Awareness and Advocacy

I'm going to use this new blog of mine today to reach out for some help with my upcoming capstone project for my masters degree.  I am developing a presentation focused on awareness and advocacy for caregivers of those with Parkinson's disease.

As a caregiver myself, one of the things I have found to be true is how isolating caregiving can be.  Even though there are approximately 7-10 million people afflicted with Parkinson's disease worldwide and most of them have some sort of informal caregiving, the task of caregiving still tends to leave one alone in their own exhausting world.

And although there are caregivers to people with all different needs who also experience this isolation, my capstone project focuses specifically on Parkinson's caregivers as I've only got four months to complete this project and it needs to be pretty specific (and of course, this particular caregiving is near and dear to my heart).  

Within this project is the desire to find better ways for coordination of care between medical specialties and caregivers.  In order to work towards this goal, I need to hear from caregivers to find out what would make their lives easier through this process.  There is currently scary research showing that over forty percent of those caring for someone with Parkinson's have reported that their physical health had declined while nearly half have reported increased depression symptoms and two-thirds reported significant impacts on the relationships in their lives.  Yet, very little research has been done on the treatment of caregiver-burden.  

Statistically, women perform somewhere between 59% and 75% of the caregiving duties with an average age of 46 years old.  This means that many of these women are still raising children and quite possibly trying to hold down jobs (like myself).  A national study showed that 33% of women caregivers reduced their work hours while 29% passed up job promotions or new assignments and one fifth of female caregivers switched to part-time work while 16% quit their jobs entirely.

In a 2012 report, Deborah F. Boland and Mark Stacy presented the recommendation that "All clinicians regardless of specialty should have some familiarity with motor and non-motor symptoms related to Parkinson's disease".  They go on to state that the estimation of direct and indirect costs associated with Parkinson's disease will reach 23 billion annually in the United States.  Those with Parkinson's disease have a higher comorbidity occurrence than those without Parkinson's disease.  Yet, coordination of care still has a long way to go and this issue has great impact on caregivers.

The above research is just the tip of the iceberg and it is why I am reaching out to caregivers in order to put together my own advocacy and awareness program that I can present both in person and through the web to impact as many people as possible.  I have received positive feedback from the national Parkinson's organizations to whom I have reached out for support.  Now I just need the people on the front lines.  I need the caregivers.  

I am asking for caregivers to e-mail me at kh899@nova.edu if they are interested in taking part in a survey (to be finalized sometime in September).  It will be a survey that can be e-mailed so I am hoping to reach caregivers from around the world with all different backgrounds.  I need the voices of those living in this world of Parkinson's caregiving.  I need to hear about the challenges as well as the rewards.  I need to know what caregivers need in order to best assist those for whom they are caring.  And I need to know what they need to best care for themselves.  

So, I would appreciate everyone who sees this blog post sharing it via e-mail or social media so I can reach out to as many people as possible.  You may not even know who is caring for someone with Parkinson's in your circle of friends simply because this world is so isolating, so please share this and ask your friends to do the same.  This is one Parkinson's caregiver reaching out to others in solidarity in order to create change.  I sincerely appreciate your help with my journey.