It was my “aha!” moment as a counselor. My mentor had captured it in one question: “How do you know it’s not counseling?”
What I had been taught and what I had envisioned as counseling was the Carl Rogers, one-hour, chair-to-chair, face-to-face session, and that was definitely not happening. I was counseling an individual in the middle stage of dementia. I would sit and listen about how she was getting on and off a train and how she wanted to learn to knit again to make clothes for her grandbabies. My client had not been on a train. And as much as I wished for her hands to be OK, they weren’t capable of coordinating the task of knitting because of the impact of dementia.
So, I would just sit and listen — usually right next to her on the couch because she had hearing issues. Sometimes the sessions would not even last an hour. In fact, at times, they lasted only 30 minutes because I could tell she was getting tired. I felt bad and started to fear that ethically I was doing the wrong thing. How could I spend only 30 minutes with this client listening to her repeated story of getting on and off a train and knitting?
I began to wonder whether I was taking advantage of the situation. After all, I was getting paid to work with this client, but the process didn’t resemble what I thought counseling should look like. Eventually, I told the family I couldn’t ethically continue to work with the client because her dementia prevented her from processing. However, the son wanted me to continue spending time with his mother, even if it only involved activities such as drawing.
In my mind, this did not equate to “true” therapeutic process. So, I called my mentor, and that’s when she asked one simple question: “How do you know it’s not counseling?”
I felt the weight and pressure of my boxed-in idea of counseling lift off my shoulders. I consider myself to be an outside-the-box, creative individual. Why had I not considered this to be counseling? In continuing to discuss the situation, my mentor encouraged me to further expand my definition of counseling. “I think we all need to broaden our perspective on what constitutes counseling,” she said. “We get hung up on the picture of therapy and forget that it is all about meeting the needs of the client.”
What makes this situation even more embarrassing is that I specialize in working with individuals with dementia. Whatever their disease stage, I listen to them in the moment, meeting them where they are and identifying the feelings they are experiencing. How were my sessions with this client any different? I was meeting her where she was in the moment and reflecting on her feelings about the adventures on the train and the excitement about the idea of knitting again. It wasn’t my job as a counselor to contradict her story or her sense of her own abilities. It was never about the content. I was that person sitting next to another human being who just wanted to be heard. This situation was beyond counseling techniques and textbook knowledge. This was person-centered empathy at its core. I realized then that even when I question whether I am helping, I am.
Providing a sense of safety and security
Knowing how to respond to a client’s concern — which may or may not be based in reality — can be challenging. For example, I met an individual with late-stage dementia who wanted to leave a locked unit to get to his wife, who was sick. He walked from door to door trying to get out. Although the client’s wife was not sick, at first I didn’t correct his misapprehension. Instead, I asked myself how I would feel if my partner were sick and I couldn’t get to them. Then I said to this individual, “That sounds scary, and I know you are worried.”
In cases such as this one, there is some debate about which technique is appropriate: therapeutic lying or validation therapy. I side on using both techniques to keep an individual calm and limit the potential for agitation and aggression. In this instance, I told the client that his wife was safe, and a sense of calm came over him.
In some cases, it’s most therapeutic to just “go along” with the client. I often meet individuals in the later stages of dementia who walk up to me and say, “It’s been such a long time. It’s wonderful to see you.” Except I have never met these individuals before. But how would I feel if I encountered someone I always enjoyed spending time with whom I hadn’t seen in a long time? I would feel excited. So, I will often respond to these individuals by saying, “It has been a long time. It is so nice to see you again.” Responding like this often elicits a warm smile, hug or handshake from the person.
Sometimes the only choice is to support and affirm a client’s recognition of a painful truth. The client I referenced originally knew that her memory was fading, and that was her worst fear. How would I feel under the same circumstances? I would feel scared. I told her, as I tell other clients in similar situations, that what she was experiencing sounded scary but that she was safe with me, that I was here with her. Letting clients know that they are not alone in their fear is crucial. Individuals with dementia are frequently looking for a sense of safety and security.
In addition to reflecting on clients’ feelings, it is also important to know who they were before the disease. What did they do for a living? Were they a parent? Did they love dogs? What was their favorite holiday? This is where counseling is really out of the box and creative.
Learning clients’ interests presents opportunities to engage them by tapping into all five senses — sight, sound, touch, smell and taste. It also provides opportunities to learn and focus on what they can do rather than what they can’t. How? Envision a client who enjoyed going to baseball games. Unfortunately, the client is no longer able to attend games because it stresses the client to have their environment changed frequently. But what would stop a counselor from tapping into the sights and sounds of a baseball game and encouraging the client to put on their favorite baseball hat and look through baseball cards or pictures, eat a hot dog and, if possible, listen to a game on the radio? As the client enjoys the experience, the counselor could encourage the client to share thoughts and memories about the game. One word of caution: Never attempt to engage a client by asking, “Do you remember?” Also, never underestimate the power of a little humor.
Two of my favorite examples of how knowing clients’ backgrounds can positively affect therapeutic interactions with dementia involve a former member of the military and an ex-government employee. In the first case, I was working in a psychiatric hospital, and an individual with dementia started to get agitated. A case manager I was working with said to this individual, “That is not behavior becoming of an officer.” I was amazed at how this individual settled down. My co-worker had taken the time to learn important details from the individual’s past that could help in his care. The second case involved a client who had worked with the government in a position involving maps. To give him a sense of purpose and an opportunity to engage in something he enjoyed, the staff gave the client maps that he could “work on” throughout the day.
When talking to other counselors about how effective it is to connect clients with what they enjoy, I ask them to imagine themselves in a similar situation. What would they want others to know about them? If they were feeling alone, lost, scared or confused, what favorite sights, sounds, smells, tastes or tactile sensations would soothe them? I know that for me, wearing a cardigan and flip-flops, sipping a pumpkin spice latte, holding a dog, and looking at pictures of Halloween decorations would do the trick.
An overwhelming need
The individuals I have described are only a few of the 50 million people worldwide who currently have dementia, according to the World Health Organization. The increasing number of individuals with dementia is overwhelming. To me, what feels even more overwhelming is the number of counselors I meet who do not have the knowledge and skills to work with someone with dementia. Recently, while giving a presentation on counseling individuals with Alzheimer’s disease, I asked the participants to raise their hands if they could answer yes to the following questions:
1) Do you have a basic understanding of the medical aspects of Alzheimer’s disease, such as symptoms, behaviors, and the process of receiving a diagnosis?
2) Do you have a holistic viewpoint of the person with this diagnosis: a psychosocial history, who they are, what their likes and dislikes are, their perception of their own lives, and their perspective about being diagnosed with Alzheimer’s?
3) Have you reflected on and identified your own biases, stereotypes, and stigma regarding people living with Alzheimer’s?
4) Are you aware of counseling techniques that are effective when working with individuals with the disease?
5) Are you aware of resources that could assist these clients, such as neurologists or other specialists, support groups, and informational literature?
Unfortunately, none of the attendees could answer yes to any of the questions. Admittedly, it is currently difficult to acquire the information that might have enabled them to answer yes. While doing my own research, I found only a handful of articles that discussed counseling individuals with dementia. Of those that did, most focused heavily on caregivers. I do not want to discount the impact of the disease on caregivers. However, those who are struggling with dementia have an urgent need for support. How can counselors meet their needs if they are unable to learn how?
We are living in a time in which you may not hear much about dementia, but its effects can be found around every corner. Fear and stigma surround the disease, making it more difficult for those affected to get help. Almost daily, people who know I specialize in working with individuals with dementia approach me about someone they know who is impacted. I wish I could put on a cape and help them all. My call to the counseling profession and fellow counselors is this: I need your help. Ask yourself if you can answer yes to my presentation questions. Do you have a general understanding of dementia — a disease affecting more than 50 million people? What personal biases and stereotypes may be preventing you from working with these individuals? Do you know which counseling techniques are most helpful when working with people with dementia?
I was speaking with a friend the other day who has early onset dementia. She was struggling with not being able to help more people. I told her that all we can do is help one person at a time. I guess this is my philosophy in counseling. If I help one person with dementia, it is worth it. I will no longer question if what I am doing is counseling or if I am helping, because it is and I am.
Jenny Heuer is a licensed professional counselor specializing in gerontology. Older adults are her area of expertise in clinical practice, teaching, and research. She is a certified dementia practitioner and adjunct instructor at Georgia State University’s Gerontology Institute. Her passion is opening up dialogue about the lived experiences of individuals with Alzheimer’s disease. Contact her at firstname.lastname@example.org or through her website at jennyheuer.wixsite.com/aging.
Related reading: Look for an in-depth cover story on working with clients with dementia, and their families and caregivers, in the January 2020 issue of Counseling Today.