Dr. Joseph Gaugler Dr. Joseph Gaugler

Editor’s Note: Health AGEnda recently spoke with Dr. Joseph Gaugler, professor at the University of Minnesota School of Nursing and co-editor (along with Robert Kane, MD) of the new book Family Caregiving in the New Normal. This unique work addresses challenges and offers cost-effective solutions via a comprehensive “roadmap” for family caregivers, clinicians, and policymakers. It also includes chapters from members of the Hartford Change AGEnts Dementia Caregiving Network, a multi-sector, interdisciplinary team of leaders with expertise in practice, policy, and research related to caregiving and dementia whose mission is to achieve improvements in services, supports, and care for those with dementia and their family caregivers.

What is the “New Normal” for family caregivers?

We have entered an era where a number of sociodemographic, historical, and economic trends are converging which threaten the status quo of our heavy reliance on families as the primary providers of long-term care. Although some policy initiatives and innovations acknowledge the role of family caregivers and their need for support, efforts have been piecemeal and not coordinated at the federal, state, or local levels.

As a result, there are now potentially serious consequences. For example, there will be fewer family caregivers available to provide help to older persons in need in the upcoming decades, and politics have influenced affordability and accessibility of community-based supports. The aftershocks of the Great Recession, coupled with the massive change to how health care will be delivered and paid for, will further influence how family caregiving is provided in the United States. Increasing duration and prevalence of chronic illnesses among both older adults as well as younger populations (e.g., diabetes) may also intensify the pressures family caregivers face in the future.

Despite this, there are a number of emerging care models, technological innovations, and information resources that could help navigate the "perfect storm" of threatening trends to family caregiving. But urgency is needed to galvanize institutions and organizations to meet such challenges.

Family_Caregiving_New_Normal_cover_200pThe first section of this book offers views on family caregiving through a personal lens. Why did you choose to incorporate personal stories and how/why did you choose these particular narratives?

A major professional emphasis of mine is to try to "translate" the considerable scientific and clinical innovations that have occurred to benefit families and professionals. I have done this through community engagement and education, such as the annual Caring for a Person with Memory Loss conference that we hold here at the University of Minnesota. We usually have 250-350 attendees each year, and this was the eighth year we have held the conference.

As the years have passed and I have tried to address the gaps between my science/scholarship and the pressing needs of families, I find that my own experiences and much of the research and work we have done in family caregiving sometimes resonates with the day-to-day needs of families. But it sometimes feels that we have a long way to go to meet the needs of families and professionals to help them navigate their caregiving journeys.

With this in mind, I wanted Family Caregiving in the New Normal and the various chapter contributors to not only highlight the challenges to family caregiving and possible solutions, but to also refer back to the personal stories shared by family caregivers in Chapters 2 through 5 to actively show how the more "academic" material of the book had relevance to the everyday challenges and experiences of families and professionals. In this way, Family Caregiving in the New Normal becomes more grounded in the day-to-day lives of family caregivers, and helps us better identify the solutions that can assist both individual families and societies at-large.

Who should read Family Caregiving in the New Normal?

The audience for Family Caregiving in the New Normal includes policymakers at the federal, state, and local levels; health systems and businesses who either provide care to families of older adults with health conditions or are interested in preparing for future caregiving needs of employees; clinical providers who work with and treat family caregivers; and academic audiences who have scholarly and clinical interests in family caregiving.

How can family caregiving be sustained in the future?

When considering the future of family caregiving, there is good news. The recognition that family members play the key role in long-term care in the U.S. has grown considerably, thanks not only to increased scholarship on the issue, but also the extensive advocacy work of organizations such as the John A. Hartford Foundation, AARP, the Alzheimer's Association, the Family Caregiver Alliance, and the American Geriatrics Society. The rapid emergence of technologies will not only increase the amount of information and education easily available to family members, but will also help to enhance care coordination and chronic disease management apart or in concert with traditional health care systems.

Policy advances, such as the Caregiver Advise, Record, and Enable (CARE) Act, continue to make inroads across multiple states and emphasize the important role of families during care transitions. Finally, social media will likely spark a more active, grassroots advocacy movement to ensure that family caregivers' voices are heard in how long-term care is delivered. In the end, it is our belief that this recognition of the importance of family caregivers must be further ensconced in how health care is currently delivered, assessed/evaluated, and paid for in order to ensure that families can continue providing the help to older relatives that we, as a society, so desperately rely upon.

What goals should we be making as a society to improve the care for family caregivers and why is this issue often overlooked in the U.S.?

The disruptive changes that have occurred in the past several decades can be seen as both good and bad news. The bad news is that caregiving is still caregiving, and there may be pressures to get more of it from fewer caregivers. The good news, though, is the increasing recognition of the roles that families play in the provision of such care.

Technologies are now available to potentially enhance care coordination, and more information than ever is available to assist families throughout the course of a relative’s need for help. The continued growth of technology, if harnessed correctly with an eye toward effectiveness and efficacy, could greatly advance how we support caregiving families. For example, understanding how technology could be used to allow for more proactive care of chronic diseases while at home could help prevent many of the crises that can potentially overwhelm family caregivers.

Incorporating technologies into existing, "low-tech" assisted devices that have enhanced independence for older persons (e.g., canes, walkers, grab-bars) could help to reduce reliance on family care. Use of technologies via personalized apps or tools such as personal health records that can be easily accessed by family members of older relatives may help to facilitate the coordination of care and communication across various providers. Similar advances in personalized decision-making tools that harness the power of Big Data could help families better navigate perilous health care transitions.

To some extent, the advent of social media networks that have helped to build online communities may result in solutions that are not “top-down” processes, but instead those that are more quickly and rapidly driven by advocates in these communities (such a development will likely have positive as well as unforeseen consequences). Nonetheless, progressive health care systems such as the Mayo Clinic have begun to adopt strategies to utilize social networks more effectively in health care delivery.

What three things would you say to policymakers right now?

Susan Reinhard and Lynn Friss Feinberg outline some compelling policy goals in their chapter, in addition to the various recommendations provided earlier:

  1. Accrediting organizations, such as the Joint Commission, should prioritize family caregiver needs and address them to achieve quality of care and quality of life for patients.
  2. Assessment tools, if they are to be integrated into service delivery models, should capture what family caregivers actually do (e.g., complex care tasks and management), rather than rely on traditional measures such as help with activities of daily living.
  3. Family caregivers are at the center of care coordination in chronic disease contexts, and new financing and delivery models, such as patient-centered medical homes, should better integrate families into these approaches. Related to this point, making the case for cost savings of family caregiving services/interventions could improve these programs' availability and sustainability to reach more families in need.