Thursday, April 25, 2013

You Are Not Alone

As a caregiver, do you ever sit and wonder if you are the only person going through a tough time learning to care for your loved one, trying to find the time to stay sane and manage your family who all may want to help, or maybe not to help too?

According to the AARP, there are an estimated 46MM+ primary caregivers and almost three times that in additional family members caring for elderly relatives today. Given that there are 314 million people living in the United States, this means that 41% of the population is helping care for someone.  But, with all of these numbers, why is it that people feel so alone?

From our experience, we have found that a lack of family togetherness and a lack of community are two of the reasons so many feel alone.  Email trails and forced phone calls often serve as the only methods of communication among family members.  One family recently shared their caregiving email trail with us.  It looked like a potential soap opera instead of a family caring for their father who is aging at home after suffering two strokes. 

One email chain looked a bit like, “who is paying for this” to “maybe Medicare pays” to “who is giving Dad his medicine on Tuesday afternoon” to “I think you are being mean because I live far away” to “did we forget to include anyone” to “I love you guys, but…”.

After chains of emails, it is hard to remember who is doing what, when and where.  It is almost impossible to communicate well and to ask for help in a way that is effective in getting that help.  This is especially complicated by the fact that most families do not live near each other any more so they depend on email and phone chains instead of in person updates and care.  The result is feeling alone, and as if you are the only person who really knows what is going on and often that you can’t get the help you need.

Over the course of developing Making Care Easier, we have found that sharing tasks and tracking who is doing what and having all of the information in one place makes a huge difference.  One of our users told us, “It is much easier for me to put up a request on MCE than it is for me to make phone calls and beg for help.  This way, I can ask, and I can hold others responsible for tasks - it is something I could never do over email chains or phone calls.” 

Using technology and tools is a great way to help save family relationships and to help introduce methods to the sometimes seemingly randomness that is often family caregiving.  Tools can track participation, make asking for help easier, and involve more family members and friends than usually possible via phone calls and email chains.  So, while many caregivers give up on involving others in care because the pain is much larger than the help, there are now solutions for not having to be alone and for not having to be the only one involved in caregiving for your loved one. 

Friday, April 12, 2013

How Technology is Transforming Caregiving

Caregiving Corner:

With more people living longer, effective caregiving requires new thinking about how we care for those we love.  Boston-based Making Care Easier (MCE) is dedicated to helping caregiving communities get the answers and solutions they need to ensure quality care for their parents, friends, and neighbors.

Here, writer Linnea Walsh speaks with Making Care Easier Founder and CEO Mary Jane Favazza and Founders Julie and Renee Fry to discuss challenges caregivers face, and benefits of MCE’s innovative solutions to better meet the needs of caregivers.

Q: What do caregivers face in being able to care for their parents and other loved ones?

JF:  More families are taking on greater caregiving responsibilities, and are often doing so, while spread out in multiple locations. The ever changing field of medicine is also enabling patients to live longer, while health care costs have been rising. Federal policy will at some point need to address entitlement reforms to ensure future solvency.

Q. Caregiving in and of itself creates challenges for family members.  Many people may not fully understand the high costs involved. Describe some.

MJF: Families in these caregiving situations spend surprisingly large amounts of money annually on caregiving, including both cash outlays and the economic impact on their lives of doing the caregiving work itself:
  • Working caregivers lose more than $659,000 over a lifetime from lost wages made up of ($567,000), retirement contributions ($67,000) and social security benefits ($25,000).  (MetLife, 2010)
  • Primary caregivers are spending over $8,800 per year on out-of-pocket expenses, excluding the cost of facility care (Genworth, 2010)
  • 63% Of primary caregivers reported lost income – an average of 23% of household income (Genworth, 2010)
  • 36% Of secondary caregivers contributed an average of $2,600 per person for out-of-pocket expenses (Genworth, 2010)
  • 1/3 of caregivers reported a direct negative consequence to their own careers as a result of caregiving responsibilities (Genworth, 2010)

Q.  How does Making Care Easier work to address the complex challenges of caregivers?

MJF and JF: Making Care Easier (MCE) our goal is to improve both the way families care for their loved ones and the family’s experience during that care through action and our “recipes” for care.  This is no small mission, but a critical one.  As founders, my counterpart Julie Fry and I come from the healthcare world.  I served in leading roles at Health Dialog and Julie was the former head of marketing for the National Association of Home Care and Hospice (NAHC).  Renee Fry comes from the world of government and politics and software start-ups. 

MCE offers family members and professional care providers a one-stop platform for families to coordinate care, find and buy products and services, share information and take action. 

Q:   Take us through a typical caregiving situation and how MCE helps caregivers cope.

JF:  When your mother is recovering from a serious stroke and/or your father’s dementia is worsening, MCE helps connect you to the resources you need.

RF: MCE saves time, provides actionable, condition-specific information and helps families share the burden of care. Our solutions help families coordinate care and find and purchase the right products and services for the right situation at the right time.  MCE's unique approach provides tools, including a soon to be launched mobile tool, that can be used by everyone on the patient’s care team, no matter how far away they are, to ensure active caregiving.

MJF: MCE is a game changer as MCE’s applications are married with MCE’s proprietary analytics that provide a tailored pathway for each caregiving situation resulting in regular use and a trusted relationship, both key drivers of meaningful usefulness for the user and monetization opportunities for MCE.

Q.  What are some of the ways caregiving has changed over the years?

JF: While technology is starting to address some of the needs of caregivers, no “recipe” for care exists.  If your father has a stroke, it is the first time for your family, but it is not the first time anyone has ever had a stroke.  Many stroke victims and their families have stories and experiences or “recipes” for care that can be shared.  The support that exists today is generally transactional in nature – geared to help families share information or find a nursing home, but this is designed and delivered episodically.   It lacks continuity of the relationship with the family and therefore misses critical information needed in evaluating the entire picture.  They seem to be available to answer any question someone might have without ever suggesting what the right question might be for the family’s specific situation.  While there is a lot of information out there and some tools to help people share information, there is a lack of support on how to take action toward the care and the process of that care.

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