Alzheimer’s and Dementia Important Resources in India

ARDSI Greater Mumbai chapter in association with Silver Inning Foundation has compiled important organizations/resources for Alzheimer’s & Dementia in India.

ARDSI:  http://www.alzheimer.org.in/

ARDSI Greater Mumbai Chapter:  http://ardsigreatermumbai.blogspot.com/

ARDSI Kolkata Chapter:  http://www.ardsikolkata.org/ 

Dementia Bangalore:   http://www.dementiabangalore.in/

Nightingales Medical Trust:  http://nightingaleseldercare.com/

ARDSI Hyderabad Deccan:   http://www.ardsihyd.org/ 

ARDSI Delhi Chapter:  http://alzheimersdelhi.org/ardsi_today.htm

ARDSI Pathanamthitta Chapter: http://www.alzheimerspathanamthitta.org/Services.html

Silver Inning Foundation: www.silverinningfoundation.org

Alzheimer's Disease in India:   http://alzheimerdiseaseinindia.blogspot.com/ 

Dementia Care Notes :  http://dementia-care-notes.in/

Memory Solutions:  http://www.memorysolutions.co.in/

Swapna Writes:  http://swapnawrites.com/  
Swapna Writes Wordpress Blog:  http://swapnawrites.wordpress.com/ 

Silver Innings:   http://www.silverinnings.com/

Silver Innings Blog:  http://silverinnings.blogspot.com/

Dignity Lifestyle:  http://www.dignitylifestyle.org/

Chaitanya Mental Health Care Centre : http://www.chaitanyarehab.com/  

Dementia India Report 2010: http://www.ardsi.org/assets/dementia.pdf

Alzheimer’s disease International:  http://www.alz.co.uk/ 

World Alzheimer Report 2010: http://www.alz.org/documents/national/World_Alzheimer_Report_2010_Summary%281%29.pdf

International Resource:

The Caregiver’s Voice : http://www.thecaregiversvoice.com/

Pls let us know if we have missed someone/if you want to add, write to us at silverinnings@gmail.com / ardsigreatermumbai@gmail.com

Dementia Care Giver Training Programme Report May 2011

First time in Mumbai unique Dementia Care Giver Training Programme was organized by Silver Inning Foundation in association with ARDSI Greater Mumbai Chapter & Supported by Harmony for Silvers Foundation on 6^th May to 8^th May 2011.This workshop was without any support from government and without any financial support from any organisation.

This three full days 10am to 5.30pm extensive ‘Quality Dementia Care Framework’, Dementia Care Giver Training workshop was undertaken leadership of Mrs. Nilanjana Maulik: Expert Trainer & Director of Dementia Services, ARDSI Calcutta Chapter at Venue : Harmony Interactive Centre , 7th, Floor, Municipal Hospital Bldg , Zaobawadi Lane, Next to Ram Mandir , Thakurdwar,Girgaum , Mumbai Maharashtra , India 400002.

Background:

Dementia is a progressive brain dysfunction (in Latin 'dementia' means irrationality), which results in a restriction of daily activities and in most cases leads in the long term to the need for care. Dementia is one of the major causes of disability in late-life.  Many diseases can result in dementia, the most common one being Alzheimer's disease. It mainly affects older people; about 2% of cases start before the age of 60 years. After this, the prevalence doubles every five years. Dementia affects each person and family differently. As dementias progress, there are notable changes in memory, thinking, language, behavior and function — all of which require different skills and strategies. Very few of us have a natural born knack for care giving. Most caregivers have to learn and practice these new skills. It is estimated that over 3.7 million people are affected by dementia in our country. This is expected to double by 2030. The challenge posed by dementia as a health and social issue is of a scale we can no longer ignore. Despite the magnitude, there is gross ignorance, neglect and scarce services for people with dementia and their families.

                      

Need:

The importance of taking care of elderly has become more relevant in India due to the increased lifespan and consequent increase in the population of the aged.  As a result of the demographic transition and changing family structure, care of aged is emerging as concern of modern times. The support system and care giving that had been earlier available in the traditional family set up for the elderly has withered away. One of the most important components of developing dementia services in the Country is training health human resources.  We at Silver Inning Foundation like other NGO’s have realize the implications of the increasing aging population in the country, and responded by creating care programmes and delivery services aimed at meeting the needs of older persons. 

The Training of Care Giver for people with Dementia has evolved with parting of knowledge and innovative ways of empowering the family members and professionals to gain skill sets that could help them in Management of Dementia. By undertaking such Geriatric care trainings we at Silver Inning Foundation will achieve our vision of creating an Elder Friendly World where Ageing becomes a Positive and Rewarding Experience.

                 

Objectives:

• To create awareness about dementia and its various types.
• To educate volunteers and caregivers to identify early warning signs of dementia and early prevention of dementia.
• To train volunteers and caregivers to disseminate knowledge about dementia to local population and Senior Citizens.
• To enhance the capacity & skills of Care givers in managing elderly with dementia.

                  

Who could participate: Social Workers, Medical Professionals, Nursing Students, Family Members, Care Givers, Psychologist, Gerontologist, Geriatricians, Legal Professional, Police Professionals, Senior Citizens and Staff of NGO/Old Age Homes

Eligibility criteria:

• Minimum Age - 18 years and above
• Minimum education- 10^th  +
• Must have Passion to serve.

Language of Training: English

                  

Methodology:

The methodology of training would include lecture cum discussions, case presentations, group exercises, role play and efforts would be made to make the training participatory in approach. Pre and post assessment evaluation of the participants on knowledge base would be conducted at the beginning and end of the course respectively.

What participant got:

• Knowledge & skill for Dementia management
• Certificate of Participation
• Free Leaflets/notes 
• Books on dementia/care giving was made available at Rs.275/175/-
• Free Volunteer Membership to Silver Inning Foundation & ARDSI Greater Mumbai Chapter

             

Number of Participant: Total Paid Participant was 35, but only 33 Attended. 2 drop out due to medical reason.

Registration Fees was:  Rs. 700/- p.p. non residential (inclusive of lunches, refreshments and materials). Special rates of Rs.500/- p.p. for Senior Citizens who are age 50yrs and above. Rs.  500/- p.p. early bird discount until 15^th April 2011. Last date for registration was 30^th April 2011.  There was no refund of registration fees in event of cancellation by the participant.

               

Faculty:

1)    Sailesh Mishra (Founder President Silver Inning Foundation & Hon. Secretary ARDSI Greater Mumbai; Social Worker & Elder Care/Dementia Care Activist)

2)    Dr. Alka Subramanyam (Psychiatrist, Nair Hospital)

3)    Ms.Suchita Sawant (Prof. of Nursing, Jaslok Hospital)

4)    Anu Vijaykumar (Family Carer & Corporate Human Resources, ACC Ltd.)

5)    Dr.Leena Gangolli (Public Health Physician & Home care service provider)

6)    Nilanjana Maulik (Director -Dementia Services, ARDSI Kolkata; MA Sociology & Social Anthropology; MMHS -USA (Master of Management in Human Services); National Award Winner ARDSI: BEST DEMENTIA CARE WORKER, 2006)

Support:

Santosh and other staff of Harmony for Silvers Foundation

Sunita Mall & Haneeta Padam volunteers from iVolunteers

               

Topics Covered:

·         Introduction to Dementia: Dementia as a Social Problem ; Necessity of Dementia Training ; Present & Future of Dementia Care –Facilities/resources/Policy/Plan

·         Doctors Perspective: Dementia as a disease: definition/types/causes/diagnosis/treatment/Memory screening tools– MMSE/others

·         Psychiatric conditions associated with Dementia- assessment & treatment

·         Nursing Care of Dementia/Alzheimer’s /Elderly

·         Voice of a Carer / Family carer: Dementia Perspective

·         Importance of Nutrition in Elderly/ people with Dementia

·         Dementia Care :  Preventive measures –Brain Boosters/other exercises , Characteristic problems of dementia – in independent living/daily care/medical/mood , Experience of Dementia – all stages on the person/others , Role of carers – all stages ; Practical care day to day- ADL’s /safety , Person Centered Care , Working with carers , Guidelines and principles of communication ; Non-Pharmacological therapies , Dementia & Activities ; Understanding Behavioral changes/Responding positively to difficult behaviors ;Identifying good and bad Care practice

        

     I.        Pre Training Evaluation:

A.   Total Participant: 33

B.   Participant Gender:

Female: 77 %

Male: 23%

C.   Participant Profile:

Nurse: 18%

NGO: 18%

Senior Citizens: 18%

Others (Medical Doctors, Pastor, Occupational Therapist, Physiotherapist, Psychologist, Professor etc): 46%

D.   Participant location:

Mumbai City: 63%

Outside Mumbai City (Suburban like Mira Road, Virar, Vasai Navi Mumbai): 37%

E.   Participant who knew about the word Dementia: 99 %

F.    Participant background:

Care Givers/ Family Carers: 75%

Non Carers: 25%

G.   Any Dementia Training background:

No Training: 100%

                     

   II.        Post Training Evaluation:

H.   Participant who found workshop Useful: 100%

I.      Which Session/Topic they like most:

All: 46%

Dementia Care: 49%

Others: 5%

J.    Future session required in:

More Interactive, Case Study: 34%

Others (Role Play , Address problem like chocking, bathing etc , Multidisciplinary approach including Spiritualism , Detail Nursing Care , Visit to Dementia Person/ Facility , Cognitive Rehabilitation , Brain Boosters exercise , Detail of Different Stages

)   : 39%

No addition required: 27%

       

In the end Certificate were distributed to all the faculty and participant.

This programme was managed by Silver Innings, a social Enterprise for Age Care. Silver Innings is working towards creating an Elder Friendly World where Ageing becomes a Positive and Rewarding Experience. Website:

www.silverinnings.com . Email: silverinnings@gmail.com ; info@silverinnings.com

Important References:

ARDSI Kolkata Chapter:  http://www.ardsikolkata.org/ 

ARDSI Greater Mumbai Chapter:  http://ardsigreatermumbai.blogspot.com/

Silver Inning Foundation: www.silverinningfoundation.org

ARDSI:  http://www.alzheimer.org.in/

Alzheimer’s disease International:  http://www.alz.co.uk/ 

Dementia Bangalore:   http://www.dementiabangalore.in/

Nightingales Medical Trust:  http://nightingaleseldercare.com/

ARDSI Hyderabad Deccan:   http://www.ardsihyd.org/ 

Alzheimer's Disease in India:   http://alzheimerdiseaseinindia.blogspot.com/ 

Swapna Writes:  http://swapnawrites.com/ 

Dementia India Report 2010: http://www.ardsi.org/assets/dementia.pdf

World Alzheimer Report 2010: http://www.alz.org/documents/national/World_Alzheimer_Report_2010_Summary%281%29.pdf
Harmony for Silvers Foundation:   http://www.harmonyindia.org/

iVoluneers :  http://www.ivolunteer.in/ 

How to Reduce Wandering in People with Alzheimer’s

Wandering is a common but dangerous symptom of Alzheimer’s disease — a degenerative disease of the brain that affects memory and cognition.

Alzheimer’s patients may suddenly walk off and become lost, frightened and confused about where they are, and many do not even know where they are trying to go. Since many of these people can’t identify themselves or where they live, wandering in unconfined and unsecured areas can be very dangerous.

Disorientation, medication, stress, fear or anxiety, and restlessness may all cause an Alzheimer’s patient to wander.

To keep patients safe and minimize wandering, the Alzheimer’s Association of Los Angeles offers these suggestions:

• Make sure the patient is always comfortable and doesn’t need to use the restroom and isn’t hungry or thirsty.
• Try to make sure he receives regular exercise and activity to reduce restlessness and boredom. If he is still capable, let the patient help with daily chores like laundry or light cooking or housekeeping.
• Tell the person often that you are there to help him, and make sure he understands he doesn’t need to be anywhere but right where he is.
• Keep the environment quiet and relaxing — avoid noise and confusion that may frighten the patient into trying to scamper away.
• If possible, keep doors locked and secured to prevent wandering into the street and getting lost.
• Devise a plan of action in the event the patient does become lost — keep current information on hand, like height and weight, and a recent photograph. Also, keep a list of places where the person has wandered previously, or places he used to frequent that he may be trying to find. 

By Diana Kohnle

Source : http://psychcentral.com/lib/2007/how-to-reduce-wandering-in-people-with-alzheimers/ 

‘Alzheimer's will be on the rise in India'

With the number of elderly people in the country expected to be 9 crore in the Census 2011 report, the government has to recognise that diseases of the elderly is going to be a very important public health problem in India, said Dr. K. Jacob Roy, who was recently elected chairman of Alzheimer's Disease International (ADI).

In an exclusive interview with Shyama Rajagopal, Dr. Roy, who founded the Alzheimer's and Related Disorders Society of India (ARDSI), spoke about conditions of the elderly in the country and specifically about Alzheimer's disease, a complex and frightening disease that is affecting a lot of elderly. He will take on the mantle of ADI chairman for three years in 2012 at the organisation's London meeting.

What is this public health problem?
In 20 years, the number of elderly is going to double which would make India the country with the largest number of elderly in the world.

In that context, the medical problems of a large group would create a public health problem in the country. Since age is the single most risk factor of the disease, and when we have segment of people over 80 growing because of better health care and nutrition, conditions like Alzheimer's will also be on the rise.

What is the extent of the disease?
The prevalence of the disease [in India] is said to be one in 20 for people over 60 years, and one in 5 for people over 80 years. There are about 3.7 crore people affected by the disease, and the cost of treating the disease is pegged at Rs. 14,700 crore.
This is going to treble in the next 20 years as the number of affected is going to double and become 7.6 crore.

So unless we plan now there is going to be a catastrophe. Families are becoming nuclear… and if someone in our family gets dementia, who's going to take care of the person?

How is ARDSI tackling this problem?
ARDSI has come out with a Dementia India report last year — an effort of two years by experts.
When we have to convince the medical community, you need to have scientific data. The developed countries were using their country-specific report to make the Government device policies for supporting the elderly.

It is a scientific authoritative report on dementia and it contains all the statistics you need, like what the disease is all about, the number of people affected, types of dementia, cost of care per person and many more.

This report will be used to influence the Governments, both the Centre and State to recognize dementia as a health priority and include it in the national agenda. If any significant change has to happen, the Government has to accept it and make it a health priority. As the national chairman of ARDSI, the campaign is for the support.

What are the measures adopted in creating facilities for Alzheimer's disease patients?
The facilities that ARDSI is providing in taking care of patients with dementia are on par with what is happening elsewhere in the developed world.

Because we are a developing country, we should not dilute standards. Ideas were taken from the West, but are implemented taking care of our cultural ethos. So far 14 chapters of ARDSI have been started across India. Ten new places have also been identified. We have already started one in Pune. Nagpur, Varanasi, Lucknow, Manipur and Srinagar are among those we will be starting soon. We are going to raise this issue in Parliament and to get Ministry of Health and Social Welfare to fund the programmes.

We need to provide more services for which Governmental support and recognition is necessary. Help to set up memory clinics in all districts, to improve diagnosis, more services like day care, home care, 24-hour residential care, information centre, training programme for doctors and more research programmes are the kind of things for which we want support from the Government.

What kind of work does ADI do?
ADI is not a medical organization, but it has individuals from medical fraternity as well as social organisations. It is an umbrella organisation for societies formed by care givers of patients. I have been part of the ADI for a long time as it was a personal experience of my father being affected by it that led me to search for what could be done.

As the chairman, the agenda will be to extend the reach of ADI where there is hardly anything happening like in Asian and African countries. The first step will be to engage world governments to recognise dementia and to encourage societies to bring out country-specific reports.

What kind of work has ARDSI done?
We started the first ARDSI chapter in Kerala as a result of the Kochi conference in 1998, the first such meeting of ADI that was held outside a developed country. It resulted in forming a group dedicated to research — primarily to developing research and epidemiological studies where hardly any work was done. ADI helped improve the scenario in research in the country from where very little data was coming in.

It also led to the formation of the Asia-specific regional group of ADI and India was the first to join in. I had been associated with ADI as the vice chairman and was also working in the elected board of ADI. The headquarters of ARDSI was shifted from Kunnamkulam (where I'm working in a hospital) in Kerala to New Delhi for better interaction with the governments.

Though awareness programmes on dementia were on for a long time, don't you think films based on the issue helped in reaching out to more people?
The impact of a commercially successful film can never be matched. Obviously it had a profound impact. One Thanmatra (in Malayalam) and one Black (Hindi) is not sufficient.

One needs to continue the efforts. More films and more activities are required to reach out to the people. [Movies should convey] information about what needs to be done for the people affected with dementia, guidelines for caregivers, what should be done and what should not be done.

There should be a change in attitude towards handling the patient.


Source: http://www.hinduonnet.com/seta/2011/04/21/stories/2011042155291700.htm

Silver Inning Foundation Congratulate Dr.Jacob Roy on being appointed as Chairman ADI & is committed to support the cause of Dementia / Alzheimer's .