2 posts tagged “CareTeam”

Honoring Family Caregivers Everywhere

Posted November 26th, 2012 by

Is there a caregiver in your family?  For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?

November Is National Family Caregivers Month

November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis.  Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week.  Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.

Yet what many people may not think about is the economic and health impact on the family caregiver.  Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers.  In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves.  Read other eye-opening caregiver statistics here.

PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members.  That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend.  Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles.  That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.

ALS patient Persevering’s CareTeam members (his wife and his sister, respectively) are displayed in the “About Me” section of his profile.

Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers.  Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.


Giving Caregivers the Recognition They Deserve

Posted November 16th, 2011 by

“The true strength of the American family finds its roots in an unwavering commitment to care for one another.”

– President Barack Obama

November is National Family Caregivers Month, “a time to thank, support, educate and empower family caregivers.”  There are more than 65 million family caregivers in the US who day in and day out fulfill a vital role on the care team for a family member.  They also tend to be the most knowledgeable person when it comes to daily treatment, diet and exercise regimens for the person they love.

November Is National Family Caregivers Month

The theme for National Family Caregivers Month 2011, sponsored by the National Family Caregivers Association (NFCA), is “Identifying Family Caregivers.”  The goal is to encourage both caregivers and medical providers to ask for a designated space on every medical intake form for a caregiver name.  Otherwise, the NFCA argues, caregivers are “invisible in American healthcare.”

In contrast, caregivers play an important and prominent role in PatientsLikeMe’s “CareTeam” concept, which was developed to include everyone who is actively involved in the care of our patient members.  That could be a spouse, partner, parent, child, doctor, home health worker, relative or friend.  Patients can invite anyone on their real-life CareTeam to join PatientsLikeMe and be linked directly to their profile.

Currently, there are more than 7,000 caregivers using PatientsLikeMe.  (Browse their profiles.)  Here is a sampling of their stories and situations:

  • “I am a mother who would like to know more about bipolar disorder and know how I can help my daughter, and let her know I care.”
  • “I am a caregiver for my wife, who has generalized epilepsy. I have allocated a big part of my life to help my wife become more stable.”
  • “In 2005 my husband was diagnosed with young onset Parkinson’s disease and through my desire to be the best caregiver possible I forgot about me.”
  • “My husband was diagnosed with ALS at age 47 in June 2007 on our 25th anniversary.  It’s hard to see not only his body deteriorate but his spirit too.”
  • “For decades, I have been caring for members of my family and community regarding mental illnesses and life challenges, mostly my beloved auntie.”
  • “On July 6, 2008, my partner got results saying he was HIV positive. It was a hard night for us, we cried and talked and cried some more.”
  • “I am 30 years old. I am one of the caretakers for my father who was diagnosed with ALS when I was 8 years old.   I try to be there for him as much as he needs.”

Are you a caregiver?  We encourage both you and the patient in your life to join PatientsLikeMe to share your experiences, find support and learn from other patients and caregivers.