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Authors

  1. Bosler, Barbara JD, MHE, RHIA

Article Content

The Association of American Retired Persons (AARP) developed the CARE Act to support family caregivers when loved ones are in the hospital as well as when discharged home (2016). The acronym CARE stands for Caregiver Advise, Record and Enable, and features three elements:

 

1. Recording the name of the family caregiver in a patient's medical record when they are admitted into a hospital or rehabilitation facility;

 

2. Notifying the designated caregiver when the patient is to be discharged home or to another facility; and

 

3. Educating the designated caregiver on the medical tasks they will need to perform once the patient returns home. This includes administering medications and injections, intravenous medication therapy, performing wound care, and assisting patients in ambulating from one area to another within their home (Ryan, 2014).

 

 

AARP sponsored this Act to support family members as integral caregivers necessary for the patient to return home. The AARP Public Policy Institute and the United Hospital Fund conducted a population-based online survey of 1,677 family caregivers to determine what tasks they were actually performing. The survey confirmed the belief that family caregivers had transcended the usual tasks of the bathing and dressing of their loved ones to now performing what were once considered medical and nursing tasks. The survey validated that 46% of the family caregivers were managing multiple medications, preparing foods for special diets, providing wound care, managing incontinence, and helping with assistive devices and specialized medical equipment (Reinhard et al., 2012). More than one-half of the surveyed family caregivers also served as care coordinators, partly because they felt there was no other choice, or the actual patient's healthcare insurance did not cover professional help. Surprisingly, 69% of the patients in this survey reported that they received no home visits by actual healthcare professionals (Reinhard et al.). Family caregivers reported medication management and administration to be difficult because of the many prescription medications having to be managed each day and the time it took; there was also concern about making mistakes by giving the wrong prescription. Family caregivers who were performing wound care also reported being afraid of making a mistake. Interestingly, one third of these caregivers asked for more training.

 

Ten key recommendations came from this work:

 

1. review and revise the measurements used for activities of daily living;

 

2. develop new ways for healthcare professionals and family caregivers to interact with each other;

 

3. encourage healthcare organization support, leadership, and training to healthcare professionals in transitioning care to the home;

 

4. encourage professional organization leadership and training to improve communication and training by healthcare professionals to family caregivers;

 

5. evaluate existing curricula in medical, nursing, social work, and allied health programs to strengthen course offerings dealing with family caregiver roles and responsibilities;

 

6. evaluate the roles of accrediting and regulatory bodies to reinforce family caregiver support and training needs;

 

7. evaluate the roles of federal policymakers in developing new family caregiver models of care to include coordination and quality improvement;

 

8. identify funding and policy development opportunities by state policymakers;

 

9. encourage caregiver advocacy and support organizations to include family caregiver topics on their service and policy agendas; and

 

10. encourage academic and government researchers to conduct further studies to better understand all the medical and nursing tasks performed by family caregivers so that training and support needs may be continually updated (Reinhard et al., 2012).

 

 

AARP is now working to pass the CARE Act state by state. Oklahoma Governor Mary Fallin signed Senate Bill 1536 into law in 2014 to support its 872,000 family caregivers who thought it was important for hospital professionals to teach family caregivers how to perform medical and nursing tasks. The Hawaiian state legislature created a task force to evaluate the CARE Act and the best ways to implement it for its 247,000 family caregivers (Ryan, 2014). The Designated CareGiver Act will go into effect in Michigan on July 12, 2016 (State of Michigan, 2016). Similar to the CARE Act's three essential elements stated above, Michigan's Designated CareGiver Act will:

 

1. allow the patient to designate a lay caregiver;

 

2. require the hospital to notify the designated caregiver of a patient's discharge or transfer to another facility as soon as practicable; and

 

3. prepare this person for participating in after discharge care needs.

 

 

Michigan's Act further states that, the "hospital shall attempt to provide the designated caregiver the opportunity to ask questions and receive answers about the after-care assistance needs of the patient" (State of Michigan, 2016, p. 2). If it is determined that, "a live or recorded demonstration is necessary in order to appropriately prepare the designated caregiver for the patient's after-care needs, the hospital may provide a designated caregiver with a live or recorded demonstration of the aftercare described in the patient's discharge plan, and contact information for a hospital employee who can respond to questions about the discharge plan after the instruction is provided" (State of Michigan, p. 2). Once instructions are provided to the designated caregiver, they shall be documented in the patient's medical record.

 

Family caregivers residing in states where the CARE Act has still not passed may seek support from the AARP Family Caregiving home page at http://www.aarp.org/home-family/caregiving/. AARP offers articles, videos, support stories, phone numbers, and a state location tool so that family caregivers know they are not alone (AARP, 2016).

 

REFERENCES

 

AARP. (2016). Home and family: Caregiving. AARP. Retrieved from http://www.aarp.org/home-family/caregiving/[Context Link]

 

Reinhard S., Levine C., Samis S. (2012). Home alone: Family caregivers performing complex chronic care. AARP and United Hospital Fund. Retrieved from http://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/hom[Context Link]

 

Ryan E. (2014). The CARE act: Caring for family caregivers. AARP Home. Retrieved from http://blog.aarp.org/2014/03/10/the-care-act-caring-for-family-caregivers/[Context Link]

 

State of Michigan. (2016). Enrolled Senate Bill No. 352. Retrieved from http://www.inclusion.msu.edu/Outreach/State%20of%20Michigan%20SENATE%20BILL%20No[Context Link]