Gary Epstein-Lubow, MDThe first place I worked after completing my geriatric psychiatry training was an outpatient neurology clinic devoted to memory disorders. I soon realized that most patient encounters included other people who, in my opinion, could benefit from my attention: family caregivers—spouses, adult children, close friends, significant others, and occasionally parents—who usually accompanied my patients on their visits and had needs that were not being addressed.
I solved this dilemma of how to work with family caregivers through two action items. First, I honed my personal style to allow multiple opportunities for the patient and family members or friends to report concerns and ask questions. Second, I provided reliable avenues for a designated family caregiver to contact me after the patient visit.
I continue this approach today in my work with hospitalized patients.
In January, I had the privilege of attending a public session held by the Institute of Medicine (IOM) of the National Academies in Washington, DC entitled, "Perspective on Family Caregiving for Older Adults.”
It was the first in a series of public meetings the IOM is holding as part of a study on Family Caregiving for Older Adults. One of their charges is to describe options for “best-practices” to build partnerships between clinicians, patients and their family caregivers.
A second public workshop is planned for April 17, 2015 in Irvine, CA entitled “The Diverse World of Family Caregiving.” Three panels are planned for this event:
- Changing Faces in America: Implications for Older Adults and their Families;
- Perspectives from Providers: How Social Service Agencies Address Issues of Cultural Diversity; and
- Beyond Race and Ethnicity: Additional Issues of Diverse Populations.
I strongly encourage anyone with interest in family caregiving to register to attend the April 17th workshop. And if you cannot be there in person, you can still participate online through the IOM webcast. Registration information is available on the IOM website.
As described by the IOM:
The "... committee will develop a report with recommendations for public and private sector policies to support the capacity of family caregivers to perform critical caregiving tasks, to minimize the barriers that family caregivers encounter in trying to meet the needs of older adults, and to improve the health care and long term services and supports provided to care recipients."
Information about the study, including the committee membership, is available on the IOM website.
A number of experts who are members of the Hartford Change AGEnts Dementia Caregiving Network were selected by the IOM to serve on the Family Caregiving for Older Adults study committee.
The Dementia Caregiving Network (DCN) was initiated in January 2014 under the Change AGEnts Initiative, which is funded by the John A. Hartford Foundation. The interprofessional Hartford Change AGEnts Initiative leverages the Foundation’s powerful community—helping its scholars and grantees learn from and support one another while they adopt, evaluate, and sustain changes in practice and service delivery that improve the health of older Americans and their families.
Through the Initiative, the DCN was formed to bring together top experts around the country with the goal to achieve improvements in services, supports, and care for persons with dementia and their family caregivers. The DCN is comprised of nationally recognized leaders with expertise in practice, policy and research related to caregiving and dementia.
The DCN members selected by the IOM to serve on this family caregiving study are Laura Gitlin, PhD, Johns Hopkins University Schools of Nursing and Medicine; Lisa Gwyther, MSW, LCSW, of the Duke University School of Medicine; and Alan Stevens, PhD, the Centennial Chair in Gerontology at Baylor Scott & White Health and professor at the Texas A&M University Health Science Center
As a member of DCN myself, I found the IOM public forum I attended in January to be tremendously helpful. The forum included three expert panels:
- What Do Family Caregivers Experience, Want and Need?;
- Family Caregiver Interactions with the Health Care System; and
- Selected Legal Issues in Family Caregiving.
Presentations from the panelists were compelling. Comments and questions from the committee members were direct and insightful, confirming an environment dedicated to getting the facts correct.
One key theme repeated throughout the panels was that family caregivers are often not identified and not included in health care decisions. These two issues are priorities identified by the DCN. The DCN is working to develop practical solutions including reliable and culturally sensitive tools that may be embedded in electronic health records and elsewhere, to identify persons providing care to family members or friends, leading to better involvement of family caregivers in patients’ health care.
The IOM has posted videos and slide decks of all of the day’s presentations.
It is important to note that this IOM activity is designed to address family caregiving for older adults in general, and is not specific to dementia.
The IOM Family Caregiving report ... will provide a comprehensive description of the barriers and challenges that family caregivers must overcome to aid older adults, and it will deliver national-level direction toward effective solutions that span health care, behavioral health, and social supports and services.
In addition to participating in the April 17 public workshop, I also highly recommend viewing the IOM's posted materials from the January meeting and registering for the email list serve.
The meeting materials are a reminder that there is a developing body of evidence, tools, and resources that family caregivers, patients, and clinicians could potentially use. Today, comprehensive care such as this is the exception. I am lucky to work in a health care system with the flexibility to support my practice style; however, collaborative engagement with patients and family caregivers is not easy.
The IOM Family Caregiving report will be a major advance toward successful solutions. The report will provide a comprehensive description of the barriers and challenges that family caregivers must overcome to aid older adults, and it will deliver national-level direction toward effective solutions that span health care, behavioral health, and social supports and services.
The IOM Family Caregiving report is expected to be released in the Spring of 2016. In anticipation of its publication, the Hartford Foundation, in partnership with the Gerontological Society of America (GSA), has provided funding to implement the recommendations of the report.
Let’s keep the process going. Please consider attending or viewing the April 17th public workshop. And, be ready for implementation efforts starting next year!