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Inside Their Mind: Understanding the Evolving Needs of Your Loved One with Dementia

When a loved one is diagnosed with dementia, the person closest to them often takes on greater responsibilities. They step into a new role as a caregiver. As the disease progresses, those with dementia lose the ability to perform activities of daily living. They also may engage in behaviors that put themselves or others at risk. As a result, their spouses, children and friends can feel overwhelmed by the physical and emotional needs of their loved one with dementia. At CareOne, our priority is to relieve caregivers of the more challenging aspects of their role. We want caregivers to bring their best selves in their relationship with their loved ones.

People affected by memory loss conditions can find hope and purpose even through the progression of the condition and new challenges in their relationship. One of our star caregivers, Donna, shared her experience working with our staff to deliver personalized care to her husband at CareOne Harmony Village.

Donna’s Story

Donna spent most of her life as an educator, pursuing several degrees while working to enrich the lives of others. She began searching for a life partner on eHarmony. One day, when she had called the platform to cancel her membership, she received a call from her future husband Karl (pseudonym), asking to meet. Donna was instantly captivated by his athleticism and love for music. Soon after, she and Karl had chosen their wedding song and were married at the ages of 61 and 70, respectively.

The CareOne/Caregiver Relationship

CareOne Dementia Care Specialist, Emily Baratta, has worked with Donna and Karl over the past year. She counsels Donna on how to be a supportive and patient partner as Karl loses cognitive functioning and ability to complete activities of daily living. Using Teepa Snow‘s positive care approach, Emily develops care plans based on Karl’s personal background and specific needs. While Karl has significant memory loss and is unable to hold conversations, he and Donna are equipped with the resources that allow him to live a meaningful and purposeful life.

Here’s how Emily works with Donna to understand Karl’s needs through the progression of his dementia:

Processing Personality Changes

Due to dramatic changes occurring in the brain of a person with dementia, many parts of their personality can change while other existing traits may intensify.

Sometimes, these changes are rapid. Karl always had a rigid, stubborn side, liking things done exactly the way he wanted. Donna noticed his cognitive decline as he became increasingly irritable. She also observed aggressive episodes that were out of character for him. This shift was exacerbated by the pressures of lockdown restrictions during the pandemic. At the time, Donna felt very confused with little answers as to what these changes would mean for Karl moving forward.

After consulting medical professionals, Donna was connected with CareOne to provide 24/7 management of Karl’s aggressive and challenging behaviors. As these behaviors can be the most concerning symptoms of dementia, it’s important that caregivers feel safe knowing that their loved one is being watched with a close eye. The team also works to help caregivers understand the triggers of these behaviors and provide strategies to mitigate them.

Navigating a New Relationship Dynamic

Another stark change for caregivers is the shift in the relationship dynamic. The caregiver and their loved one go from equals taking care of one another to resembling more of a parent-child relationship. As the disease progresses, people with dementia often lose the ability to complete tasks like eating, dressing, medication and hygiene management. Many may experience greater mobility issues and general confusion that prohibits them from taking care of themselves.

Even with significant memory loss, Karl recognizes that Donna is his partner. He desires her care and undivided attention. Karl has needs that he could once execute or communicate on his own but no longer can. This shift adds a level of complexity for caregivers like Donna as they can feel overwhelmed by the ongoing physical and emotional responsibilities of caring for someone with memory impairments.

Together, Donna and Emily consistently touch base to share information about Karl’s current and past behavioral patterns. Consistent dialogue between Harmony Village’s dementia care specialists and caregivers is important to better understand the more complex emotional needs of dementia residents and how CareOne staff can best meet them in their living environment. Emily teaches caregivers like Donna to practice patience and clear communication during their visits.

Teaching New (and Old) Ways of Communicating

Even as dementia progresses, many aspects of a person’s psyche and personality remain the same. Karl always loved music and used to sing in bands in his younger days. From the beginning of Donna and Karl’s relationship, music was central to how they connected with one another.

Despite Karl’s limited communication skills, singing still comes naturally for him. While he can’t spin Donna and dance like he used to, he is able to communicate his needs through music. As a central part of Karl’s care, Emily and the Harmony Village team use music to guide him. This includes supporting his daily routine and facilitating musical activities during Donna’s visits.

It’s also not uncommon that multilingual people will revert to their native language as their disease progresses. Karl was born in Germany and lived there through most of his young adult life. To look for new ways to connect with Karl, Donna began taking German classes four years ago. This development has significantly enhanced their relationship and helps Donna prepare for the possibility of Karl forgetting English. Karl lights up when Donna speaks to him in German during their visits; it has brought them closer together.

Employing various best-in-practice behavioral approaches, CareOne identifies ways to help caregivers reconnect with their loved ones. Currently, Donna and Emily are organizing a vow renewal onsite for Donna and Karl with German incorporated into their ceremony.

Memory care specialists foster environments that are conducive to the evolving needs of those with memory care needs, while helping caregivers reconnect with their loved ones and bringing them closer together.

Find a CareOne Harmony Village facility near you for more information about our memory care services.

About Harmony Village

Harmony Village is CareOne’s assisted living community expertly designed for residents with memory impairments. The team provides specialized care to help individuals living with memory impairments maintain the highest possible quality of life. The caregiver plays a key role in Harmony Village’s work as dementia specialists and staff partner with them to gain knowledge of their loved one’s background and personality which informs their approach to care.