On the Other Side of the Table: Receiving the Diagnosis

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As a professional working with communication disorders for 13 years, I find it second nature to complete evaluations and report results and recommendations to families. Due to my graduate training and a couple of wonderful professors—in addition to an understanding of assessment and treatment of speech/language impairments—I feel I came away with effective skills in counseling and empathizing with families in the face of an unexpected diagnosis.

It was not until recently, however, that I found myself on the other side of the table, watching my father go through neurological and cognitive testing and hearing the impending diagnosis: moderate Alzheimer’s.  Though I was confident he was showing clear signs of dementia prior to the evaluation, as I sat with him during the exam, it was difficult, yet eye opening, to watch him struggle through simple language and memory tasks that previously would have been so easy for him.

Even more eye opening was his own unawareness of the problem, his inability to understand the reason he was seeing a neurologist in the first place, and the fact that most of his responses were incorrect, though he thought he nailed them!

At home with my mother, more eye openers came very quickly.  Though I primarily work with children, I have always been a big advocate for family and parent training, and I have sought to educate and include parents and family members as much as I can in the treatment of my clients. I have learned that my skills—what comes naturally to me, how I engage with children, how I intuitively attempt to promote speech and language at every turn—are not skills I can assume that parents and caregivers possess, and this understanding has helped me shape my family/parent education model.

With adults, however, I haven’t always thought in those terms.  I have come to realize that I tend to assume that adults, especially educated adults without impairment, should know how to engage with other adults who have cognitive-communication impairments.

It took me by surprise that my mom did not possess the understanding or the skills to handle my father’s memory lapses, lack of retention, confusion, reduced reasoning skills, and disorientation to time, place, and people.  The changes that are needed in their current home environment and in my mom’s interactive style with him appear obvious to me, and I can immediately “frame-switch” with him, changing the way I respond, react, reassure and redirect due to his current deficits. My mom, however, doesn’t know where to begin. Though she is an intelligent and very caring person, she appears stuck in the relational style she has always had with him, demonstrating by her words and actions that she expects from him the same sharpness and clarity of mind.

There is no overt denial of his condition, but there appears to be what I’m calling a “relational denial.”  She knows his cognitive function is progressively deteriorating, but she does not know how to modify her way of interacting with him. She cannot even identify that her expectations have not changed. The take-home point that has been solidified for me is this: One of the most important and effective roles I have as a speech-language pathologist serving adult populations is caregiver education and training.  I realize this is not a breakthrough discovery in the field of speech-language pathology, but I believe many of us do not spend enough time giving caregivers the tools and strategies to help themselves and their loved ones.

Even though my mom and I talked openly, honestly and lovingly about the needed changes, she could not readily implement them. Switching her frame of mind and subsequent actions and reactions has required much intentional modeling and repetition on my part. It has required identifying how she automatically responds and reacts, then identifying what a more effective way to respond and react would be to reduce her own frustration and his.

One discussion session would not have been enough.  A set of handouts or a brochure would not have been enough. Recommending a good book on Alzheimer’s would not have been enough.

This experience has caused me to evaluate not only my views on caregiver education and training for adult populations but also my investment in a hands-on family education model that is thorough, caring, and thoughtful. Families and caregivers desperately need our expertise in practical ways to effectively cope and help their loved ones!

 

Ana Paula G. Mumy, MS, CCC-SLP,  is a trilingual speech-language pathologist who provides school-based and pediatric home health care services in Colorado Springs, Colo. The author of various continuing education eCourses, leveled storybooks and instructional therapy materials for speech/language intervention, she also offers resources for SLPs, educators and parents on her website The Speech Stop.

The Top 10 Take-aways for CSD Work With Families

familyportraitAccording to my dusty hardcover Webster’s dictionary, a family is defined as: All the people living in the same house; household, 2) a social unit consisting of parents and the children they rear…” (Neufeldt, V, 1988). Since this was dated, I thought I should go to The Free Encyclopedia – Wikipedia. They define family as: “In human context, a family is a group of people affiliated by consanguinity, affinity, or co-residence. In most societies it is the principal institution of the socialization of children…”

In our profession, we have had to make a mind shift from client-based services to the child to family-centered services focused on collaborating with and supporting the family. In this partnership, all people involved acknowledge that each possesses unique skills and knowledge, and they demonstrate trust and respect for one another. Professionals recognize the decision making power of the parent.

Why is family-centered care important? Outcomes! For a child to reach his or her fullest potential, it is essential to have appropriate resources, qualified professionals and family involvement. In family partnerships, families receive support not only from professionals, but from other families with similar circumstances and from the community at large.

Here are the top 10 take-aways for the next time you work with a family:

10) Time. As a professional everything is fast paced. After all time is money — and you serve a lot of people. For a parent, however, time is very slow; they are constantly waiting.

9) Don’t make assumptions or generalizations. Every family is unique with very specific needs. Present all options…don’t be biased in what you say.

8) Don’t label families—or each other.

7) Don’t make inappropriate comments about your profession. Talking negatively about your workplace or another professional reflects poorly on you. The average “wronged” customer will tell 25 others about the bad experience. Don’t reinforce negative experiences.

6) Be confident but not arrogant.

5) Communicate! Communicate! And communicate some more! You cannot overstate anything. Monitor your tone of voice, body language, rate of speech, and be mindful of professional jargon.

4) Listen! Listen! And listen some more! Show the family you are listening (body language). Provide feedback, defer judgment, and don’t try to rescue—empathize.

3) Acknowledge the parent’s efforts and strengths. No matter how small it is — acknowledge something positive.

2) Keep in mind the lack of consistency in our field. Families will see a variety of specialists, and each will provide an opinion about what the parents should do. “This method is better because”…or “You should try this.” The various opinions can be confusing and overwhelming for the family. Be respectful of one another.

1) Respect and patience. Remember parents are people too!

To learn more about family support and family-centered practices, check out the transcript of an “Ask the Expert” online chat about these services, held April 30 by ASHA Special Interest Group  9, Hearing and Hearing Disorders in Childhood.

Tamala Selke Bradham, PhD, CCC-A, is coordinator of ASHA Special Interest Group 9, Hearing and Hearing Disorders in Childhood. She is also associate director of quality, protocols, and risk management in the Department of Hearing and Speech Sciences at Vanderbilt University. She and Joni Alberg, PhD, executive director of BEGINNINGS for Parents of Children Who Are Deaf or Hard of Hearing, Inc., in Raleigh, N.C., answered questions during the SIG 9 online chat.