Developing a “care map” (notes from caregiver conference session)

This post may be of interest to caregivers who might like to develop a “care map.”

Avenidas, the senior center in downtown Palo Alto, recently organized a caregiver conference.  One of the breakout session speakers was Rajiv Mehta, director of Atlas of Caregiving, on the topic of “Technology’s Impact on Caregiving.”  Though one objective of the session was to learn how technology help keep everyone in the care network in sync, that didn’t seem to be the actual content of the session.

The session focused on developing a care map, described as a “care ecosystem — who you care for, who else cares for them, and who cares for you.”  The process of drawing a care map is described in this 6-minute video:

Brain Support Network uber-volunteer Denise Dagan attended the breakout session and shared her notes, which include instructions for drawing a care map.  See below.



From Denise:

By the title of this information session you would think it was going to introduce attendees to various high-tech gadgets and apps that facilitate caregiving, but no.  The speaker, Rajiv Mehta, Director of Atlas of Caregiving, introduced us to a decidedly low-tech gadget made with a pencil and paper, the Care Map.

First, he asked us to think of caregiving like an iceberg.  There’s a few people you can see doing the daily caregiving, but there are many more people who play important roles whom you don’t see much of, but who are crucial to the well being of the person needing care.  At least, that is the way it should be, if you have all available resources in place.

Rajiv believes visualizing the demands on a primary caregiver using the Care Map is crucial because the burden of care will only increase as baby boomers age, and Medicare continues its mandate to reduce spending waste.  Even when caregivers do have help, logistics can be challenging.  A Care Map can help plan logistics, too.

A brief survey of attendees show most people communicate and coordinate with friends and family using 3-ring binders, phone, email, texting and WhatsApp, facebook, Skype, FaceTime, and Google Hangouts, CaringBridge and Lotsa Helping Hands community care calendar websites.  Even with all these tools, resources can be underutilized or missed, altogether.

The idea of the Care Map is to get an overview of everyone involved in an individual’s caregiving community, offering a 30,000-foot-view.  By looking at the big picture, one can see:

– Who is indispensable?  What would happen if they suddenly became ill or injured?

– Are those involved aware of one another’s involvement?  Might things run more smoothly if they were organized? The household wouldn’t have too many casseroles, and someone would be fetching the dry cleaning, perhaps.

– Can responsibilities be divided according to expertise and distance from the person needing care.  Does a family member live across the country, and specialize in taxes, for instance.

– What is each person’s impact? Some people who believe they are helpful, are actually stressful to the primary caregiver and/or the person needing care.  Can that be remedied?

A Care Map can also change perspective because of what you don’t see:

– Have you forgotten to include anyone important to the person needing care?

– Are you taking anyone for granted, making them feel overburdened?

– Are there family members or friends who could be involved, but may not know help is needed.

– Are there professional services that could be helpful?  A geriatric care manager, grocery delivery, etc..

– What changes have occurred since last time a care map was drawn?  They should be updated periodically to illuminate resources that have ben dropped, but should be restarted, for example.

Drawing a care map is useful to the people immediately involved in a caregiving situation, but it can also be a powerful method of communicating the whole situation to professionals in identifying resources that are being underutilized.  Share it with your physician or nurse practitioner, a geriatric care manager, or social worker to make sure you have all the support in place that you, and the person you’re caring for, need.

Rajiv showed a sample care map.  Draw your own Care Map.  Simple instructions are below:

1. Draw a symbol for the person needing care and everyone living in the household with him or her (including pets).

Place a circle (or, better yet, a house) around them, and label everyone inside.

2. Do the same for the primary caregiver(s), if they live separately (as in the sample diagram).  If they live with the person needing care, leave enough space between everybody for labels and arrows.

3. Add thick arrows between the primary caregiver(s) and the person needing care.  Note, arrows point in the direction of care and some people care equally for each other, as in the sample diagram.  Thick arrows indicate involvement in another’s care more than once, daily.

4. Begin adding other people involved in the life of the person needing care.  Be sure to include day programs, doctors, support groups, religious organizations, and in-home health aids, along with friends, and family.  Remember to leave space for labels, arrows and anyone you forget in the first draft.

Note: Locate people on the paper according to driving distances; nearby being 20 minutes away with the next, middle distance, being 2 hours travel time, and far away being more than 2 hours.  Add circles to indicate those distance guides, when you have everyone listed.

5. Add thin arrows for those involved daily with the person needing care, dashed arrows for those involved weekly, and dotted arrows for those involved occasionally.  Be sure to include any thick arrows for primary caregivers in other households, so you don’t overburden them with help requests for your person needing care.

6. If you find someone with a dotted arrow, or no arrow, consider their skills and availability, then present them with a specific help request.  Starting with small favor or errand is more likely to garner their continuing assistance.

7. Use your Care Map to make sure all your caree’s needs are met by coordinating skills and availability among their friends, family, spiritual and medical community, as well as commercial services.  Share your Care Map with  people who may be able to spot gaps between needs and resources.

Here is a link to a 6-minute demonstration video:

Good luck!

– Denise