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‘Political involvement translates to advocacy and awareness’

Our campaign partner, Silver Innings Foundation, was thrilled to host a local municipal councillor at their Alzheimer’s Day event yesterday.
by The Editors | editor@themetrognome.in
Yesterday, on the occasion of World Alzheimer’s Day (observed globally every year on September 29), the Silver Innings Foundation celebrated a few events at their newly-opened indept attentionassisted elder care facility at Nala Sopara. The facility, A1 Snehanjali, held an interactive talk and play, played an interactive PPT and showed an inspiring video.
“A total of 55 people participated from various churches, senior citizens associations, women’s NGO Sakhaya, students from Nirmala Niketan College of Social work and residents and staff of A1 Snehanjali. Interestingly, the programme was inaugurated by chief guest corporator Rajan Nayak of Vasai Virar Municipal Corporation,” said Sailesh Mishra, Founder, Silver Innings.
He added, “It is important for persons from the political sphere to associate with activities pertaining to elder care and disorders such as Alzheimer’s and dementia. Their participation becomes an important support for any advocacy and public awareness campaigns. If we can sensitise elected public representatives and politicians, the awareness movement can easily penetrate at the grass root level.”
Local churches in the Nala Sopara (west) area also participated by sending two representatives each.
(Pictures courtesy Silver Innings Foundation)
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When I lost my father to Alzheimer’s

The disorder can wreak havoc with a person’s life, and he or she can wither away before your eyes.

 

Humra Quraishiby Humra Quraishi

Those affected by the Alzheimer’s disorder change drastically, beyond recognition. Their memory becomes ‘polka dotted’, with only little islands of memory remaining. With pathological changes in the brain beginning to take place, the affected person’s lifestyle and personality, and everything else connected with them undergo a sharp transformation. The affected person may get into a shell or turn aggressive, or could sit looking lost and forlorn. And as the memory cells deteriorate and decline, the affected person finds it difficult to recognise his or her children.

My family didn’t have the slightest clue about the Alzheimer’s Disorder (AD) until it struck home. My father, Iqtidar Ali Khan, started displaying symptoms soon after his retirement. He began forgetting mundane things and started slipping into depression. At times, he would sit all by himself, looking lost and forlorn, or else sit sobbing. When we would sit beside him and hold his hand, or hug him, he would feel reassured. We didn’t realise that there was something more to the apparent bouts of depression and forgetfulness.

Then, one day, my father got lost in the park. More such incidents followed. Though he had been driving for decades, he suddenly couldn’t drive with the same confidence. Then he lost the sense of roads and familiar settings.

Within weeks, my handsome and well-dressed father had changed. Earlier, he had been very particular about going to the club alzheimersfor tennis or going on long drives, but within a short period of time, all that changed. He seemed lost, shutting himself into a shell…his memory shrank with each passing day. In effect, this is what Alzheimer’s roughly all about: shrinkage of the memory cells and the consequent degeneration.

My father passed away in 1996, but a couple of years before that, he couldn’t recognise us. He just stopped recognising us. His eyes conveyed restlessness, as though he wanted to say much or as if he was trying his utmost to connect with us and reach out. Sometimes he would murmur sentences and recall some incident, long gone by; something from his childhood or young life, maybe. Occasionally he would burst into tears, sob like a baby, and even go looking for his dead mother or his siblings.

One incident, in particular, shattered us. We saw him looking for something he seemed to have lost. He moved about restlessly, peering under beds, behind sofas and doors. When we asked him what the matter was, he spoke with restless impatience, “Where are my children? I’m looking for them. They’re lost! Find my children…are they lost or what!”

We were standing right there, staring at him in utter disbelief, but he couldn’t recognise us.  He had been a doting father, helping us not just with our homework but even during the emotional turmoils of our lives. Always a family man, he would wait at the dining table and not eat before all of us had assembled for dinner or any meal. An engineer by profession, he would take us on his tours when he would supervise the construction of the various dams around Jhansi town.

I cannot describe how difficult and traumatic it is to see these painful changes. It is important to mention here that the role of the immediate family is crucial. The only time my father would look a bit peaceful was when we sat close by, holding his hand, clasping him as if to reassure him. Human bonding takes care of much of the pain that an AD-affected goes through.

(Pictures courtesy thinkprogress.org, www.cnn.com. Images are used for representational purpose only) 

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10 warning signs for Alzheimer’s

How do you know if your loved one is suffering from dementia or Alzheimer’s? Use this checklist to know more.
by Sailesh Mishra, Silver Innings Foundation and Alzheimer’s Association National Office, Chicago

Dementia is a general term to denote a progressive degenerative disease of the brain resulting in loss of memory, intellectual decline, behavioural and personality changes. Mostly older people above 60 years of age are affected by this condition. In Latin, ‘dementia’ means irrationality, and this disorder results in a restriction of daily activities, and in most cases, leads in the long term to the need for care. There are many forms of dementia, the most common one being Alzheimer’s disease.

alzhiemersAlzheimer’s knows no social, economic, ethnic or geographical boundaries and affects people throughout the world. It is estimated that every seventh person in world will suffer from some form of dementia.

There is no cure for the disease, but some treatment and therapy is available to stabilise and arrest the progress of the disease. Here’s what you should watch out for if you think a loved one may be suffering from dementia or Alzheimer’s, and what is normal behaviour:

#1) Memory loss that disrupts daily life

One of the most common signs of Alzheimer’s is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (such as reminder notes or electronic devices) or family members for things they used to handle on their own.

What’s typical? Sometimes forgetting names or appointments, but remembering them later.

#2) Challenges in planning or solving problems

Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.

What’s typical? Making occasional errors when balancing a checkbook.

#3) Difficulty completing familiar tasks at home, at work or at leisure

People with Alzheimer’s often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the alzheimer'srules of a favourite game.

What’s typical? Occasionally needing help to use the settings on a microwave or to record a television show.

#4) Confusion/disorientation with time or place

People with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.

What’s typical? Getting confused about the day of the week but figuring it out later.

#5) Trouble understanding visual images and spatial relationships

For some people, having vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining colour or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realise they are the person in the mirror.

What’s typical? Vision changes related to cataracts.

#6) New problems with words in speaking or writing or problems with language

People with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a “watch” a “hand-clock”).

What’s typical? Sometimes having trouble finding the right word.

#7) Misplacing things and losing the ability to retrace steps

A person with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time.

What’s typical? Misplacing things from time to time, such as a pair of glasses or the remote control.

alzheimer's #8) Decreased or poor judgment

People with Alzheimer’s may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean.

What’s typical? Making a bad decision once in a while.

#9) Withdrawal from work or social activities/loss of initiative

A person with Alzheimer’s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favourite sports team or remembering how to complete a favourite hobby. They may also avoid being social because of the changes they have experienced.

What’s typical? Sometimes feeling weary of work, family and social obligations.

#10) Changes in mood and personality

The mood and personalities of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.

What’s typical? Developing very specific ways of doing things and becoming irritable when a routine is disrupted.

The Metrognome is committed to the cause of Alzheimer’s and dementia awareness through all of September 2013. If you want to share information or anecdotes related to Alzheimer’s or dementia, write to editor@themetrognome.in and we will feature it.

(Pictures courtesy www.webicina.com, www.firstpost.com, www.thehindu.com, www.indianexpress.com)

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Observing World Alzheimer’s Day in Mumbai

Two Mumbai-based NGOs and a college held events for senior citizens at Borivli and Malad on Saturday. Here’s a roundup.
by The Editors | editor@themetrognome.in

If more opportunities are provided for senior citizens to not just meet others of their age group, but also those much younger than them, the results can be electric.

This was amply demonstrated in Borivli and Malad on Saturday, September 21, as the Silver Innings Foundation and the Mumbai Chapter of the ARDSI held interactive events and talks for senior citizens at Nani Nani Park, Borivli, and St Thomas Orthodox Church, Malad. Over 450 elders participated in both events, and responded warmly and positively to the informative talks, street plays by Tata Institute of Social Sciences (TISS) students, memory checkup sessions and the final laughter therapy session. “More than 50 per cent of the attendees were women,” said Sailesh Mishra of Silver Innings. “We even had brain games for them. Overall, both sessions were about 1.5 hours long.”

He added that the key collaborators on the events – Pushpa Ma Foundation and the Church – were excellent partners to have for the project. “The community, especially the church support for such awareness [of Alzheimer’s and dementia] will make a huge impact,” Sailesh explained. “More such spiritual organisations should be involved in India for creating awareness of social issues. It becomes easier for outreach.”

See pics of the events below:

The Metrognome has partnered with Silver Innings and ARDSI for Alzheimer’s Awareness month for all of September 2013. If you want to share information, event details or a personal anecdote related to dementia and Alzheimer’s, please send it to us at editor@themetrognome.in and we will feature it.

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Fun and learning with senior citizens

The city-based NGO Silver Innings Foundation organised events for senior citizens at the YWCA yesterday. Here are some event snapshots.
by The Editors | editor@themetrognome.in

The Silver Innings Foundation, which works in the field of elder care, counselling and assisted living for senior citizens, among other things, yesterday organised a series of activities for elders at the YWCA, Andheri. A few students from Nirmala Niketan College of Social Work  also participated in the events.

The Foundation’s events were a good success, with about 50 elders participating. Says Sailesh Mishra, Founder President, Silver Innings, “We did a street play, then an interactive PPT talk. We also conducted a memory checkup and held memory games and exercise for the elders. There was also a sharing session by family care givers, and the best part was the dance in which everybody took part!”

See pics of the events below:

The Metrognome is committed to the cause of Alzheimer’s and dementia awareness in India. If you have an experience or information to share on Alzheimer’s or dementia, do write to us at editor@themetrognome.in and we will feature your story.

 (Pictures courtesy Silver Innings Foundation)

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India will need several more Alzheimer’s caregivers: Report

The just-released World Alzheimer Report 2013 reveals that the global Alzheimer’s epidemic has created shortage of caregivers around the world.
by Alzheimer’s Disease International (ADI) and Bupa

The World Alzheimer Report 2013 Journey of Caring: An analysis of long-term care for dementia,  released yesterday, calls for Governments around the world to make dementia a priority by implementing national plans, and by initiating urgent national debates on future arrangements for long-term care.

Alzheimer’s Disease International (ADI) and Bupa commissioned a team of researchers, led by Professor Martin Prince from King’s College London, to produce the report.

dementiaThe report reveals that, as the world population ages, the traditional system of “informal” care by family, friends, and community will require much greater support. Globally, 13 per cent of people aged 60 or over require long-term care. Between 2010 and 2050, the total number of older people with care needs will nearly treble from 101 to 277 million. Long-term care is mainly about care for people with dementia; around half of all older people who need personal care have dementia, and 80 per cent of older people in nursing homes are living with dementia. The worldwide cost of dementia care is currently over US$600 billion (£395 billion), or around 1 per cent of global GDP.

The report states that more attention needs to be paid to maintaining and enhancing quality of life; helping those affected, and their families to ‘live well with dementia’.

Ten-fold increases in research funding are needed to re-energise the work on dementia prevention, treatment and care. This investment is essential to mitigate the impact of the global dementia epidemic on future long-term care needs, and improve quality of care. A key finding is that the number of dependent older adults will increase to 277 million by 2050, and half of all older people who need personal care have dementia.

India is likely to have a 100 per cent increase in dependent older adults.

The Report recommends that:

– Systems should to be in place to monitor the quality of dementia care in all settings – whether in care homes or in the community. Autonomy and choice should be promoted at all caring for alzheimer's patientsstages of the dementia journey, prioritising the voices of people with dementia and their caregivers.

– Health and social care systems should be better integrated and coordinated to meet people’s needs.

– Front-line caregivers must be adequately trained and systems will need to be in place to ensure paid and unpaid carers receive appropriate financial reward in order to sustain the informal care system and improve recruitment and retention of paid carers.

– Care in care homes is a preferred option for a significant minority – quality of life at home can be as good, and costs are comparable if the unpaid work of family caregivers is properly valued

– The quality of care in care homes should be monitored through the quality of life and satisfaction of their residents, in addition to routine inspections, as care homes will remain an important component of long-term care.

Professor Martin Prince, from King’s College London’s Institute of Psychiatry and author of the report, said: “People with dementia have special needs. Compared with other long-term care users they need more personal care, more hours of care, and more supervision, all of which is associated with greater strain on caregivers, and higher costs. Their needs for care start early in the disease course, and evolve constantly over time, requiring advanced planning, monitoring, and coordination.

“We need to value the unpaid contribution of family caregivers more, and reward paid caregivers better. We can build quality into our care systems, but to do so while containing costs and achieving equity of access for all will be a challenge.”

Marc Wortmann, Executive Director, Alzheimer’s Disease International said: “We need to value those that provide frontline care for people with dementia. This includes paid, as well as unpaid family caregivers, who share much in common. Governments need to acknowledge the role of caregivers and ensure that there are policies in place to support them.”

Dr Paul Zollinger-Read, Chief Medical Officer, Bupa, said: “An ageing population around the world means that improving dementia care and support is one of our generation’s greatest healthcare challenges – a challenge we must tackle. We’re calling on Governments around the world to make dementia a national health priority by developing national dementia plans.”

Read the full text of the report here: www.alz.co.uk/worldreport2013

The Metrognome is committed to the cause of dementia and Alzheimer’s awareness. This month, we’re covering the stories and statistics on dementia and Alzheimer’s that really matter. Do write to us at editor@themetrognome.in if you have information and anecdotes to share. 

(Pictures courtesy nightingaleseldercare.com, www.indianexpress.com. Pictures have been used for representational purpose only)

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