Online resources in English and Hindi increase understanding of dementia and caregiving skills
The idea: When family members do not understand the impact of dementia and do not use the appropriate interaction and caregiving tools, everyone suffers unnecessarily. Swapna provides free resources and tools on the Internet, in both English and Hindi, that help caregivers understand the impact of dementia and improve their caregiving skills.
I am Swapna Kishore, and I live in India. I have been the primary caregiver for my mother (who had dementia) for over a decade. I am also a resource person for dementia care and I focus on helping family caregivers.
My mother's journey through dementia taught me a lot, starting right from the difficulties in getting a diagnosis which required repeated visits to multiple doctors.
Even after the diagnosis, I took time to understand how dementia was affecting her. Initially, I faced several challenges in our interactions, a situation made worse by poor dementia awareness around us. However, I am happy to share that our family crossed that hurdle. The later part of my mother's dementia journey was smooth; we enjoyed each other's company and had fun together, notwithstanding her ongoing and heart-breaking deterioration.
What I have noticed in my case and in the case of many families I have interacted with is this: We family members typically find it difficult to change our old patterns of interacting with the person who has dementia. We have memories of what the person was like earlier. We forget (or do not believe) that this person now faces an extremely challenging situation where even ordinary conversations and tasks are tough to handle. Without intending to, we burden the person with our unrealistic expectations. We don't realize we can adjust our lives to make things easier and more pleasant for the person. Our homes remain full of clutter and noises. We even "correct" wrong memories and argue with the person. Or we get upset or hurt assuming that the person is deliberately acting "difficult."
The situation can change dramatically once we appreciate and respect the person's difficulties, because we can then remember that we must use appropriate ways to communicate with and to help the person. We then find we can resume having enjoyable interactions with the person.
But alas, when family members do not understand the impact of dementia and do not use the appropriate interaction and caregiving tools, everyone suffers unnecessarily. Also, when dementia awareness is poor in society, people around the family do not understand the challenges that families face and do not support families; instead, they may be critical. Caregivers and their problems remain invisible in the society.
I strongly believe that access to timely and appropriate caregiving information can enable families to set up a suitable care environment right from the beginning. Such information helps families transform the home from a battleground and a depressing place to a relaxed space where the person's dementia is accepted as a fact and interactions become pleasant and enriching for the person and the family members.
Because of my conviction, in addition to being a caregiver, I became a trainer for caregivers, and began helping other caregivers. I set up a website designed specifically for dementia caregivers in India at Dementia Care Notes where I offer my understanding and insight on dementia and care for people with dementia. The website has a comprehensive section for "Caring for dementia patients," which includes a "Caregiver Essential Toolkit" that discusses topics like communicating with persons with dementia, helping them with daily tasks, handling difficult behavior, doing late stage care, etc. The site includes information on resources in India and presents a number of detailed caregiver interviews. Video resources are also available. Click here to view the videos.
I focus on supporting/ sharing ideas with caregivers living in societies where awareness is poor; my online resources use examples suitable for India and similar societies. To increase my reach, I have also created a Hindi version of the website and my youtube channel includes videos in Hindi.
As part of my sharing, I also blog (http://swapnawrites.wordpress.com) about my caregiving experiences and my musings on dementia, caregiving, and related topics. My blog helps me connect with other caregivers who often write in to exchange stories or share concerns. I have shared some of my thoughts and experiences as a caregiver on a video on youtube (see video embedded below).
Family caregivers can empower the person with dementia and make life easier and more pleasant for the person and for the entire family. To be able to do this, caregivers must emotionally understand how dementia could be affecting the person with dementia. They must remember to apply essential caregiving skills while interacting with the person. My website, blog, and videos provide free online resources for concerned family caregivers, and I hope they will prove useful to fellow family caregivers in their journey of supporting persons with dementia.
While these resources are mainly aimed at family caregivers, they may also be useful to volunteers who support caregivers as a resource they can point caregivers to, or use to understand some family care challenges.