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The Compassion Box

A way for the caregiver/s to align people in their micro environment for gaining support and having normal social interactions.

Photo of Mansi Grover
27 24

Written by

Who is your idea designed for and how does it better support family caregivers as they care for a loved one with dementia?

The Compassion Box focusses on the 'social wellbeing' of the caregivers. It's a toolkit which the caregivers may use to generate awareness & sensitise family, friends, neighbours & other people (shopkeeper vendors, bankers, maids etc.) ,who are part of the daily interaction circle of the caregiver & patient's family. It is full of bite-sized yet nuanced information about Dementia in the form of artifacts like accordion leaflets, origami toys, bookmarks, tote bag, flash cards, calendar etc.

In India, more than 4.1 million people above the age of 60 get affected with Dementia and only 1 out of 10 get diagnosis, treatment and care

Also almost all persons with Dementia live at home and are cared for by family members. Caregivers could be the children, siblings, spouse or even distant relatives. Most caregivers have no idea what they need to do and they face a lot of difficulties as there is extremely poor awareness of Dementia in the society, which creates a lot of misinformation, myths and stigma.

Poor awareness of dementia affects how care is perceived and given to persons with dementia. People who are not aware of dementia assume it to be the same as ageing. This affects the way they support and treat persons with dementia.

  • Patients are criticised ('Crazy", 'Stubborn', 'Not there' etc. are some common adjectives)
  • Families are blamed for not caring well enough (' Cruel', 'Greedy', 'Negligent' etc. are common accusations)


Some interesting data on dementia awareness in India is available from the 10/66 Dementia Research Group. To quote,

"Behavioural symptoms of dementia; wandering, calling out, making accusations; may be taken by outsiders as prima facie evidence of neglect or abuse. Caregivers then face a double jeopardy, the strain of care heightened by the stigma and blame that attaches to them because of the disturbed behaviour of their relative."

Poor awareness also results in delayed or absent diagnosis. So families have to care for the persons with dementia, without benefit of information, treatment, or caregiving training or resources.

More details can be found here: Dementia in India

In light of the above lamentable and feeble situation, this idea aims to spread awareness in a caregiver's micro-environment, the immediate circle of people around them, in the hope of gaining support and compassion, to foster their well-being for sustaining long term care. 

The Compassion Box is a visual and analog tool-kit which can be tailored to the people around the caregiver in terms of cultural sensibility, demographics, language, literacy level and relationship with the patient. 

In my opinion, information disseminated in the form of graphic artifacts, interactive souvenirs et al holds the promise of firstly appealing to the people at large and holding their attention as well. An interesting tote bag can become a conversation starter. And that's what we want, to start talking about it. Create cognizance of this disease by giving it the attention it warrants and spawn a mindfulness towards both the dementia patient and the caregivers.

Considering the nascent stage of awareness of Dementia in India, it's fair to start simple and small. I propose to use familiar, inexpensive, tangible, everyday objects to make people understand the nuts and bolts of Dementia. Pithy yet expressive messaging, easy to comprehend and relate, which you see around you every now and then. In sight, in mind. 

  • Flash cards/Information cards
  • Bookmarks
  • Accordion leaflet
  • Mini booklet
  • Tote bag
  • Calendar
  • Origami toys
  • Postcards
  • Comics


The caregiver decides, which keepsake to give to each social group. A nod to cultural suitability and native language lend themselves elegantly to this noble cause. 



Some empty templates for own expression.


Communicating to kids can be done using origami toys that are very popular in India. Sheets of paper with instructions, to make boats, tic-tac-toe, hanging pocket etc. for example. It's a good way to engage and educate them at the same time. And coming from a family member, it would hold value. (Content inspired from youngdementia.uk)


What others can do for caregivers depends on what they know about dementia care and how much they are willing to learn. The hope is to create a chain reaction of good behaviour and kindness nudged by exposure to appropriate messaging, at a very personal level.

This kit could be made available at hospitals and pharmacies. Use recyclable paper or colourful rice paper to keep it affordable. 

Vending machines could also be used to print out information (in regional languages), like it's done for city travel maps. 

What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

For early experiment, I'd like to talk to caregivers and create a broad overview of the kind of support they need from the community, and the daily struggles they face. Interact with the medical fraternity to find out the most important stuff to include. Do a trial run with 10-15 people around the caregiver, to understand their emotional response to content, to more accurately predict how those emotions translate into action.

What skills, input, or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

Connect to the community of caregivers, doctors, and foundations to create opportunities for interviews, real world testing and feedback. Receive guidance from the OpenIDEO community on concept validation, design/type of artefacts, packaging of the compassion box and the messaging content. How to make it more visual and digestible and perhaps add a dash of humour.

How long has your idea existed?

  • 0-3 months

This idea emerged from

  • An Individual

Tell us about your work experience:

I'm a User Experience Designer working for a Home Appliances company in New Delhi. At work, I drive and plan experience design activities in accordance with product development. I research user needs, establish product strategy, tell user stories and build prototypes to validate design hypotheses.

27 comments

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Photo of Sameer Khan
Team

Hi Mansi Grover 

I very much like your idea and what you are doing. Typically such work is the government's responsibility but in various jurisdictions around the world we have to manage things more directly as responsible citizens rather than wait for a government agency.

Please get in touch with me if you'd like an introduction to dementia care specialists in NIMS and Apollo in Hyderabad and NIMHANS in Bangalore if you don't already have contacts there.

Here is a link to a company founded by a very close friend, Tina, in Waterloo Canada: http://www.mypasskit.com/

PassKit is a box with helpful resources for mental hygiene. She has been considerably successful in selling to universities in Canada. If you'd like to know more about her business model and journey I can connect you with her. Some of the challenges she faced were in logistics and distribution that she eventually overcame so you can learn from her.

Here are few more resources about dementia that can be useful: https://goo.gl/FoKbBD

I was in Hyderabad last November testing the audio only version of BrightGuide with visually impaired persons and will be working there again in winter 2019. Please let me know if you'd like to test BrightGuide in your community.

Thank you.
Best,
Sam

email: sam at brightguide dot ca

Photo of Mansi Grover
Team

Hi @Sameerkhan ! I'm really glad you think my idea is worthy and thanks a ton for all the links and information. Super helpful.
I shall mail you offline to take this forward :)

Photo of Aisha Adkins
Team

This is a really wonderful idea, Mansi!

So many people are ignorant to the behaviors associated with dementia. Making business owners, clerks, waiters, and others with whom dementia patients and their families interact aware of these challenges is such a difficult task, but I believe The Compassion Box could be of great help!

Is The Compassion Box available outside of India or do you have plans for expansion?

Photo of Mansi Grover
Team

Hi Aisha!
Thanks a lot for applaud. My initial thought was based on making something for developing countries like India, Africa etc. due to the very low levels of awareness and resources here. For the developed countries, the content will vary, to better accommodate their socio-cultural and demographical sensibilities. Maybe we could have variants like basic, advanced etc. along with region, language etc. filters.
I would love to hear your thoughts too on this. If you have ideas for reach, evangelism and making it global.

Photo of Aisha Adkins
Team

Hello Mansi!

Your scope makes a lot of sense considering the limited awareness and resources. Perhaps there is a way to partner with programs in developed nations in order to fund evangelism efforts in India, Africa, and other developing nations. I would love to stay in touch, so please feel free to contact me via email at hello@ourturn2care.com!

Photo of Mansi Grover
Team

Thanks Aisha, I just dropped an email.

Photo of Sunaina Khurana
Team

I like this idea for its simplicity and how it is easy to access and understand for everybody and doesn't need any technical understanding. Simple everyday objects that we are familiar with and are available as constant reminders in our surrounding instead of an app perhaps pinging you constantly.

Photo of vishwaksen shekhawat
Team

I love it!
It's a simple solution which has a lasting impact on perceptions leading to a more appropriate and may I say compassionate behaviour.

Photo of Atula
Team

In my opinion this seems to be a practical, economic and effective solution, because most challenges are born out of a lack of awareness and through this idea, you would be addressing the awareness of those who are directly affected by the condition.
The absence of compassion from the caregiver's end, is never deliberate. ..it is observed because they don't know any better, as to what to expect and how to deal with it. A lot of times, the caregiver/s, being a family member/s of the patient, is/are also affected emotionally by what they see their loved ones go through...this could result in frustration and helplessness. Your solution begins to address the awareness of the entire spectrum of people that might be affected by dementia. I hope we can find a way to implement this idea! Here's wishing you the best!

Photo of Mansi Grover
Team

I totally agree with you. The absence of compassion is never deliberate. My aim was to deal with the ignorance in a simple, familiar, playful sorta way! Fingers crossed.

Photo of Shreyansh Chauhan
Team

Love the idea for its simplicity. It is easy to implement and has potential to impact the overall psyche of the patient. The tools can be customized according to the symptoms and support groups can be formed online to further scale acceptance of the idea. Reminds me of the buzz that was created when an entire town learned sign language to surprise a deaf inhabitant. We are aware that community actions have the might to gain virality- success stories can be picked up by local news, tie ups can be initiated with clinics, even NGOs can be approached to spread it. Compassion box is a holistic solution as it impacts the daily interactions of the patient and it is multi-faceted as it can impact different kinds of interactions.

Photo of Mansi Grover
Team

Thanks Shreyansh for picking up the essence of this project! Hopefully, it won't remain just a concept.

Photo of Shannon Peter
Team

It's always OK, until it happens to us.

This is a great idea. I say this because my grand mother went through quite a bit. We were much younger back then, however, I remember how she always wanted another cup of tea. She was perennially hungry and we'd keep wondering what was going on. Of course adults managed the situation well, but the diagnosis was clearly absent.

My grandmother wanted to feel valued. I think we missed that. She wanted to talk. She wanted to express herself. We didn't know how. We didn't see the signs. All of us will eventually get older, senile and less productive.

This is a step in the right direction. Good work, Mansi. I'll be keeping a close watch on your progress, which is already quite mature.

Photo of Mansi Grover
Team

Thank you for sharing your story.

Photo of Gajendra
Team

Thought provoking ! Thank you Ms. Grover for ideating and making people like me who are caught in the routine monotonous storms (or whirlpools if you may), to step back and think about compassion for care givers.
In Indian society, any mental or psychological ailment is associated with a stigma, mainly because it also tends to be associated with genes. Something which runs in the family. OCD, Bipolar, Schizophrenia and even Dementia are shoved into a closet. Even educated families resort to alternative solutions through God-men and strange rituals. In this context a Care giver goes through a far more greater trauma as compared to a care receiver, especially since s/he is also pursuing a parallel normal life.
A compassion box which can start conversations, create awareness and gently nudge the microenvironment towards acceptance is much needed. Awareness, acceptance and understanding that anyone can be affected and that mental illness are perfectly normal by the micro environment, is half the battle won. If we are able to take the stress off from the care giver, the relationship between the care giver-receiver and the micro-environment would improve, thereby helping the receiver to respond better to the treatment !!!
India needs more awareness and acceptance which this compassion box can initiate. Simple ideas can start a revolution.
It’s time for all of us to take the plain colourless paper within us and fold it into an Origami of a butterfly and help start many conversations of Compassion !! Once again, Thank you Ms. Grover. Wishing you success !

Photo of Mansi Grover
Team

Thank you thank you for this wonderful appreciation! I'm so glad this idea resonates with you. Your feedback has inspired me to focus more on Origami and find novel uses for this simple Japanese art.

Photo of Mansi Grover
Team

I am also thinking a lot on the emotional aspect. Emotion is powerful. Designers can have massive impact when we’re able to reduce fear or anxiety for a user — or better yet — replace it with trust, comfort, even joy. Feel free to share your thoughts on this, with me.

Photo of Kate Rushton
Team

Hi Mansi,

It is great to have you in the challenge. Have you thought about how this solution would scale?

Photo of Mansi Grover
Team

Thanks Kate Rushton , I'm very excited to be here and make a meaningful contribution. So I have some preliminary ideas on scaling which I need to flesh out more. To me it entails 2 things:
1. Global accessbility
2. Reach and evangelism

Considering the fact that western countries have massive education programs and resources devoted to Dementia as part of their healthcare program, the content of the Compassion Box will vary from what will be available in developing countries like India, Africa etc. The sensibilities of a person from a suburb in Bihar will be very different from someone living in London. It may make sense to reach out through the WHO network and budgets, for example. One basically needs channel partners who have NGO budgets.

For India, working with something like NIMHANS/VIMHANS may be a feasible option as distribution partners. Tap into corporate or pharma companies CSR budgets for funds.

Photo of Rupika Kumar
Team

I really like this approach of tackling this problem in such a light and playful way. The approach adapted by Mansi not only provides the relevant information required to understand the problem but also the candid, informal, lighthearted & humor oriented direction sort of acts on the stigma associated with this problem in our country. I love the little games and stationary items she has made as well. Well Done!

Photo of Mansi Grover
Team

Thank you so much for the encouragement :)

Photo of avnish gautam
Team

Great work Mansi !
It seems you have studied it very closely, which is very evident from you observations and the the best part is the way you have broken the entire problem into small bits and pieces.
What I could also see in this situation, "Awareness" is very important aspect, and your solution genuinely takes care of it. In addition, it also covers a broader audience within the micro and the macro environment of the caregiver and the Carerecipient.
Highly impressive.

Photo of Mansi Grover
Team

Thank you so much for the appreciation and encouragement:)

Photo of Biraj Sarkar
Team

Congratulations ! This is a great direction for India given how the generation of people in question who would be suffering from it, would likely relate more to tactile and familiar traditional interfaces.
Love the use of caricatures, its a quick, fun and simple medium to convey the information in a relatable way, and the kids paper craft is a great way to engage the family in the responsibility of taking care of the patient.
The only part I am a bit skeptical of is the use of the bag - These spaces like bags and accessories are useful in communicating messages, but one must be cautious what message we are communicating. The drawing on the 'tote bag' might be a bit of an announcement that you have someone close to you with dementia (since it talks of how to recognize it), which may be something the user may want to keep away from the general public. However the message on the bag could instead serve to increase acceptance of the disease as a disease (in the Indian social environment).
But Great work! looking forward to see where this goes!

Photo of Mansi Grover
Team

Thanks Biraj! That’s great feedback, gives me a good direction for improvement.

Photo of OpenIDEO
Team

Hi Mansi!

Congratulations on being today's Featured Contribution!

Photo of Mansi Grover
Team

Thank you so much! It's an honour.