The Ninth Caregiver Right:

I have the right to expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers. 

Americans are living longer lives than ever before, but we are not necessarily leading healthier lives.  Older Americans with multiple health problems are suffering needlessly, as are their family caregivers, because our health care system does not effectively coordinate their care.
 

·         One in 5 older adults has complex chronic health conditions that will require ongoing medical intervention; 90% have at least one chronic health condition, while 77% have multiple conditions.

·         Older adults with multiple chronic health conditions average 37 physician visits with 14 different doctors a year.  These same adults may receive as many as 50 separate prescriptions a year. 

·         Older adults with multiple chronic health conditions often face duplicative tests, procedures, and costly medications.  The more numerous the treatments, the greater the  potential for errors.

·         The family caregiver not only copes with the physical and emotional needs of their loved one, but also pays a hefty financial burden for these treatments: depleting savings and retirement funds; borrowing money; needing gifts of money from family members and friends; or seeking government aid to cover expenses.  Others cut back household expenses or their own health care needs.  Out-of-pocket expenses for the caregiver average approximately $6,000 a year. 

Because so little of this healthcare is formally coordinated, the already overwhelmed caregiver often tries to organize, coordinate, and record all the treatments, paperwork, and bills associated with care. Without sharp improvements to healthcare coordination and resources, patients and caregivers can expect to shoulder more costs, more complexity, more needless bureaucracy, and increased risks of errors. 
 

One way to mitigate some of these challenges is to ensure robust communications between all members of the healthcare team.  Physicians involved in the care of the individual patient must coordinate with each other to decrease risks of misdiagnosis and to avoid duplication of services.  When more than one physician is prescribing medication, it is imperative that only one pharmacy system be used to safeguard the individual from potential medication errors and dangerous interactions that could result in serious consequences.  Electronic medical records will ease some of these problems, but will never totally replace the need for physicians to communicate with each other.   

Families should not have to fend for themselves in finding support services for their loved one or themselves.  We need to come together as a caregiving community to share knowledge and information.  There are many support groups in place for caregivers, but it is often too difficult to leave the home to attend the meetings. The internet is considered an in-home support for a growing number of caregivers. Each of us needs to share information – including our personal lessons learned. 

As America ages, Baby Boomers – long known for their activism -- are expected to play a very important role in health care reform.  Their sheer numbers will almost double the population of seniors in the next two decades in America.  They will be more technologically savvy then earlier generations, and more demanding.  They are not expected to sit quietly and allow their healthcare needs to be overlooked.

Yet we cannot afford to wait for a rising generation of seniors.  We need to be activists for better care today.  We need to learn about our health care issues, needs, medications, and choices.  Despite the ongoing national debate, we can expect that our system of healthcare will change – and we have both the opportunity and imperative of shaping that change.  We need to learn all that we can; we need to make our informed voices heard.

The Campaign for Better Care, www.CampaignforBetterCare.org focuses on making healthcare  comprehensive, coordinated and family-centered.  The goal is to bring the voice of the consumer into the current debates over healthcare reform.  Please take time to get involved and share what you learn.   Change is also occurring right now in individual states.  To learn what changes are taking place in your state, check out www.communitycatalyst.org.

In the end, the Caregiver’s Bill of Rights is only as effective as those of us who seek to uphold it.  Let us begin now.