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Managing Caregiver Stress

Patient Advocates

A Resource for Managing Caregiver Stress


The content in this blog post was published in the "Parkinson's Perspective" Wisconsin Chapter Newsletter of the America Parkinson Disease Association.
Parkinsons Perspective Article by Debby Deutsch

Behind Most Patients is a Family

When it comes to support and assistance for the Parkinson’s community, most effort is property focused on the needs of the person living with the disease. But behind many patients, there is a family caregiver providing support to the patient on a continual basis. Often, the family caregiver is a spouse or an adult child of the patient, who may have other family obligations and career to manage, in addition to seeing to the evolving needs of the patient.

Dealing with Complex Medical Issues

Besides basic support for the patient, the increasing complexity of our healthcare system has generated an expanding list of challenges. These include a myriad of treatment options, some of which may, or may not, be covered through patient insurance benefits. Even when covered, studies show more than 50 percent of all medical bills contain errors, typically due to improper coding. This has led to a greater challenge in dealing with coverage. Most of us, as healthcare consumers, are feeling the pinch of increase premiums and decreased benefit coverage. These complicated issues are oftentimes left to the family caregiver to resolve

Time Management is Paramount

Time Management for Caregivers
Consequently, time management for the family caregiver becomes paramount. It is extremely difficult to juggle the many priorities of patient needs, family and career. Particularly when simultaneous time conflicts occur…do I take mom to her doctor appointment or watch my daughters’ volleyball game? Priority conflicts can cause extreme angst and stress, sometimes creating health issues for the caregiver. The question quickly becomes, how do I adequately support the patient, meet my own needs and responsibilities, and maintain my own sanity, simultaneously? Fortunately, help is available through the emerging discipline of patient advocacy. Patient advocacy is a general term for an individual or organization working on behalf of the patient and his/her family through diagnosis and treatment options, navigation care systems and insurance, and more.

Center for Patient Partnership

The Center for Patient Partnership (CPP) at the University of Wisconsin – Madison has been training post-graduate patient advocates for several years. It is one of only a couple programs throughout the nation to do so. The CPP offers a free helpline, manned by the program’s students, to provide guidance on how to resolve issues. Some advocates go on to work for healthcare providers and healthcare insurers, but they are bound to the systems which employ them, which may not provide the necessary support for the patient and caregiver.

Patient Advocates Vital to Caregivers

In an attempt to meet these unique needs, there is an emerging service, private patient advocacy, that is becoming available nationwide. Private patient advocates are focused on the needs of the patient and caregiver, providing assistance to the caregiver in resolving priority issues with which the caregiver is struggling. Services may include accompanying the patient on doctor visits, investigating billing errors, and resolution of billing issues with healthcare insurers and providers. This assistance, which is available through private patient advocates firms or some community support systems, focuses on the unique needs of the patient and results in significant reduction of the stress levels of the caregiver. Some patient advocacy firms may also provide care coordination and provide recommendations on employment and ADA issues. Most will be able to connect you with additional resources in your community.

To ensure consistency of service, patient advocates are encouraged to become accredited and board certified by the Patient Advocate Certification Board. Several organizations are dedicated to providing vetted access to patient advocates throughout the nation, such as Advoconnnection.

Bottom line? 

There is a tremendous problem with stress of the family caregiver. 

The good news…help is available.

What is a Patient Advocate?

A patient advocate is an independent professional engaged and paid for by a client to help achieve a particular health outcome for a patient.

What is a Patient Advocate
COORDINATE: Care coordination between you and your medical team
MONITOR: Insurance and billing issues
IDENTIFY: Identifying complimentary healthcare and community support
RESEARCH: Obtaining second opinions, research regarding diagnosis and/or clinical trials
SUPPORT: Advanced Care Directives facilitation support and Healthcare Power of Attorney
ASSIST: Assistance during times of healthcare transition: clarifying options and identifying resources that best fit your needs right now
By Debby Deutsch, BPCA 
Patient Care Partners
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