since its inception, ARDSI is been working with the aim of raising awareness, developing care and services, offer trainings, promote research and to work on advocacy for national policies and programmes in need of patients with dementia and families across India. Presently ARDSI has 14 chapters in India, apart from running directly day care centres, domiciliary care services, respite care centres, memory clinics and training for doctors, nurses and care givers. ARDSI is the first Afro-Asian organization to receive full membership with Alzheimer’s Disease International (ADI) a worldwide federation of 76 national Alzheimer associations across the globe, which has an official relationship with the W.H.O.

Dementia is one of the major causes of disability in late life.  A syndrome usually chronic, characterized by a progressive, collective deterioration of intellect including memory, learning, orientation, language, comprehension and judgment due to disease of the brain, it mainly affects older people; about 2% of cases start before the age of 65 years.  After this, the prevalence doubles with the increase of every five year. Once considered a rare disorder, Alzheimer’s Disease-AD, is now seen emerging as a major public health and social problem that is seriously affecting millions of older people and their families. 

Early identification is important for bringing management in daily life, which would help both the person and the carer for a secured and dignified living. Further, early diagnosis would also increase timely medical and / or surgical intervention as some less common causes of dementia like chronic infections, brain tumors, hypothyroidism, subdural hemorrhage, normal pressure hydrocephalus, metabolic conditions and toxins or deficiencies of vitamin B`12 and folic acid are may be treated partially. 

The Dementia India Report 2010 was an effort to document comprehensive holistic care and support to the affected people and their families, a nation-wide assessment of prevalence, gaps in service facilities available and cost of care services, analysed through series of workshops all over India in the presence of experts in the medical stream of neurology, psychiatry, psychology, NGOs, architects, insurance people, lawyers etc,.

The following details give the highlights of the status of Dementia in India:

·         The impact of dementia on the individual, the family and society will increase exponentially in terms of the burden, disablement and cost of care. There will be an increase in demand for support services.

·         Person with dementia do not access and use health and social care services. A small portion of persons with dementia and families access private health services due to absence of or unsatisfactory public services, which is again delivered at piece meal and inefficient fashion.

·         Dementia care is characterized by a significant lack of service delivery and evidence on outcomes with interventions.

·         More investment and careful planning will be needed to maximize the quality of life of Persons with dementia and their families, and to accomplish that in an efficient manner with the available services.

·         There are hardly any standard practice guidelines and treatment centres in India.

The recommendations that follow therefore contain both a series of proposals for policy development and proposals for improving the evidence base:

Recommendations:

1.    Make Dementia a national priority

2.    Increase funding for dementia research

3.    Increase awareness about dementia

4.    Improve dementia identification and care skills

5.    Develop community support

6.    Guarantee carer support packages

7.    Develop comprehensive dementia care models

8.    Develop new National Policies and Legislation for People with Dementia.

World Alzheimer’s Day

World Alzheimer’s Day (WAD) was launched 17 years ago on 21^st September 1994, to unite people affected by Alzheimer’s disease and other dementia's around the world. The day gives people with dementia, carers and medical professionals worldwide the chance to share their stories and take part in a variety of activities in order to raise awareness among the public and key decision makers.

World Alzheimer’s Day also provides Alzheimer’s associations with an opportunity to share their work and connect with more people in need of their services. 

You can support and participate in WAD 2011 events hosted by various ARDSI chapters & networking NGO's all over India , you can contact us for more details.

For more details and reference:

Alzheimer’s and Related disorders Society of India (ARDSI)

National Administrative Office

P. B. No. 53, Guruvayoor Road,

Kunnamkulam – 680 503 Kerala INDIA.

Tel: 04885 223801 / Fax: 04885 224817

Tel. 098461 98473 (Helpline)

Email: alzheimr@md2.vsnl.net.in, ardsinationaloffice@gmail.com

www.alzheimer-india.org

 

World Alzheimer's Day 2011 : Awareness Fortnight - Mumbai , India

The theme for World Alzheimer's Day™ 2011:  Faces of Dementia

  

On the occasion of World Alzheimer’s Day on 21st Sep 2011  ARDSI (Alzheimer's & Related Disorders Society of India) Greater Mumbai in association with ‘Silver Inning Foundation’ is proud to Announce Fortnight  Programme from 7^th Sep 2011 to 27^th Sep 2011  to create awareness about  Dementia and Alzheimer’s in city of Mumbai. All over India ARDSI and its networking organisation will hold awareness campaign.

 Tentative Programme detail:

1.     7th Sep - Talk / Documentary ‘Drifting Through Time ‘ at Nirmala Niketan college of Social Work , Churchgate- for Student  .Time: 2pm to 3.30pm

2.     18th Sep - Talk at Senior Citizens Asso at Everest World CHS , Ghodbandar Road , Thane . Time: 4pm onward

3.     20th Sep -Talk / Documentary ‘Drifting Through Time ‘ at SVT college of Home Science (SNDT) Juhu – for Students. Time : 1.30pm to 3pm

4.     21st Sep –Senior Citizens Memory Walk and Talk at Pushpa Maa Foundation ,Veer Sawarkar Udyan ,  L T Road , Borivali East. 5pm onwards

5.     24th Sep - Information Stall and Memory Games at  Elder Mela at TISS ,Deonar .Time: 10am to 5.30pm

6.     27th Sep - Talk/Documentary ‘Drifting Through Time ‘ at HELP Library, CST,Fort . Time: 4pm to 6pm 

Contact: ARDSI Greater Mumbai Chapter/ Silver Inning Foundation, Mobile: 9987104233/ 9819819145 ( Mon to Sat 10am to 6pm)  Email: ardsigreatermumbai@gmail.com ;  silverinnings@gmail.com

This programme is organized by ARDSI Greater Mumbai Chapter & Silver Inning Foundation in association with Nirmala Niketan college of Social Work  , Arundathi & Kiron Kaikini , SVT college of Home Science (SNDT) , Pushpa Maa Foundation ,Center for Life Long Learning -TISS , Eisai Pharma & Times Foundation/ HELP Library.

Remember Those Who Can Not Remember 

Twelve steps for care-givers

Care-givers and caring

The immediate family members of patients are often elderly themselves and have their own medical problems. The care-givers should never neglect their own health as their well-being is vital for appropriate care of the patient.

It has been said about Alzheimer’s disease that although the patient has the disease, the family members suffer the most.

In the cultural context of the Member Countries of South-East Asia, care of Alzheimer’s disease patients is best provided by lay care-givers. These lay care-givers should be specifically trained in patient care. They must understand what Alzheimer’s disease is, and what the patient is capable or incapable of doing. Ideally, continuity of care by the same care-giver is desirable, but this may not be practical. The "fatigue factor" of care-givers also needs to be taken into consideration. Immediate family members should be available to extend psychological support and supervision of lay care-givers. It is not necessary for them to do the physical work themselves.

It has been reported that almost half the patients in a study undertaken in Mumbai, India, were either single or widowed. This finding is significant as research workers came across patients who, having nobody to take care of them, were being looked after by neighbours. Clearly, there is a pressing need for state and community organizations to create the infrastructure necessary for the care of such persons. Ironically, none of the residential institutions for the elderly were willing to take in persons diagnosed with Alzheimer’s disease. Since the patients are looked after by their families until the time of death, there is a tremendous need for the education of care-givers and other forms of support. Without this, there is a high risk of patient neglect.

Management of patients of Alzheimer’s disease

While there is no specific cure for Alzheimer’s disease, there is a need to look after the patients as well as their care-givers. Non-pharmacological interventions and the use of residential and domestic resources, such as day care, respite care and nursing home care, may reduce symptoms and suffering. Another important factor is financial and legal counselling essentially needed to preserve income and take decisions affecting the whole family.

In the early stages of Alzheimer’s disease, when intellectual function is reasonably preserved, patients may be encouraged to attend to legal matters and give consent to the types of treatment that they desire. These would form the Advance Directives of the person. An Enduring or Durable Power of Attorney could be prepared in favour of a loved one in the family or some close friend if such procedures are established in the country’s legal system. A formal will could also be executed before it is too late as a result of the patient’s mental incompetence.

In the later stages of Alzheimer’s disease, the patient may not be aware of the consequences of the illness and it would then be a family decision to get him/her assessed and investigated. 

Treatment would mostly be based on the symptoms observed and arrangements have to be made for the long-term care of the individual by way of providing for care-givers, especially if there are none in the family. 

1.    Although I cannot control the disease process, I need to remember I can control many aspects of how it affects my relative.

2.    I need to take care of myself, so that I can continue doing the things that are most important.

3.    I need to simplify my lifestyle so that my time and energy are available for things that are really important at this time.

4.    I need to cultivate the gift of allowing others to help me because caring for my relative is too big a job to be done by one person.

5.    I need to take one day at a time rather than worry about what may or may not happen in the future.

6.    I need to structure my day because a consistent schedule makes life easier for me and my relative.

7.    I need to have a sense of humour because laughter helps to put things in a more positive perspective.

8.    I need to remember that my relative is not being difficult on purpose; rather that his behaviour and emotions are distorted by the illness.

9.    I need to focus on and enjoy what my relative can still do rather than constantly lament over what is gone.

10. I need to increasingly depend upon other relationships for love and support.

11. I need to frequently remind myself that I am doing the best that I can at this very moment.

12. I need to draw upon the Higher Power, which I believe is available to me.

Source: http://my.webmd.com/content/dmk dmk_article_3961786,