OpenIDEO is an open innovation platform. Join our global community to solve big challenges for social good. Sign up, Login or Learn more

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

Join the conversation:

Comment
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 :)

View all comments