Spring 2008

Education Lays the Groundwork
By James Siberski, MS
Aging Well
Vol. 1 No. 2

The client was a 57-year-old man diagnosed with Pick’s disease. The five “students” were the client, his wife, and their three children.

The client, Mr. D, was a father, a spouse, and a professional with a master’s degree and a successful career. As his illness developed, he became somewhat off-color in his communications, used poor judgment in making some business decisions, and began to gamble (which his family learned only after his $1.5 million loss). When his wife noticed a personality change and became concerned about mental illness, she arranged for a comprehensive assessment in a hospital that was well respected for its expertise in geriatric issues. When he was diagnosed with Pick’s disease, the family sought a second opinion and received the same diagnosis. I was retained as the geriatric care manager (GCM) to assist in Mr. D’s care and management.

At the residence, I was met by Mr. D, his wife, and two daughters—four of my five students. Because the son lives on the West Coast, we never met. Since the diagnosis was not in question and medical treatment was already in place, addressing his behavioral issues was the first priority. A treatment plan was needed with interventions and programs designed to manage Mr. D.’s current behavior and anticipate his future needs.

Having read the reports from the hospital and the second opinion, I was prepared for the initial meeting in the family’s living room. I met with Mr. D and evaluated his current behavior and condition. In Mr. D’s absence, I asked the family to describe the current situation and noted their responses. Later, when Mr. D rejoined us and I solicited questions, the spouse and daughters asked several. 

As a GCM, I educate by listening to questions and concerns, assessing reading and educational levels, evaluating current knowledge base, developing an individual curriculum, providing information as can be tolerated, determining understanding and interest, and adjusting as necessary.

Developing a Plan
Initially, the GCM must listen carefully to all questions from all parties in order to provide answers and understand what clients need to learn about the disease, interventions, prescribed medications, and anticipated results, as well as the future of the situation and the course of illness.

Secondly, the GCM must assess each individual involved in the situation (absent or present) in terms of reading and educational levels, current knowledge, and motivation for learning about and participating in the client’s care.

Mr. D’s wife, a high school graduate, wanted to know whether she or the children could “catch” the disease. The older daughter, a nurse, wondered whether there were stages of the disease and what the future held for her father. The younger daughter, a second-year college accounting major, asked “What the hell was a pick?” The absent son needed to first learn about dementia first and then about Pick’s disease. He did not understand what the fuss was since he believed his father’s memory was fine and his gambling just mischievous.

Except for the nurse, the family’s understanding of Pick’s was limited. Since the curriculum should be basic information for most of the family and advanced for the nurse, I recommended a book by Mario E. Mendez and Jeffrey L. Cummings, Dementia: A Clinical Approach. It discusses Pick’s, listing three stages that patients experience and the symptoms during each stage. Additionally, it indicates that in some cases, the disease continues for 20 years. Eventually, the family will need this information and the nurse, having a better understanding of the disease, will be able to assist the GCM with the rest of the family in the future.

Keeping It Relevant
The GCM must utilize the information in a way that does not overwhelm any family members. Remember that they are dealing with dysfunctional behavior on a daily basis, so providing numerous brochures, books, etc., without guidance and opportunities for discussion may increase stress levels and ultimately impede the learning that could help them cope.

Assessing learning and interest is critical in assuring the family’s comprehension. Initially, the son in this case showed little interest, as indicated by his continued belief that his father was simply misbehaving. However, he was eventually supportive of the family’s efforts. The nurse requested additional information, and the wife and other daughter slowly learned how to deal with Mr. D.

The use of educational material is usually limited only by imagination and effort. When the proper educational groundwork has been put in place and it’s unlikely to overwhelm any family members, the GCM can use multiple materials to educate, such as brochures, books, drug company literature, tapes, and Internet links. There are helpful Web sites, but GCMs can also correct, clarify, and reeducate families about erroneous or harmful online information.

The GCM’s consultation report is also a learning tool. Rather than simply indicating in the report that Mr. D needs activities, use the report to teach. Note that Mr. D needs to find a job or activity that he can perform for the short term until his disease advances. Mr. D is less likely to be compliant with the GCM’s wishes and behavioral expectations if he has nothing purposeful occupying his time. If he has significant periods of unoccupied time, he will ultimately fill those voids with behaviors found to be dysfunctional. Consider his past strengths in choosing an activity he will deem useful.

Selecting the Ideal Facility
The selection of current and future placement can be complicated. Mr. D likes to walk and is drawn to populated locations. This increases opportunities for his inappropriate behavior due to his disease (i.e., urinating on a fire hydrant because he needs to void), which is usually interpreted as deviant as opposed to being disease driven. Therefore, when available, I recommended a facility in a rural location that would allow him to walk safely yet limit his contact to situations where his social inappropriateness would be problematic. Explaining recommendations is both educational and helpful for families and staff.

When Mr. D was ultimately placed in a supervised and locked residence because of his tendency to wander, the family was prepared. His wife came to terms with her husband’s disease, adjusted better than expected, and provided genuine support for Mr. D. As a nurse, the older daughter was able to guide family members—although, at times, the brother was difficult—and support their efforts to the point that the services of the GCM became minimal. The other daughter followed her sister’s lead and was able to deal with her father’s behavior and illness. Since the prognosis for Pick’s disease is not positive and offers little upside potential, there will not be a happy ending. However, as a family, they all seem to love Mr. D, and as students, they all scored between a B+ and an A- for caring and coping together.

Education is one of the best tools for working with families.

— James Siberski, MS, is the coordinator of the Gerontology Education Center for Professional Development and an assistant professor of gerontology at Misericordia University in Dallas, PA, and an adjunct professor of psychiatry at Penn State University.