Swapna Kishore

Janet and Shikha first located me in July 2010 online (they were looking for caregivers). When they described their vision of “Caregivers Link”, I was both excited and intimidated because their scope covered all caregivers, and included setting up various information hubs and resource databases and whatnots.  I was happy to give them whatever help I could. As a dementia caregiver and volunteer, I was already sharing my knowledge and experience with other dementia caregivers using various forums but I was also acutely aware of the huge gap between the support systems that caregivers needed and what was available.

As per this report, over the last two years, the CGL team has consolidated its understanding of caregiver issues and has executed some projects and set up some resource bases. The progress is definitely not as dramatic as their vision, but CGL has acted in some areas and remains committed to this domain, and I appreciate that.

It is easy for someone who has not worked in the caregiver support area to underestimate the difficulty of contributing in this field. Truth is, it is very challenging to support an “invisible” caregiver community in a culture that does not recognize or respect this role, in an environment where relevant resources and services are scarce, scattered, poorly documented, and difficult to evaluate and consolidate. Many well-intentioned persons drop out when they see how tough it is to make a difference. Therefore, every volunteer effort counts, especially because these combined efforts form an overall framework that will enable future volunteers to contribute more easily. I see CGL’s efforts and progress in this context, and am glad they continue to work in this area and have plans for their future work.

As it is critical for the CGL team to decide on its direction and priorities, I am offering my thoughts on directions/ priorities for them to consider.

Engage and expand the CGL network using on-going updates and requests for help: This will improve CGL’s reach and also ensure that CGL derives benefits such as leads, resources, knowledge and perspectives from this network. In addition to newsletters and reports to inform people of its completed activities, I suggest CGL consider keeping people informed (even brief updates would work) of on-going work, so that concerned persons can provide relevant information or leads that CGL could integrate into projects it is executing. CGL can also explicitly ask for help. We can support CGL better if we know what CGL needs for its current and future projects.

Provide clarity on CGL’s scope and modality for supporting caregivers: We need clarity on how CGL shall interact with and to support caregivers of various types in the future– some support may be relevant for caregivers of all diseases, some may be relevant only for specific types of care situations. Also, we need to know their support modality–is it through resources available on its website, or also through personalized connections through email/ phone (and what sort of response time can caregivers expect from them)? This will enable us to decide when it is appropriate to refer people to CGL.

Strengthen forums for matching/ connecting caregivers, resources, and services: One role of CGL is acting as a connector between caregivers, resources, and services. This can be strengthened by establishing robust technical and physical means, such as systems to make any “matching” easier, and also “tracking” systems to ensure all inquiries and leads are followed up and closed.

Act as enabler for others who want to set up essential support systems, by providing knowhow and material: I note that CGL plans to create multiple support groups and also to train attendants. I suggest CGL focuses on becoming an “enabler” to others in these areas so that that more people benefit and CGL’s time and energy are not exhausted in providing benefit to a limited number of people. So, for example, instead of trying to train multiple batches of attendants, CGL can execute one or two prototype projects to design a model that agencies can use to train attendants. I have some detailed suggestions on both these areas that I make available to any interested volunteer, and I will be happy to share these with CGL too.

Share their learning curve experience with others who may want to support caregivers: With two years of trying to set up this social venture, CGL has experience that could be useful to others starting similar social ventures. CGL can share what worked and what did not when it tried to locate caregivers, connect with them and help them, and also as it tried to locate/ evaluate resources and services, etc.

Continue work on small, useful projects while also working to achieve its grander vision: Every contribution is a building block that makes a difference, whether it is gathering caregiver feedback, or testing various formats of support groups, or creating a resource directory, or just connecting caregivers who may have something to share with each other. I think CGL should continue to contribute in various ways, even if the projects seem small compared to its vision. A continual stream of results provides benefits that are of direct and immediate use.

To conclude, let me add a note on my interactions with CGL: Over these past two years or so, I have had multiple interactions with the CGL team. Currently, most interactions involve sharing ideas, perspectives, resources, and links. My focus is supporting dementia caregivers in India, and I remain available to CGL for sharing resources and material in this area, and also for related caregiver support. I also provide CGL information or leads in areas where I know they are interested. I assume our interactions will continue in this format. Getting clarity on CGL’s on-going projects will probably improve the mutual value from these interactions.

As CGL moves into year 3 and beyond, I wish the team the very best.

Swapna Kishore

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Click here to read our 2010 – 2012 Round-up – A note detailing key things we’ve been working at over two years.