1. Marshall, Katherine DNP, NP, PMHCNS-BC, CNE
  2. Hale, Deborah MSN, RN, ACNS-BC

Article Content

Caregivers are individuals who provide support and assistance to people who need care. The range of duties (or needs) a caregiver addresses for an individual can vary greatly and range from intimate personal care to tasks such as grocery shopping, bill paying, and taking the individual to doctor's appointments. Many caregivers are unpaid family members who care for parents or siblings. Sixty percent of caregivers also work outside of their caregiving responsibilities (Mayo Clinic, 2017). Often caregivers juggle raising young families and handling personal and work responsibilities in addition to the time that is spent caregiving. Of the 34 million caregivers who care for elderly family members, approximately 15% have the challenge of providing care long distance (American Geriatrics Society [AGS], 2016b). These caregivers have the additional expense of time away from work and family, and in many cases cost of travel, along with the demands of coordinating and communicating long distance with members of the care team.


Home healthcare clinicians have the unique opportunity to provide support and education to both unpaid family caregivers and paid caregivers during home visits. Often home healthcare patients live in their own homes or the home of a relative because of the care and supervision needed from the caregiver. This opportunity for maximum independence and aging in place is considered a quality of life issue for many patients.


Home healthcare clinicians can support the patient and caregiver by providing the caregiver with education on caregiving, and assist with identifying community resources for both caregiver support and patient needs. Clinicians who are astute at assessing the needs and limitations of a caregiver can offer both support and guidance for caregiver self-care and well-being and assist caregivers in their pursuit to optimize their caregiving skills. Clinicians can and should foster an environment where both the patient and caregiver feel and act as valuable members of the healthcare team.


Educating the caregiver on disease prognosis as well as anticipated progression often relieves the anxiety of not knowing or understanding what the future holds for the patient. The Aging in Health Foundation defines strategies for helping the caregiver provide the best care possible to their family member or patient. These strategies include efforts to build the patient's confidence, encouraging the patient to take small steps, and providing repeated encouragement. Caregivers should help patients remember their success and good days, and offer compassion and empathy by listening and being emotionally available and present during difficult times and treatments. Caregivers need to avoid useless gestures or offers, such as "let me know if you need anything" or "just call me if you need help" instead they should jump in and tackle the task at hand or provide a specific date/time they will be there to help. Caregivers can offer genuine words of encouragement and share experiences that will help the patient feel that they are not alone. Effective caregivers check in often with their family member or patient, and become familiar with the patient's illness and struggles. Finally, caregivers should know how to take care of themselves first, and by doing so they insure that they are available and ready to provide the best of care to their family member or patient (AGS, 2016c).


Home care clinicians must be able to recognize signs and symptoms of caregiver burnout, as it is such a stressful role. Signs of caregiver burnout include but are not limited to: chronic stress and worry, failure to meet one's personal and emotional needs, family conflict, increased incidence of illness, excessive use of drugs and/or alcohol, isolation or avoidance from friends, feeling irritable or blue, physical exhaustion, changes in sleep patterns, and depression. Caregiver burnout can ultimately lead to abuse or neglect of the patient and potentially result in placement of the patient in an alternative environment (such as a nursing home) (AGS, 2016a).


The Mayo Clinic (2017) recommends some strategies for coping with caregiver stress or burnout. One strategy is for caregivers to allow others to help so they can take a break. This may include accepting a home-cooked meal, help with shopping, or letting someone else spend a few hours with the patient. Small or brief breaks can give the caregiver an opportunity to recharge. Feelings of guilt over the inability to provide for every need is normal; caregivers should focus on what can be done and making the best decisions they can for the care of the patient. To persevere in their role, caregivers must establish realistic goals, and break chores into small manageable tasks. Caregivers should feel comfortable saying no to activities or requests that are too taxing or demanding for them at that point in time. Caregivers may wish to find community resources and support groups to learn about their loved one's disease and spend time with others in caregiving roles. It is important to keep and maintain close relationships with friends and family, as they can be a great source of support. Caregivers need to set personal goals for their health by establishing routines for physical activity, and regular screenings and immunizations with a physician (Mayo Clinic).


Home care clinicians can and should make sure that all caregivers have access to a wealth of community resources. Some widely available and well-known organizations that provide forums for support and education to caregivers are: AARP Caregiving Resource Center, Aging Life Care Association, Caregiver Action Network, Family Caregiver Alliance: National Center on Caregiving and the National Adult Day Services Association and the local Area on Aging. In addition to these national organizations, there are many local places of worship, senior centers, hospital-based education programs, and community centers that offer caregiver support as well as some disease-specific education. Home healthcare social workers are a valuable asset to all team members. Social workers can assist with securing financial resources that patients may not be aware of or have access to, such as information on low-cost local transportation and meal delivery (i.e., Meals on Wheels). Social workers have in-depth information on local resources such as: adult day care, community-based social activities in protected environments, and referrals to specialty providers. In addition, social workers will have numerous relationships and contacts with respite care, assisted living and skilled nursing facilities, and hospice as needed.


The current healthcare environment continues to move toward the delivery of care in the home and community, this movement has highlighted the importance of family and paid caregivers in the daily care of loved ones and patients. Home healthcare clinicians play an important role in coaching, educating, and supporting caregivers who provide the important first-line of care in the community.




American Geriatrics Society. (2016a, November).Caregiver health basic facts & information. In Retrieved from[Context Link]


American Geriatrics Society. (2016b, November). Tips the long-distance caregiver. In Retrieved from[Context Link]


American Geriatrics Society. (2016c, November). How to be the best caregiver you can be. In Retrieved from[Context Link]


Mayo Clinic. (2017). Stress management. In Healthy Lifestyle. Retrieved from[Context Link]