1. Marrelli, Tina MA, MSN, RN, FAAN


As a home care and hospice consultant, I have written a newspaper column about caregiving in Sarasota County, Florida, a county with a median population age of 55 years (, n.d.) for many years. The following story is one of many I hear about every year. Sarah, an 86-year-old woman, has moved in with her adult daughter and son-in-law. My involvement began with a phone call from this very distraught couple who were trying to do the right thing and bring a family member into their home when it became obvious she was no longer safe on her own. This move did not occur with much forethought or planning; however, it soon became clear that Sarah was very demanding and difficult, and would not follow the doctor's recommendations nor theirs. The son and daughter-in-law work full time and have two children, ages 14 and 18, living at home. They related that, although Sarah had always been "prickly," her negative behaviors seemed magnified when she moved into their home. The last straw was when Sarah fired the aide they had hired to assist with her personal care. They knew they needed to regroup and develop a long-term plan that would be best for Sarah and her care needs.


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Caregivers can be the best source of history, knowledge, likes, and dislikes of their loved one. In addition, as with this couple, they may live in the same home and accompany them across the care continuum in all settings for care. They are an untapped, unacknowledged (and sometimes unappreciated) source of knowledge and expertise-the go-to person when planning care for an older adult who has lost the ability to be independent.

Figure. No caption a... - Click to enlarge in new windowFigure. No caption available.

The Congressional Budget Office predicts that one fifth of the U.S. population will be aged 65 years or older by 2050. That is 12% more than in 2000. The greatest growth will be in individuals aged 85 years or older who will make up 4% of the population by 2050. That growth in the older adult population will bring a corresponding surge in the number of older adults with functional and cognitive limitations (Congressional Budget Office, 2013). What this all means practically speaking is-there are three kinds of caregivers: 1) those who have been caregivers in the past, 2) those who are caregiving now, and 3) those who will be caregivers and caregiving in the future. This has implications for all of us.


Who Exactly is a Caregiver? A Review of the Numbers and Facts

The Bureau of Labor Statistics (2015) reports 57% of the 40.4 million caregivers are women and defines eldercare caregivers as anyone age 15 and older who has provided unpaid care to any adult age 65 and older in the last 3 to 4 months because of an aging-related condition. The U.S. Department of Health & Human Services (2016) estimates one in five people (or 66 million Americans) are caregivers of friends or family members who are aging, ill, or disabled. Translated into the cost of hiring a home healthcare aide, the care provided by these informal caregivers was valued at $234 billion in 2011 (Congressional Budget Office, 2013). This number does not include lost wages that may be incurred by the caregivers. Figure 1 estimates the proportion of care provided by informal caregivers to be 55% of the total economic cost of $234 billion. The costs for caregiving of older adults will continue to rise. Starting on January 11, 2011, and continuing through 2030, 10,000 Americans turn 65 every day (Pew Research Center, 2010). Other factors contributing to these costs are medical errors and overtreatment and unnecessary care. According to a study by the Centers for Disease Control & Prevention (CDC), common medical errors contribute more than $4.5 billion in additional health spending a year (Centers for Medicare and Medicaid Services [CMS], 2008). Other drivers include the costs of rehospitalizations within 30 days of hospital discharge and structural processes in healthcare policy that pay for inefficient, duplicative, or unnecessary care.

Figure 1 - Click to enlarge in new windowFigure 1. Estimated economic value of formal and informal long-term services and supports for elderly people in the United States, 2011.

Aligned With the CMS Quality Strategy and AHRQ's Priority Area

The Agency for Health Care Research and Quality's (AHRQ) Health Care Innovations Exchange has prioritized patient- and family-centered care in hospitals. The AHRQ website states: care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. It redefines the relationships in health care by placing an emphasis on collaborating with people of all ages, at all levels of care, and in all health care settings. This collaboration assures that health care is responsive to an individual's priorities, preferences, and values. In patient- and family-centered care, patients and families define their "family" and determine how they will participate in care and decision-making (AHRQ, 2016).


This may sound like common sense to those of us in home care and hospice, but may not be the norm in other settings. In addition, the role of the caregiver in safety and quality initiatives was recently given emphasis and more value when CMS published its "Overview of the CMS Quality Strategy" in 2016. Simply put, the Quality Strategy identified six priorities. They are:


"Goal 1: Make care safer by reducing harm caused in the delivery of care.


Goal 2: Strengthen person and family engagement as partners in their care.


Goal 3: Promote effective communication and coordination of care.


Goal 4: Promote effective prevention and treatment of chronic disease.


Goal 5: Work with communities to promote best practices of healthy living.


Goal 6: Make care affordable."


(CMS, 2016a)


The second strategy listed above, "Strengthen person and family engagement as partners in their care," has direct implications for home care, and the CMS lists specific objectives for that goal: 1) "ensure all care delivery incorporates person and caregiver preferences," 2) "improve experience of care for persons and families," and 3) "promote person self-management" (CMS, 2016a).


There are four goals that support this second listed strategy specifically and they are:


Goal 1: actively encourage person and family engagement along the continuum of care . . .


Goal 2: promote tools and strategies that reflect person and/or family values and preferences and enable them to actively engage in directing and self-managing their care,


Goal 3: create an environment where persons and families work in partnership with . . . health care providers to develop goals informed by sound evidence . . . and


Goal 4: improve experience of care for persons, caregivers and families . . . (CMS, 2016b).


Home care clinicians and leaders can directly impact a number of these priorities. My sidebar story about my father-in-law, Otto, in Box 1, illustrates how family caregivers can positively impact safety and quality. Goal 1 was achieved by stopping the medication after one dose when it was identified that this increased Otto's fall risk (given his history and the knowledge that the greatest predictor for another fall is a history of falling). With regard to goal 2, care was positively impacted by the organization/hospital's embracing of us as family caregivers and very active participants of the care team with input into care and care planning. In terms of goal 3, care was positively impacted by effectively communicating and coordinating with the healthcare team members as advocates for the best care as the family caregivers who know Otto: how he acts when he is feeling his best, his norms, his wishes, his baseline health and behavior data, and more.

Box 1 - Click to enlarge in new windowBox 1. Sidebar Story

These government initiatives clearly value and will help to support caregivers and caregiving. It is the caregiver who knows the patient best, and caregivers must be better educated, when necessary, and empowered to be the best personalized case managers they can be. Each of the above listed CMS goals has clear objectives. For an example, "Goal 1: Make care safer by reducing harm caused in the delivery of care" has one strategic result listed: "Health care-related harms are reduced" (CMS, 2016a). The three objectives supporting that first goal are: 1) "improve support for a culture of safety," 2) "reduce inappropriate and unnecessary care," and 3) "prevent or minimize harm in all settings" (CMS, 2016a). Those words "in all settings" assure the inclusion of home, which more often will be the setting for healthcare. This alignment with the CMS quality strategies also helps home care managers and clinicians better align with other provider types and with the 2017 home care Conditions of Participation with the emphasis on safety, quality, and person-centered care.


Efforts Toward a Common Language in Healthcare

Historically, patients and family caregivers were often educated with terminology that did not use proper medical words. For example, a patient might have been told he had a "heart rhythm" problem, whereas now we are encouraged to provide patients and caregivers with accurate terms that healthcare professionals use. In this example, the patient would be told he has "atrial fibrillation" and the implications of atrial fibrillation related to safety, care, and management that he needs to be aware of, rather than just being told he has a heart problem. Knowledge is the basis for effective advocacy. Advocacy with knowledge is emerging as a key driver for success as a caregiver.


The way for caregivers to be/become better and more effective advocates is through knowledge. We are starting to see the role of caregivers and the importance of caregiving being recognized and formalized. There are centers of excellence emerging as well as tools and products to help support caregivers. Some proactive and forward-thinking organizations employ "caregiving coordinators" and other roles/titles that value the work and contributions of caregivers. One recent meta-analysis, authored by Rodakowski et al. (2017), noted that "discharge planning interventions with caregiver integration were associated with a 25% fewer readmissions at 90 days." Recent efforts by state governments and the proliferation of the Caregiver Advise, Record, Enable (CARE) Act are a result of grassroots efforts to embed caregivers and caregiving knowledge into the care process wherever in the healthcare continuum the patient and caregiver traverse. The CARE Act has been passed or introduced to the legislature in over 30 states; see Box 2 for a full listing (AARP, 2016).

Box 2 - Click to enlarge in new windowBox 2. States With the CARE Act Enacted or in the Process of Being Signed Into Law

The Web: The Good, the Bad, and the Ugly (or a Great Resource?)

No discussion of self-education in today's world is complete without mentioning the Internet and the World Wide Web as sources of information-whether good or bad. There is no doubt that, although the web offers a lot of information, there is a great deal of variance. There is much information on the web and not all is accurate or evidence-based. When using the web, consider how the information provided is vetted. Is the website sponsored by a legitimate organization such as the American Diabetes Association? Even savvy web users, when searching for healthcare-related information can find themselves "down a rabbit hole" of products and supplies advertisements. It is for this reason that many physicians and other care providers caution patients not to go on the web to "research" their healthcare problem or disease and/or treatment.


Next, consider that most patients do not have just one chronic condition, so they must go to all the sites that have information about their health problems. They may have hypertension, a lower leg vascular wound, a history of a heart disease, and more. This patient needs clear information about wound care, infection control, dietary guidelines and food choices for cardiac concerns, and more. Next, think about how the organization supports caregiving and caregivers. Is there a standardized curriculum? Are support groups offered? See Box 3 for resources for caregivers.

Box 3 - Click to enlarge in new windowBox 3. Resources for Caregivers

It Is the "Right Thing to Do"

There is much in the literature about caregiver stress. Some patient problems or diagnoses can create more stress on caregivers than others. This might include Alzheimer disease and care toward end of life (e.g., cancer care). Depression and depressive symptoms are another problem that can add additional burden to caregivers. Mitchell and Possel (2017) found, in a cross-sectional pilot study of 49 caregivers providing care for someone with cancer, a number of links between burden and depressive symptoms. They explored the topic of repetitive negative thinking and used a questionnaire the caregivers completed. They noted that impact on schedule and finances were most often linked to repetitive negative thinking, and repetitive negative thinking was positively related to depressive symptoms. The authors suggest that detecting repetitive negative thinking and intervening early may prevent onset of depression. They go on to state: "The interactions between clinicians and caregivers may be particularly important for connecting caregivers with support mechanisms (e.g., support groups, online resources, educational materials) as well as behavioral health professionals . . . when appropriate" (Mitchell & Possel).


Jones and Pastor (2017) noted that in patients with complicated diseases such as Alzheimer disease, caregivers may not know what the appropriate steps are, particularly with regard to locating resources and assistance. Home care and hospice clinicians may be in the best position to positively impact caregiving and support caregivers. The following are some ideas or questions to ask to help improve support and care for the caregiver:


* On the plan of care, does it clearly state who the primary caregiver is? Are they a part of the plan? Are they "checking in" on the patient on a regular basis to see how they are doing?


* How is the caregiver's health? What would the plan be if they were no longer able to provide care?


* What are most important aspects (think quality and safety) they must learn and understand (effective teach-back) between visits and/or shifts?


* Do they know who to call for any questions, including during after-hours?


* Do we know and ask if they have what they need for care from a psychosocial and socioeconomic perspective (e.g., that they have food for the preparation of meals for their loved one with diabetes, all of their medications and prescriptions filled, heat and/or air conditioning in the house, etc.)?


* Is social work consulted in a timely manner when there are identified impediments to the plan of care being implemented?


* Does the patient and/or caregiver need counseling?


* Is there a mechanism for respite or a break for the primary caregiver?


* Is the primarily caregiver able to get to the doctor or otherwise provide for her own self-care and health management as needed?



The burdens of caregiving have been known and recognized by home care and hospice clinicians as we often see the stress and distress when caregivers are providing care, and when we as clinicians sometimes serve as an outlet for venting from the caregiver. Much research and practical application must be made to determine what the best caregiving support, tools, and other resources will be and become.


Think "might for right"-who better to protect and support their loved one than caregivers? Who better than the person who loved them and otherwise cared for them when they needed care? This might be a partner, a lover, a long-term friend, or adult child. Whoever the caregiver is, it is time to embrace the person and the role. At this time, they are an unseen and underserved population. This is a unique commitment and special relationship that must be valued. The fact the government in the form of CMS and AHRQ understand this is heartening. It is also fundamental and common sense-two words we often do not hear used in the healthcare space.



There are several important factors that are converging to make healthcare more accessible and better (safer and truly patient-centered). This article seeks to explain some of these converging drivers to change and improve healthcare from an advocacy and self-care perspective. Home care and hospice clinicians caring for people at home, and others providing different models of care to people at home will all witness this change from "provider-concentric care" to truly operationalizing person- and family-centered care. Those of us practicing, managing, and otherwise leading with the knowledge of "how this looks" in daily operations when caring for people and their caregivers in their homes have important roles in articulating and advocating for this change in mindset, practice, and policy.




AARP. (2016). The Caregiver Advise, Record, Enable (CARE) Act. Retrieved from[Context Link]


Agency for Health Care Research and Quality. (2016). Advancing the practice of patient- and family-centered care in hospitals: An Innovations Exchange Learning Community. Retrieved from[Context Link]


Bureau of Labor Statistics. (2015). Unpaid eldercare in the United States-2013-14 summary. Retrieved from[Context Link]


Centers for Medicare & Medicaid Services. (2008). SMDL #08-004. Retrieved from[Context Link]


Centers for Medicare & Medicaid Services. (2016a). CMS Quality Strategy 2016. Retrieved from[Context Link]


Centers for Medicare & Medicaid Services. (2016b). Person and family engagement strategy. Retrieved from[Context Link] (n.d.). Sarasota County, Florida (FL). Retrieved from


Congressional Budget Office. (2013). Rising demand for long-term services and supports for elderly people. Retrieved from[Context Link]


Jones A. L., Pastor D. K. (2017). Complicated dementia: Teaching caregivers to recognize signs and take the next steps. Home Healthcare Now, 35(3), 142-149. [Context Link]


Mitchell A., Possel P. (2017). Repetitive negative thinking: The link between caregiver burden and depressive symptoms. Oncology Clinicians Forum, 44(2), 210-216. [Context Link]


Pew Research Center. (2010). Baby boomers retire. Retrieved from[Context Link]


Rodakowski J., Rocco P. B., Ortiz M., Folb B., Schulz R., Morton S. C., ..., James A. E. (2017). Caregiver integration during discharge planning for older adults to reduce resource use: A metaanalysis. Journal of the American Geriatrics Society. Advance online publication. doi:10.1111/jgs.14873 [Context Link]


U.S. Department of Health & Human Services. (2016). Caregiver resources & long-term care. Retrieved from[Context Link]