Awareness about dementia is very poor in India, and there is a lot of stigma attached to dementia. Caregivers are unable to speak about their experiences and problems, or share tips and suggestions, as this is often taken as “complaining” or “excuses to avoid duty.” Because of this, caregivers are unable to learn from each other’s experiences and find themselves alone and isolated. Many never get to know that there are others facing similar problems. They do not get to know of the simple yet effective caregiving techniques that can provide relief to them and the persons with dementia.
While some help is available through books and websites on dementia care, often caregivers in India are unable to relate to situations described in them because of social and cultural gaps. They find it useful to also share experiences of other caregivers in India.
As many caregivers hesitate to speak up, I have gathered together a diverse and extensive set of “caregiver voices” at my Dementia Care Notes website, as caregiver experiences drawn using interviews: Interviews with caregivers, volunteers and experts.
Being a blogger myself, I have also blogged extensively about my personal experiences as a dementia caregiver; my blog has around 200 entries, distributed over various categories. The categories related to my personal dementia caregiving experiences and related introspection are:
- Caring for mother
- Musings of a caregiver
- Other caregiver stories
Unfortunately, not too many caregivers from India have shared their experiences online, but some more links can be found at Caregiver Voices from the news.
In case you have any suggestions about other links I can include, related specifically to experiences of dementia caregiving in India, please contact me with the information.