ALZHEIMER'S DISEASE INTERNATIONAL : Global Connect

1984. A small band of pioneers and experts came together with stars in their eyes and one dream in their minds: “a better life for people with dementia and their carers”.

30 years later, the vision is unchanged and the passion unwavering.

Alzheimer’s Disease International has grown from four members to be the worldwide federation of more than 80 Alzheimer associations. Representing people and nations on all continents, the organisation has become the Global Voice on Dementia.

ADI believes that the key to winning the fight against dementia lies in a unique association of Global Solutions and local knowledge. As such, it works locally, by empowering national Alzheimer associations to promote and offer care and support for people with dementia and their carers, whilst working globally to focus attention on the epidemic and campaign for policy change from governments and the World Health Organization. These are the pillars of ADI’s mission.

Know more here: http://www.alz.co.uk/ 

Alzheimer's Association : for Alzheimer's care, support and research

The Alzheimer's Association is the leading voluntary health organization in Alzheimer's care, support and research.

The Alzheimer’s Association works on a global, national and local level to enhance care and support for all those affected by Alzheimer’s and other dementias. We are here to help.

Visit their Website:  http://www.alz.org/

Dementia Care Notes: Excellent Resource for Caregivers by Swapna Kishore

Dementia Care Notes!: Resources, tips, caregiver stories for dementia caregivers in India

This DEMENTIA CARE NOTES® site offers information, resources, and caregiver stories that could help dementia caregivers. It is intended for family caregivers of persons with dementia, friends, colleagues, and anyone concerned about dementia care in India.

Most families don’t know that dementia cannot be cured. No medicine can slow down the diseases causing a patient’s dementia. That is, no medicine can slow the rate of brain damage. Some medicines give some relief from symptoms for some forms of dementia, but these don’t help all patients. Dementia goes on for many years and the patient needs more and more help with time. Given that medicines give only limited relief, good care is very important for the patient’s well-being. If families understand dementia, they can find better ways to plan and provide care. Everyone will be less stressed.

Many caregivers are confused by conflicting explanations of dementia. One such aspect is how dementia affects persons. Some reports show dementia patients as passive persons, unable to do anything; phrases used include “not quite there” or “absent”. This is misleading. Persons with dementia can lead active and fulfilling lives if given suitable support. Some other reports show patients as unreasonable, agitated, and violent. But not all patients show agitation or other worrying behavior. Also, many factors affect behavior and worrisome behavior can be reduced by adjusting things like the patient’s environment, activities, and interactions. The Dementia Care Notes site provides information to help families understand dementia and care. We also include relevant links and resources. We hope this will make the dementia care journey smoother and more effective for everyone.

Visit the website: http://dementiacarenotes.in/

LIFE OF A LONG DISTANCE CAREGIVER: Alzheimer's - My Mom My Hero

My mom who has ALZHEIMER's/Dementia has become my hero. She touches my heart each and every day, as I am also her caregiver. Mom not only is my hero she continues to inspire me after 11 years of having this disease. It was not always like this, yet today, I am so fortunate to have an unconditional love for her.

I remember, several years ago "defending" myself from a few caregivers who thought that I should not say I was mom's caregiver, since I lived so far away. Their tone was less than complimentary accusing me of not physically caring for my mother each day. Their voices stated how could I speak about being mom's caregiver, what could I possibly know. They had the burden of living with their parent and taking care of them with what seemed to be a shift of twenty four hours a day.

At first I felt hurt. How could they think that the pain of seeing a parent disappear was any different than what they were feeling? I wondered if I was any less of a daughter to my mother because I did not live near her. Did I not feel the same amount of pain or maybe more? What difference did it make? I was and am my mother's daughter, and that will never change no matter how many miles or oceans separate us.

My heart breaks, my eyes fill and swell with tears the same as theirs. My feelings of affection are as deep and I tremble every time my mom forgets my name.

I do have great compassion for them and I could feel and share their pain! Yes I did not live with my mother so maybe my long distance care giving was easier, yet I too, had the agony of hearing and seeing my mother disappear in front of my very eyes. One moment she knew me, and then while still on the same phone call she had no idea who I was or who she was speaking to.

I spoke to mom's caregivers every single day to hear all about mom's conditions. Sometimes mom had a moment of clarity and at other times she was going by ambulance to the emergency room after the aides found her bruised or with a UTI (urinary tract infection) which had mom hallucinating. I heard about how mom loved to listen to the CD'S that I made of her favorite show tunes. I questioned what she ate, if she took her vitamins and what were the plans for the day.

There were times when I was so frightened and hurt since I was not able to just jump in my car and rush to take care of her. Once, when she was in the hospital in rehab I spoke to the physical therapist who told me that my mother was not following instructions. My answer was "how could mom possibly remember what you just said since she has Alzheimer's." Hearing the response "oh I didn't know she had dementia" was upsetting since hospitals are not required to list the disease on the patients chart.

I once received a phone call from the First Response that mom's neighbors reported her "just sitting" outside her apartment on the curb. Her caregiver left for the day and because of confusion mom went to sit outside to wait for her. You would think that one of her neighbors would have just brought her back into her home. Maybe they were frightened or afraid of "catching" Alzheimer's. After all these years of knowing her how could they now just shun her like this?

So with deep thought my question is, am I any less of a daughter than the others since I am a long distance caregiver? Or do I feel less pain or love my mother any less? Thankfully for me I do have the answer.  My love for her is as deep as the bottom of the sea and as vivid and bright as all the stars that light up the universe. She is my mother and I am always her daughter.



MY MOM MY HERO book is dedicated to the people we love.
Available on Amazon & Kindle & Audio

Courtesy: http://mommyhero.blogspot.in/2016/01/life-of-long-distance-caregiver.html 

MONEYLIFE: Assisting Those Who Cannot Look after Themselves

India has an acute shortage of elder care and assisted living facilities for senior citizens. Here is an initiative to bridge this gap.

Four years ago (2010), we wrote about Silver Innings Foundation and its not-for-profit initiatives to help senior citizens on a variety of issues. A lot has happened since. Sailesh Mishra has set up A1 Shehanjali, the social enterprise of Silver Innings (now a registered trademark), an assisted living elder care home for people suffering from dementia, Alzheimer’s or Parkinson’s and the very old.

It is a tough job and the soft spoken and affable Mr Mishra, founder of Silver Innings, a social enterprise, and Silver Innings Foundation, an NGO, is the first to admit it. “It isn’t as easy as advising people about how to care for elders; all you need to keep in mind is to make it a home with a heart,” he says.

Mr Mishra created this home after six years of running Silver Innings which helps and guides senior citizens on all aspects of their lives. A1 Snehanjali finally started in August 2013. Snehanjali, means a gift of affection and this is what he tries to inculcate in the care of elderly residents at its scenic Nalasopara (west) care-home, 50km from Mumbai. “At A1 Snehanjali, our mission is to help elders and their family members to overcome the challenges of ageing and show them the way to transform lives to mitigate loneliness, helplessness and boredom and live with dignity in their silver years.”

The home admits those above 55 suffering from dementia, Alzheimer’s, Parkinson’s and those who require assistance but NOT constant medical intervention provided by nursing homes. A1 Snehanjali follows a lengthy admission process to ensure that elders who come to their home are not dumped. A1 Snehanjali’s counsellors visit the homes of the elderly to find out more about them and their family situation before admission. According to Mr Mishra, 36 admissions were rejected on suspicion that they were cases of dumped, third stage of Alzheimer’s and who required nursing care. A1 Snehanjali insists on monthly visits by the resident’s family after admission. “We do not want to encourage people to be a part of our home if they do not really require it,” he says. At the moment, A1 Snehanjali has five residents.

It provides facilities like provision of nutritious food, medication management, bathing and dressing, incontinence care, weekly medical check-up and transportation for doctor visits, three vegetarian meals a day, laundry services, TV and music and 24x7 access to the attending staff.

What does it cost to stay at A1 Snehanjili? There is a deposit of Rs3 lakh, including a non-refundable donation of Rs50,000 to Silver Innings Foundation (NGO); interest-free refundable security deposits of Rs1.5 lakh and medical emergency fund of Rs1lakh payable to Silver Innings (Social Enterprise). The monthly fees depends on the level of care required. The basic fee is Rs30,000/pm including food. It does not include medicines, toiletries, diapers and special medical treatment.

It also offers a ‘respite stay’ of one to three months on payment of a deposit and costs.

“We live in a society which has replaced nani (maternal grandmother) with NANNY. We need to empower society to Engage the ‘Age’ing by showing the youth a mirror of their own future, says Mr Mishra. He hopes to achieve this by encouraging young people to volunteer, act as change-makers and to make donations to help it function smoothly.

Donations to the Silver Inning Foundation are exempt under Section 80-G of the Income Tax Act.

A1 Snehanjali

A1 SNEHANJALI Elder Care Home

Marciana Bungalow, D’silva Nagar, Nala Village, Nalasopara West,  Taluka Vasai, Dist. PALGHAR, Maharashtra - 401203

Contact No : 91+9323919145

Email Id: a1snehanjali@gmail.com; silverinnings@gmail.com

Website: http://a1snehanjali.com

http://silverinningfoundation.org/

Courtesy MONEYLIFE : http://www.moneylife.in/article/senior-citizens-assisted-living/37674.html

Dare to Remember: World Alzheimer's Month Mumbai #WAM2015 Report

September 2015 is the Fourth Global World Alzheimer’s Month™, an International Campaign to raise awareness and challenge stigma. The impact of September’s campaign is growing, but the stigmatisation and misinformation that surrounds dementia remains a Global problem. The theme for World Alzheimer’s Month 2015 was “Remember Me”. Encouraging people all around the world to learn to spot the signs of dementia, but also not to forget about loved ones who are living with dementia, or those who may have passed away.

On the occasion of World Alzheimer’s Day on 21st Sep 2015 Silver Inning Foundation and ARDSI Greater Mumbai chapter in association with Sophia College, Pushpa Ma Foundation, Eisai Pharma, The Metrognome, TISS, Nirmala Niketan College of Social work, Silver Innings Helpline, Nair Hospital Occupational Therapist(OT)Dept , Bhaktivedanta Palliative Care and ‘A1 Snehanjali’ assisted living elder care home, held events for the whole month for #WAM 2015 International World Alzheimer’s Month Programme, to create awareness about Dementia and Alzheimer’s in city of Mumbai and nearby area.These events were FREE and Open for Family members, Students, Counselors, Medical and Social Work Professionals, Person suffering with Dementia / Alzheimer’s, Senior Citizens & Interested individuals, with Prior Registration ONLY.

Following Events were organised pan Mumbai:

Every Week a Awareness Video made by TISS Students was released on Youtube, Total 5:

1) Heart Remembers But Mind Forgets #WAM2O15 : https://youtu.be/RQS6P7MeyQA

2) ‘Wrong Move’ : World Alzheimer Month Video #WAM2015: https://youtu.be/-DzmmsT4d-E

3) ‘LOST FATHER’ World Alzheimer’s Month 3rd Video #WAM2015: https://youtu.be/zMJQ21e4SQk

4) ‘Walk With Me’ #WAM2015 World Alzheimer’s Month Video : https://youtu.be/oQ0LhlshBvI

5) ‘Blurred, Not Wiped Out’ #WAM2015 Video for World Alzheimer’s Month: https://youtu.be/NF3tzQel1WE

Wed 9th Sep : Talk with Students on Alzheimer’s Awareness was organised by Ms. Mona Mishra of Silver Inning at St. Joseph College, Nalasopara west at 9.30am to 10.30am. Around 350 students participated

Fri 11th Sep : Talk on ‘Institutional Holistic Care for Dementia Care’ by Sailesh Mishra at GERON National conference at Varodara. Around 150 Professional participated.

Mon 14th Sep : Talk for Students on Elder Women and Alzheimer’s Awareness by Sailesh Mishra, Founder Silver Inning at Sophia College, Warden Road, Mumbai. 25 Students Participated

Mon 14th Sep : Full day Reiki Level 1 Learning for Caregivers by Grand master Hariharan Iyer at A1 Snehanjali Elder care home, Nalasopara west . 13 People participated.
Mon 14th , Tue 15th and Wed 16th Sep : Memory Camp was held by Eisai Phrama at Dada Dadi Park, Veer Sawarkar Udyan, L .T. Road, Pushpa Ma Foundation, Borivali west – 5pm to 7pm. Around 150 Senior Citizens Participated.

21st Sep World Alzheimer’s Day, Silver Innings FC ‪#‎Youth‬ ‪#‎Football‬ Team Dedicates its Win and Pledges its Support to People Suffering with ‪#‎Alzheimer‬’s ‪#‎Dementia‬ and their Family members. ‬‬‬‬

Tues 22nd Sep – Walkathon – Memory Walk at Dada Dadi Park, Veer Sawarkar Udyan, L .T. Road, Pushpa Ma Foundation, Borivali west – 5pm to 7pm & Talk by Shilpa Chandawarkar (Family Caregiver). Approx. 300 Senior Citizens participated

Tues 22nd: Talk with Senior Citizens Residents and Satff of A1 Snehanjali Elder care home, Nalasopara west by Dr. Suresh Patil (Psychiatrist) Nalasopara west. 10 Staff and 9 Residents participated.

24th Sep ‪#‎Bollywood‬ Superstar ‪#‎VivekOberoi‬ Supported World Alzheimer’s Month September 2015 Program at Govt. of India Prog in Mumbai‬‬
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Fri 25th Sep YWCA Elder Women Awareness Event With Fun and Games: 2pm to 4pm at Chacha Nehru Park, Model Town, Near RTO Bus Stop, Andheri West in association with YWCA and Nair Hospital Occupational Therapist(OT)Dept. 15 Senior Citizens Women participated.

Sat 26th Sep Awareness session for Students of Royal College of Science, Arts and Commerce, Mira Road was taken by Dr. Vineeta Sharma and Team of Bhaktivedanta Palliative Care. Around 65 Students Participated.

Mon 28th Sep “Alzheimer’s Awareness For Students” at 10am to 11.30am at St. Joseph Junior College, Nandakal, ‪#‎Nalasopara‬ west was taken by ‪#‎TISS‬ MSW Students. 160 Students participated ‬‬

Wed 30th Sep “Alzheimer’s Awareness For ‪#‎Seniorcitizens‬ ” session was held at 4.30pm to 5.30pm at Nanbhat Church Senior Citizens Group, Nanbhat Church, ‪#‎Nalasopara‬ west By Mona Mishra and Jenet Faras. Approx 85 Senior Citizens Participated ‬‬
At every Event a Alzheimer’s Information Hindi Leaflet was distributed

The efforts by Silver Innings in raising awareness about Alzheimer’s have been relentless this month and before this month too. It’s team will continue tireless work afterwards also at national and international level too. Using innovative and unique ideas and efforts to raise awareness and aleeviate suffering of the affected elderly. As a Silver Innings team member met with Marc Wortmann, Executive Director, Alzheimer’s Disease International HQ, London and Team. This meet will give chance to explore new avenues and to share, learn and network for the cause of #Alzheimer’s and #Dementia. Also the team member brought a life-like infant doll from Care, Singapore, which was christened ‘Baby Chintu’. This innovative use of Doll Therapy amongst the A1 Snehanjali residents was effective in promoting healing and patients look happier and are more expressive.