Imagine you can no longer remember your beloved grandchild’s name. You forget how to sign into your computer. You’re sure it’s early in the evening when you hear your son’s familiar voice on your cellphone saying, “It’s midnight; why are you calling?” Not only that, but you don’t remember dialing anyone’s number.
According to the World Health Organization, dementia affects more than 55 million people worldwide, with nearly 10 million new cases every year. Alzheimer’s disease, the most common form of dementia, accounts for 60 to 70 percent of global cases. In an article published on the National Institutes of Health website, the Alzheimer’s Association estimates that 6.2 million Americans aged 65 and older are living with Alzheimer’s today, making it America’s sixth-leading cause of death. That number could rise to 13.8 million by 2060. Finding a quick fix or easy solution seems unlikely. Outside of genetic factors, the only apparent causes scientists have found are the plaques and tangles on brain scans, and even this research has been called into question. Most importantly, there’s still no cure.
What we do know is that all forms of dementia interfere with our ability to make the intricate cognitive connections that help us function in our day-to-day lives. As dementia worsens, cognitive awareness declines, and our ability to express ourselves verbally suffers. There’s also grief, anxiety, and shame as basic cognitive tasks become tripwires, turning an ordinary day into an obstacle course. Coping with dementia requires courage and a willingness to find alternative ways to live.
As a therapist, when you work with this population, you’re rarely working with the client alone: you’re also helping family members balance the ongoing needs of an ailing parent or spouse while still managing their own lives. Supporting or caring for someone in cognitive decline can be emotionally wrenching, physically draining, and financially costly.
With this many Americans in need of mental health support tailored to the challenges of living with dementia, why are so few therapists working with them? After all, researchers have confirmed that individuals in the early stages of dementia can benefit enormously from traditional psychotherapy. Often, these clients know they’re having memory issues that will worsen with time—which contributes to emotional distress as they worry about future losses. Therapists are far better trained to help clients mourn losses than family members and activity coordinators at memory-care facilities. And even when dementia worsens and short-term memory falters (in a condition known as mild cognitive impairment), a client’s long-term memory often remains intact. Important work supporting a sense of identity, gratitude, vitality, and meaning can still be done with a person’s early memories.
It’s understandable that many therapists shy away from dealing with dementia. They may think they don’t have the right skills, or they may hold mistaken beliefs about working with elder clients in general. It requires creativity and imagination, but as psychotherapists, we’re well equipped not only to lessen the suffering of people with dementia, but also to empower caregiving family members and friends who may otherwise become overwhelmed in their attempts to do the same.
“I’ve Been Demoted”
Deedee was referred to me when she was moved from assisted living into memory care. The activity director called me because she didn’t know how to help her. Despite a declining memory, Deedee had always enjoyed socializing and doing things with other people. Now, she refused to come out of her apartment.
On the phone, Yvonne, Deedee’s daughter, sounded resigned. “She always loved being around people. She was very talented. It’s like she’s someone else now.”
“Really?” I asked, sensing an opportunity to learn more about this woman who’d become a hermit in the space of a few weeks. “What were her talents?”
“She loved playing the piano and singing,” Yvonne told me. “She knew every song by The Andrews Sisters.”
When I met with Deedee in person, she was sitting in her favorite chair in the corner of her room, seemingly in her own world, as sunlight illuminated her scalp through thinning gray hair. She looked small and frail, but she held her chin high.
“Why won’t you come out of your apartment?” I asked Deedee. “I hear you love music.”
She shrugged, and in a terse, sharp voice, said, “I’ve been demoted.”
What I believe she meant was that she didn’t like having to live in memory care, where the activities felt demeaning to her. Her world was shrinking. She was losing parts of herself that had opened doors in the past, connected her socially, and helped her feel special. As her sense of her own value diminished, so did her desire to engage with the world around her.
When I began working with Deedee, the memory-care facility director told me they’d tried to support her social activities and musical skills. They’d sat her next to others with similar interests and even invited her to play the piano. But because Deedee had forgotten how to hold small talk or play music, these attempts to engage her had gone nowhere. On the dementia abilities continuum, she fell into the less-abled category.
I created the dementia abilities continuum to help families recognize how they’ll need to adjust their communications and interactions with loved ones over time. I wanted to remind families and professionals that people living with dementia still have abilities that can keep them engaged in meaningful ways. The continuum has three categories: mostly-abled, less-abled, and un-abled. In the mostly-abled category, the client has difficulty with short-term memory, but long-term memory remains. In the less-abled category, long-term memory and cognitive skills are compromised; physical issues with balance, walking, and perception may occur, with an increase in confusion. In the un-abled category, symptoms are severe, cognitively and physically, and the client requires help with all activities and needs around-the-clock supervision. Yet even in this category, family members can find creative ways to connect with their loved ones, such as through music, touch, and aromatherapy.
My goal with Deedee was to help her engage with her world in ways that felt positive to her now. Because focusing on her current strengths, rather than on her declining abilities, would give her and her family hope, I consulted with her daughter about her mother’s musical tastes before my visit and brought playlists to our sessions so we could listen to songs together. One day, she surprised me by singing along to an Andrews Sisters song. She had a rich, melodic singing voice—quite different from the one in which she said, “I’ve been demoted.” I kept bringing music to our meetings, and she started singing again. Sometimes I sang along with her.
Singing may not seem like typical psychotherapy, but Deedee was certainly changed after these sessions. She looked more cheerful and grew talkative after our duets. Sometimes, she even shared about events from her childhood. Because therapy isn’t linear, especially with clients like Deedee, our work was less about helping her move toward a predetermined goal and more about being fully present and attuned. I had to let go and relax. I approached each moment between us as if this was all there was. Years ago, therapists were taught to reorient clients living with dementia to reality, but since then, we’ve learned that this technique feels dehumanizing and causes agitation.
Yvonne and I met a few times a month. She was struggling with anticipatory grieving as she imagined the losses that still lay ahead. For people observing a parent or spouse in cognitive decline, anticipatory grieving has been likened to a long goodbye. I helped Yvonne accept a fuller range of emotions. Although she loved her mother, she struggled with resentment and anger toward her for having controlled her excessively throughout her childhood—which made it more challenging to visit with her. Most of all, Yvonne felt sad and guilty about not having had a good relationship with her, yet I believed I could coach her to connect with her mother in a new way, as Deedee’s dementia seemed to have softened her.
In one session, I worked with Yvonne and Deedee to create a genogram. Genograms offer therapists a nonthreatening way of gathering information and communicating about the past. Using a genogram can bring a family’s history to life and help clients relax into a larger, intergenerational perspective. Halfway through the genogram, Deedee stood up and moved as quickly as she could across the room. She pulled some photo albums off one of her shelves and put them down on a coffee table. I took a break from taking my genogram notes and watched the two of them go through the albums together.
“Here’s a picture of Aunt Gracie!” Yvonne exclaimed. She showed Deedee a black-and-white photo of a young woman in a checkered dress on a bicycle.
“Like you,” Deedee said, touching the picture with a crooked index finger. “Strong. I couldn’t push her around, either.” A look of tenderness crossed Yvonne’s face. Even with dementia, Deedee seemed to be validating Yvonne’s experience of her as a domineering, controlling mother at times, and to be appreciating her for who she was.
When creating genograms, I suggest therapists focus on people, places, and things that once touched their client’s hearts and brought joy—passions, hobbies, interests, experiences, and accomplishments. Supporting a big-picture view can help clients and their family members access positive long-term memories while acknowledging and embracing the cycle of life from one generation to the next.
Eventually, Yvonne and I approached the activity director and suggested they hold an event where Deedee could sing for an audience. At least 30 residents showed up for her debut performance. Fresh flowers were placed in vases around the room and light appetizers were served. Yvonne had arranged her mother’s hair into an elegant bun, and she wore a long, blue dress. The performance was a success, with Deedee singing along to the music just as she had in our private meetings. We even videotaped the event so she could relive it as often as she wanted. Watching her, I had tears in my eyes. She looked so happy and proud.
Deedee started coming out of her room more often and socializing with other residents. Many of them had been amazed to discover that she had such a beautiful singing voice. For weeks thereafter, they complimented her.
That day had helped her feel that her life still mattered.
When My Work Became More Personal
In 2002, my own mother was diagnosed with probable Alzheimer’s. She was 71, and as it turned out, she lived another 16 years. While much of my practice had focused on working with people living with dementia and their families, the diagnosis still caught me off guard.
My mother and I had always been able to communicate with each other honestly and openly, but as her dementia progressed, I knew the way she related to me would change. It was painful to see her cognitive capacities declining, but I was determined to find opportunities to continue connecting as mother and daughter.
One such opportunity came when she was living in a nursing home in Atlanta. My father, whom she’d long been separated from, had died, and I’d attended his funeral in Florida. Immediately upon returning, I stopped by my mother’s nursing home. She looked excited to see me.
“Well, hello again!” she exclaimed.
“Mom,” I said quietly, sitting in front of her on a low stool. “Dad died. I went to his funeral.”
Her face appeared impassive. Then, suddenly, she yelled, “Good for him!”
I was stunned. On the one hand, I could understand her reaction. She’d divorced him 25 years earlier; but on the other hand, it was important to me that she see how sad I was. “Mom,” I said, “he was my father.” I started crying. I loved my father, and he had died. I loved my mother, too, and I wanted her to care about my pain, but I wasn’t sure she could.
Then, my mom reached toward me, and I leaned forward into her arms. She held me as I sobbed, rubbing my back patiently and tenderly, just as she had whenever I’d gotten upset as a child. Neither of us spoke for a long time.
Despite her dementia, she hadn’t forgotten how to be a mom, and I’d received her mothering. That experience motivated me to help my clients stay open to what was possible and remain connected.
Singing may not seem like typical psychotherapy, but Deedee was certainly changed after these sessions. She looked more cheerful and grew talkative after our duets.
When my mother was in the advanced stages of Alzheimer’s, people would ask me, “Why do you visit her if she doesn’t even recognize you anymore?” Although people generally mean well and want to offer support, their views of elders and dementia can sometimes contribute to the experience of disenfranchised grief. I felt this as I grieved for my own mother. It was hard for people in my life to understand why I’d willingly put myself in situations with my mom where I’d feel the complicated, painful emotions visiting her evoked in me. It was as though others viewed my grief as an avoidable experience, or as pointless and self-inflicted.
My response was always, “She may not know me as her daughter, but she does know me as a loving person.”
Nontraditional Approaches with Dementia Clients
After reading The Heart’s Code: Tapping the Wisdom and Power of Our Heart Energy by psychoneuroimmunologist Paul Pearsall, I grew interested in the idea that the heart has its own intelligence and memory system. I began wondering if memories could still be cultivated from my clients’ hearts, even when their short- and long-term memories had faded. Soon I was asking my clients what had happened in their lives that had touched their hearts. The more I took this approach, the more I noticed my clients relaxing and sharing surprising memories.
Over several decades of working with clients in varying stages of cognitive impairment, I’ve come to appreciate the power of out-of-the box therapeutic approaches, particularly ones that don’t rely exclusively on talking. One approach I created to support heart-centered remembering is literally out of a box. I call it the grab-and-go activities box. First, you work with your client to identify some of their former or current interests. Then, you gather items related to those interests and place them in a box. Your client can take the items out of the box one at a time, touch them, look at them, and—if they’re able to—share any memories that arise connected to each item.
I had a client once who used to go to every Detroit Tigers baseball game as a child. Later, he moved to Atlanta and attended every Braves game. By the time I met him, his dementia was advanced. He was in a wheelchair. He became confused and agitated in environments outside his own home. It would’ve been hard to take him to an actual ballgame. Maybe we can bring the game to him, I thought.
I showed his daughter and granddaughter how they could create a grab-and-go activities box out of baseball-related items: a pitcher’s glove, two baseball caps with a Tigers and a Braves logo on them, Cracker Jacks, baseball cards, score sheets, and a bag of peanuts. Once or twice, while exploring his items, he hummed, “Take me out to the ballgame.” He even recalled seeing the Detroit Tigers win the world series. His family loved using the box because it helped him refocus on something that was meaningful to him. And occasionally they’d bring him a hot dog wrapped in aluminum foil to snack on. He’d comment, “There’s nothing better than being at a game and eating a hot dog!”
On occasion, we may find ourselves breaking standard therapy protocols with clients living with dementia. When my client Jim was in hospice care, he could barely move and was unable to get out of bed. One of the ways I visited with him was to play soothing music on my phone that I knew he’d enjoy. When he got agitated, I’d lie down in bed next to him and rub the bald spot on his head. This seemed to calm him.
Helping People Feel Less Diseased
Our goal as therapists is to help people feel more at ease and less diseased. We’re trained to set aside our judgments and support people experiencing loss. Virtually all therapeutic modalities offer a range of interventions we can draw on or tailor to support clients experiencing memory loss and cognitive impairments and to help their families.
If we look past our biases, we may find that people living with dementia have more in common with other types of clients we see in our practices than we first realize. No matter where a client falls on the cognitive-abilities spectrum, they want to be treated with respect and be seen for who they are, as a whole person.
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Nancy Kriseman, LCSW, has more than 30 years of experience offering Counseling, Consulting and Training for Elders, Families & Professionals.