Sunday, September 13, 2015

Caregiving Study: Atlas of Caregiving

Richard, Robert and I recently participated in a study about our caregiving day.  If this sounds familiar it is because Richard and I did do something similar last year.  We kept a log of our daily caregiving tasks which was quite an eye opener.  I had no idea how many different caregiving tasks were a part of our day!  I wrote about keeping the log which you can read here.

Rajiv Mehta, Board member of Family Caregiver Alliance and Principal Investigator for Atlas of Caregiving, had worked with Denise Brown of to create the log and needed test subjects participants. Richard and I were eager to help.

A view of Robert from my camera
Fast-forward a year or so and Rajiv asked me and Richard to be a part of a similar study – except this time, we wear body cameras and monitoring devices that pretty much track everything (heart rate, body temperature, sweatiness (there’s some technical term for that but that is basically what it means) as well as movement.  We kept a scaled down version of our log which asks for the activity, time of day, length of activity and stress level of the activity.

We wore the monitoring equipment and cameras for 24 hours and then met with Rajiv and, Dawn, his partner for the study, to go over some of the results. 

Robert eats breakfast while I organize his meds
Robert even participated in the study which didn’t surprise me in the least.  When Robert lived independently he signed up for every study his doctor told him about and tried out new medications as well as medical devices being studied in order to help those with epilepsy.  Of course Robert wanted to participate in this study too!

The hardest part of the study was getting Taz to stop barking at Rajiv and Dawn when they visited the house.  The only other part of the study that gave me some concern were the body cameras.  I was afraid I would go to the bathroom with it on because they are so easy to forget about!  I never forgot to take the camera off when necessary and it took me about two minutes to not even care if I was even “camera ready” at all times.  (I think we could definitely have a caregiving reality show although Taz may not know what to do with all the strangers in the house all the time.)

Robert captures himself in the mirror while grooming
What surprised me about the study this time was the concept of time. Time is a subject that fascinates me because I am acutely aware of time due to Robert’s seizures.  Ten seconds may not seem like any time at all but when I am timing a seizure, it seems like an eternity.  Particularly when the usual seizure of 10 seconds turns into 20, then 30, then a minute and a half or more. 

Many caregiving tasks don’t take longer than five or ten minutes so it may not seem like much to a non-caregiver.  The killer is that these five or ten minute tasks are relentless! 

Two minutes to change the laundry and fold towels;
Five minutes to tidy up the house;
Ten minutes to get Robert up for the day and give him meds;
Five minutes to get Robert to the bathroom;
Ten minutes to get Robert into the tub;
Fifteen minutes to help Robert dress;
Thirty minutes to prepare medications for the week;
Five minutes to restock Robert’s supplies;

There are breaks between the tasks but there is always something to do!  And the interruptions – oh boy!  Caregivers know about interruptions. 

Robert's view of Richard waiting for him
We are still going through the pictures that were downloaded from the body cams which I think will be interesting since they will be from the other person’s perspective. I get to see what I look like to Robert, for instance.  I am very interested to know what he sees and suspect I will do a follow-up post about it.

Rajiv and Dawn were terrific to work with and we offered to participate in a follow-up study if they do one.  In the meantime, they are still looking for participants for this study and I highly encourage anyone in the Bay Area or Central California area to contact Rajiv about participating.

Rajiv explains a bit more about the study:

Share your experience of day-to-day caregiving to help Family Caregiver Alliance advocate for new technologies, improved services, and better policies to make caregiving easier and more effective. The goal of the Atlas of Caregiving project is to better understand the physical and emotional impact and time of providing care, in the hopes that we can use the data collected to impact change. We are seeking family caregivers, in the San Francisco Bay Area, who actively provide day-to-day care (chores, companionship, medical activities, etc.) to a family member or friend due to their illness or disability. Project participants are interviewed about their caregiving situation, and keep a log of their activities and wear a couple of small sensors for a day. Participants will be compensated $200. Get more details about participation here.

Robert sees Taz checking on him
I am happy to answer any questions about the study if you are on the fence about participating.  It really was painless and it was a nice surprise to get paid for it as well (we would have done this for free just because we hope the results will eventually help caregivers).  

Many thanks to Rajiv and Dawn for their work on this study, being so kind and respectful of our time and getting to know Robert a bit more.  And for putting up with our crazy and loud puppy! 

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