There are many serious challenges faced by home caregivers that are not acknowledged and discussed openly. Lack of such discussion makes many caregivers feel isolated and unsupported. General advice given may be inappropriate and insensitive, It results in unintended silences because everyone assumes these issues are rare.
This presentation was made at the International Conference on “Advances in Dementia” & “XXI National Conference of ARDSI” held on 22nd, 23rd & 24th September, 2017 at Kolkata (India). It discusses four serious areas that pose extreme challenge using dementia home care in India as the context. Data is shared to show how serious and prevalent these are, and why we should not ignore these. The purpose of the presentation is to create some recognition around these under-discussed issues in the hope that this will enable creative approaches and better support. The four areas discussed are: Financial problems; Situations where caregivers have a past history of being abused; Lack of support to understand, believe, and begin acting on a diagnosis; and Lack of explanations and support for late-stage dementia care.