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Dementia: Beyond The Cold Facts

“But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.” 

These are poignant lines from a bestseller, ‘Still Alice’. It is a moving account of a 50-year old Harvard professor who suddenly experiences forgetfulness; it is diagnosed as early onset of Alzheimer’s. It brought back memories of my father’s struggle with the disease when he was in his late eighties.

The novel, later adapted into a movie, featuring Julianne Moore playing the protagonist, vividly depicts the confusion she experiences when memory begins to fail. It is also a heart-rending narrative of how helpless the family feels.

What was most striking was how little I knew when these symptoms first showed up in my father. A neighbour brought him home when he found him a bit lost and unsure about where he lived. We consulted a neurologist soon after. Old age was blamed and a few medicines prescribed.

Over the course of the next few years and many stays in the hospital, we weren’t much wiser and his condition deteriorated.

In Being Alice, the consulting doctor, not only asks all the mundane but vitally important questions, but also gently and with compassion, guides the family on the do’s and don’ts.

That’s what is painful and agonising. With early diagnosis, understanding the symptoms and the care that needs to be provided, we could have made a difference to the quality of my father’s life. Even if it was just a bit.

Importantly, perhaps the layer of dignity he was robbed off, wouldn’t have happened.

Understanding Dementia

According to the World Health Organisation, “Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities.”

Importantly, while dementia mainly affects older people, it is not a normal part of ageing. It has a physical, psychological, social, and economic impact, not only on people with dementia but also on their carers, families and society at large.

The Numbers Are Huge

Worldwide, around 50 million people have dementia, and there are nearly 10 million new cases every year. Alzheimer’s disease is the most common form of dementia and may contribute to 60–70% of cases. The bad news is that the number of people with dementia is projected to reach 82 million in 2030 and 152 million in 2050. The Alzheimer’s Association estimates that more than 4 million people in India have some form of dementia.

The costs too are huge. In 2015, the global societal cost of dementia was estimated to be a staggering US$ 818 billion, equivalent to 1.1% of global gross domestic product (GDP). It is likely to go up to US$ 2 trillion annually by 2030.

Beyond the numbers are untold stories of pain and suffering, neglect and abuse, stigma and a sense of helplessness and the loss of dignity.

Dementia Sets In Gradually

The early stage of dementia is often overlooked, even by doctors, because the onset is gradual. Common symptoms include forgetfulness, losing track of time and becoming lost in familiar places. As the disease progresses, the signs and symptoms become clearer e.g. becoming forgetful of recent events and people’s names, increasing difficulty with communication and repeating questions, needing help with personal care etc. Dementia then progresses to a stage of near-total dependence, inactivity and sometimes aggressive behaviour

Early Diagnosis Is Critical

Sadly, currently, there is no treatment available to cure dementia or to alter its progressive course. However, much can be done to support and improve the lives of people with dementia and their carers and families. What is important, therefore, is an early diagnosis to ensure timely and optimal management.

Reducing The Risk – Awareness Is The Key

While age is the strongest known risk factor for dementia, it is NOT an inevitable consequence of ageing. It does not exclusively affect older people.

As per new WHO guidelines, the risk of dementia can be reduced by regular exercise, not smoking, avoiding alcohol, controlling weight, healthy diet, and maintaining healthy blood pressure, cholesterol and blood sugar levels. Creating awareness would, therefore, be extremely important.

New WHO guidelines

The good news is that there is greater attention to the issue globally. The recent WHO guidelines recommend that countries create national policies and plans for dementia. An important suggestion is about support for carers of people with dementia.

Looking Ahead, With Compassion

In closing, there is a need to step on the pedal. Dementia will not wait, indeed the numbers are going up. It is here and now. For those affected by the disease and the families and caregivers. They are living the disease today. It is critical that we respond urgently. With love. And compassion.

21 September is the World Alzheimer’s Day

Rajeev Varma is a freelance writer on health issues and a life coach. He is former Senior Communications Officer with WHO India. Views are personal.

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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