Hope in the Struggle with Dementia

Dementia is a challenge for many older adults. This article by Andrew Steward, the former Masterpiece Living Lifestyle Coordinator for Clermont Park Retirement Community, provides some hope for those who struggle with dementia.

Through my clinical experience in hospice care and research I’ve done related to caregiver burden, I’ve come to believe that being a care partner for someone living with Alzheimer’s or another form of dementia can be far more difficult than living with the disease itself. The length of Alzheimer’s disease can be up to 20 years, and the financial and emotional toll it can have on family members can be devastating. I know that. You know that in a way that hits closer to home than you ever would have asked for.

This article is especially appropriate for family care partners of residents living with Alzheimer’s disease or another dementia.

First of all, I want you to know that it is a great privilege each day I get to spend time with your loved one. From the first week I began working in Goldenrod (our memory support neighborhood) during the Summer of 2014, I would tell that to your family members at the end of each Saturday I came to lead programs. As some of you may know, I have a wide variety of responsibilities at Clermont Park, including managing the fitness center, organizing large community events, as well as leading a champion team that is applying for Clermont Park to become a Certified Center for Successful Aging.

But in the midst of my responsibilities, I want to tell you honestly that my favorite part of this job is simply spending time with your family members. I so enjoy being with them, because they are often so playful, non-judgmental, and loving. I have come to believe that individuals living with dementia have so much to teach the rest of us about living in the present moment. I understand that there are times when the dementia your loved ones experience causes them to express unmet needs that can be tiring and difficult to experience. I also understand that supporting them can be exhausting, and I’m sure sometimes you just want to scream and say “ENOUGH!” “ENOUGH OF THIS TERRIBLE, UNFAIR DISEASE!” Your feelings, whether they be anger, frustration, indifference, or sadness, are completely normal.

But I also want to share with you some hopeful moments that I’ve experienced when spending time with your family members. When things are so difficult and hope seems to be a far away illusion, I think it’s important to be reminded that beautiful moments, however small, can bring light back into your life.

Our team here has a very creative approach in meeting residents where they are at, while living with dementia. I’ve led four programs on an ongoing basis this year in the memory support neighborhood. These have been improving over time. I want to share with you some very hopeful and inspiring moments I’ve had, with the wish that I can share a small light, or even flicker, of hope with you today.

Beats and Rhythm

The first program is rhythmically-based. We use percussion instruments in a large circle. I choose a very simple rhythm, such as two notes together, a triplet, or two pairs of simple rhythms grouped together. I play the rhythm and then ask the residents to repeat them after me individually. Then I ask the group to echo these rhythms in unison. This alone seems like quite a challenge for a large group working together living with a wide variety of stages of dementia. However, the group has been successful in playing in unison. I then challenge them to repeat the rhythm in unison for a specific number of repetitions. I always pick a number that I don’t believe they will be able to do. However, the group has surprised me by being able to play repeated rhythms in unison up to nine times together!

Then and Now

Another program is a reminiscing exercise called “Then and Now.” I bring antique items and we compare them with their modern counterparts. We have a discussion about the benefits and disadvantages of objects from different time periods. We have compared old pocket watches to modern wristwatches, cooking items such as juicers and canning jars, old fashioned cameras, and even an antique cigar box. At one class, the cigar box brought back a memory for a resident of her grandfather. She shared with me the detailed story of her grandpa in Czechoslovakia – how he used to play accordion concerts in bars while smoking a cigar.

A Sensory Journey to the Sea

During another class, the residents and I create a story together using sensory and mindfulness techniques. For example, I start by asking the residents to tell me their favorite memories of going to the ocean. Typically, residents have a hard time remembering any specific memories. We then go through the experience of taking a trip to the beach by experiencing each of the five senses one-by-one. We have residents touch kinetic sand, listen to sounds of ocean waves crashing along the shore, touch seashells, watch videos of ocean animals (including seagulls and seals playing in the water), and smell essential oils such as eucalyptus to imagine a nearby forest. I then ask residents to share a second time about their favorite memories of going to the beach.

Originally, I thought that the structure of this program would draw out stories by the end of the class. What I have found, though, is that residents have most been able to retrieve and describe memories during the actual moment of stimulation with these different sensory interventions. There are different types of responses that are equally positive in varying ways. Some residents have been able to describe their experiences going to the beach and discuss with their peers the differences between their experiences. For example, during one class, two residents discussed the differences between going to the beach in Alabama compared to the beach in Manhattan. Equally beneficial was when a resident who had been silent throughout the program smelled eucalyptus oil and responded with very strong emotion about how she loves going to the ocean with her husband. This emotional reaction is, I believe, just as positive as the response of the two residents who were able to engage with a more intellectual discussion.

Poetic Melodies

This class may be the most exciting. I play a piece of music on my flute that had a story behind it when it was written by the composer. Our goal is to co-create a story about the music with the residents. I play residents examples of different sounds on the flute. For example, I play a very rough, edgy sound and say “This sounds like purple because it’s like a thunderstorm!” or I’ll play a very airy, light sound and compare that to the color yellow. After I played the piece “Syrinx” by Claude Debussy, one woman responded by saying “I heard yellow and it reminded me of a plain yellow dress I have. Sometimes after dinner, my husband and I put the kids to bed and we dance in the kitchen in my yellow dress. I love the way he holds me.” Another resident said, “When you started playing, I heard red because you played very strong.”

Then I asked the residents to tell me what feelings they had when I played the flute piece. The woman who told me the story about her yellow dress told me the same story again. I began to assume she was just repeating this story. However, she continued the story… and completed it by saying “And when I wear my yellow dress, I feel like I’m glowing.” It took a certain complexity of cognitive and emotional skills to put together those thoughts and feelings, and for this resident to re-tell her story. Another resident, who I thought was sleeping through the entire program, popped his head up and said “Anger and Love!” and then plopped his head back down. It was a reminder that the music was affecting him, and I should not assume he wasn’t engaged. Finally, another resident said that when he listened to the flute piece, he felt it sounded like two people were trying to connect but were having a hard time, but by the end of the piece they found each other. Keep in mind that these answers are all given by residents who have lived with dementia for years.

There may not currently be a cure for dementia, but these examples offer hope. Each example is something that people would not assume someone living with dementia could accomplish. In fact, I didn’t believe these type of responses were possible when designing the programs. I also always chose to challenge the residents to something that I thought would be beyond their abilities (such as keeping a beat in unison nine times). But they proved me wrong. The truth is, there is so much more potential for growth, no matter what our age or level of ability. Sometimes it takes us looking for this potential through a slightly different lens.

Clermont Park, Holly Creek and Someren Gaen are Masterpiece Living communities, which means that we are co-creating a culture of growth, lifelong learning, and successful aging that is centered on the residents who call this place their home. We want you to know that we care about your loved ones and that it truly is a great privilege to spend time with them each and every week. We will continue to design creative programming and challenge them to continue proving us wrong. Our wish is that these hopeful moments, when resilience and potential rise to the surface, will offer a shimmer of light that we all need on our successful aging journey.

If you’re interested in learning more about what we offer for those struggling with dementia, please fill out the form below or call 720.974.3555.

Dementia Care Inquiry
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