1. Section Editor(s): Newland, Jamesetta A. PhD, FNP-BC, FAANP, DPNAP

Article Content

In my February 2016 editorial, I wrote about my mother and Alzheimer's disease. Although she maintains mobility with an assistive device and is still able to use the bathroom independently, someone else has to direct or deliver every other aspect of her life due to her cognitive decline. Family caregivers provide the bulk of long-term services and support to patients in their homes-especially older adults-yet they usually remain invisible, and their voices are never heard.

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Caregiver expectations

In 2012, the AARP and the United Hospital Fund, with funding from the John A. Hartford Foundation, published the results of a survey of 1,677 caregivers "who provided unpaid care to a relative or friend age 18 or older in the preceding 12 months."1 The purpose of the study was to better understand what family caregivers are expected to do and how healthcare professionals can better support them.


The executive summary made 10 major recommendations. As the needs of patients in the community have expanded beyond assistance for routine daily activities such as bathing, dressing, and eating, family caregivers must now perform medical/nursing tasks that were once reserved for highly skilled professionals in hospitals or special facilities.


Assessing the results

The results revealed gaps, as 46% of respondents reported performing medical/nursing tasks for care recipients with multiple chronic physical and cognitive conditions, including wound care, special diets, using monitors, or operating medical equipment; many (78%) managed multiple medications. Of the 35% of family caregivers who responded that wound care was challenging, 66% said fear of making a mistake was the most common reason. In addition, over 53% of family caregivers acted as care coordinators.


Providing care affected the quality of life (QOL) of family caregivers, with more than half reporting feeling down, depressed, or hopeless in the last 2 weeks; more than a third reported fair or poor health themselves. Many caregivers felt that they were preventing long-term care facility placement of the recipient by providing these services, which had a positive effect on overall QOL for both caregivers and recipients. One startling result was that 69% reported few home visits from healthcare providers (HCPs), and the most likely visitor was a nurse. Recommendations directly relevant to HCPs called for personal responsibility in ensuring that patients and families understand how to perform the tasks expected of them in the home; support from healthcare organizations to HCPs by providing resources, leadership, and payment policies; improved communication and training for family caregivers; and changes in HCP curricula and continuing education to emphasize the importance of training family caregivers.


Several recommendations were directed toward policy at all levels. Progress on these recommendations is possible via increasing awareness of the tasks and stresses placed on family caregivers; working together to provide the resources needed for HCPs to prepare family caregivers; and supoorting family caregivers so they can confidently and effectively provide care.


Providing a helping hand

As NPs, we regularly encounter family caregivers who are on the verge of giving up. The AARP created the collaborative Home Alone Alliance, which "focuses on moving policy into practice by identifying innovative practices and creating instructional resources for family caregivers and the professionals who support them."2 Several nursing organizations play an active part in this collaborative and have developed useful resources. The theme for National Family Caregivers Month November 2017 is Caregiving Around the Clock. Caregiving can be a 24/7 responsibility, and it is imperative to use the available resources to help family caregivers continue to provide care.


Jamesetta A. Newland, PhD, FNP-BC, FAANP, DPNAP

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1. Reinhard SC, Levine C, Samis S. Home Alone: Family Caregivers Providing Complex Chronic Care. Washington, DC: AARP Public Policy Institute; 2012. [Context Link]


2. Home Alone Alliance. 2015. [Context Link]