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
- Accordion leaflet
- Mini booklet
- Tote bag
- Origami toys
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.