Seeing the 'invisible patient' in LTC

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Eleanor Feldman Barbera, Ph.D.
Eleanor Feldman Barbera, Ph.D.

Jane Gross' recent post 'Seeing the Invisible Patient' in the “New Old Age” blog of the New York Times discusses how professionals often ignore the needs of caregivers of the elderly because they are focused on their identified patient. As the author states, “Not once in the years I cared for my mother did any of her physicians ask me how I was doing.”

While the article centers on the burdens of caregivers in the community, it got me thinking about whether we're meeting the needs of families whose loved ones are in long-term care.

What are the burdens of family members in LTC?

Some families have been down a long road of illness with their loved one and are physically and emotionally depleted. Others have had the shock of a sudden shift in the condition of their relative and have been swiftly thrust into the world of LTC. Virtually all of the families are coming into a system that's new for them and they could use our help in successfully navigating this change.

Benefits to the facility

Addressing the needs of family members can:

• Increase the likelihood of families making positive contributions to the lives of the residents, which is good for the residents and reduces the workload of the staff. If families are purchasing clothes, for example, that's one less task for staff members.

• Improve satisfaction with our services and increase the chances that they'll recommend our facility to others.

• Provide a benefit that appeals to the adult children decision-makers and makes our organization more competitive.

Below are some ways to creatively and inexpensively attend to the needs of families:

Education — It's a fair assumption that (a) family members are trying their best, and (b) they have no idea how your organization works and how they can support their loved one within it. Try offering informative printouts on topics such as “Tips for a Successful Visit” (a free download available at MyBetterNursingHome.com) or “5 Steps to Becoming a Part of the Treatment Team,” or “The Savvy Resident's Guide,” which gives an overview of how nursing homes work.

Support — Families benefit from having support around their decision to place their family member in LTC and in dealing with the illnesses of loved ones. Family councils, welcoming committees, and topical groups (think “End of life decision-making,” “Helping your loved one adjust to LTC,” etc.) are all good ways to engage families. A list of referrals to community resources can be made available for those who need more assistance than your staff members are able to offer (the Alzheimer's Association, for example, or names of local mental health specialists).

Systems that facilitate participation — Busy families need easy ways to communicate with staff, such video calls for those who can't make meetings in person, email addresses for staff members (to reduce phone tag), and information posted on intranets and websites such as “how to arrange a home visit,” or “foods for people on puree diets.”

Meeting the needs of family members requires a shift in thinking from “we are treating the resident” to “we are treating the family unit.” In my experience, we're often doing this anyway, but with a piecemeal, reactive approach. Using a coordinated, proactive strategy can enhance care, prevent problems, and ultimately save time and effort.

Eleanor Feldman Barbera, PhD, author of "The Savvy Resident's Guide," is a 2014 Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is the Gold Medalist in the Blog-How To/Tips/Service category of the 2014 American Society of Business Publication Editors Midwest Regional competition. A speaker and consultant with nearly 20 years of experience as a psychologist in long-term care, she maintains her own award-winning website at MyBetterNursingHome.com.


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