Unlike Alzheimer’s, which primarily affects memory, Parkinson’s Disease Dementia (PDD) is more commonly characterised by issues with attention, executive function, and visual-spatial awareness. Those with PDD may experience symptoms such as slowed thinking, forgetfulness, and confusion, making it challenging for both the individual and their caregivers to manage daily tasks and communication effectively.
According to the Alzheimer’s Association, “As brain changes caused by Parkinson’s gradually spread, the person may also experience changes in mental functions, including memory and the ability to pay attention, make sound judgments, and plan the steps needed to complete a task.”
This story, about a gentleman named “George” and his caregiver, “Sarah,” highlights the importance of taking the time to listen, ask the right questions, and show patience in understanding the deeper meaning behind behaviours.
George’s Experience: Living with Parkinson’s Disease Dementia
George had been living in a care home for several years. He had Parkinson’s disease, which affected his motor skills, causing him to be frail and requiring assistance for most daily activities. Though he was able to walk, it was often difficult for him to maintain his balance, so staff would help him steady himself during his walks around the care home.
During the afternoons, when staff were busy with other residents, George would be left in his tilted wheelchair to rest. Despite the assistance he needed, George was often seen trying to get out of his chair.
With great effort, he would throw one leg over the side, and his slippers would often fall off as he attempted to stand. When staff saw this, they would rush over to help, straightening him up and putting his slippers back on, all without pausing to ask why he was trying to get out of the chair in the first place.
Why George Kept Wanting to Get Up from His Wheelchair
As Sarah, the caregiver, watched this happen day after day, she began to wonder what was the reason behind George’s behaviour. It was clear that he was putting a lot of effort into getting out of his chair, which led her to believe that there must be a deeper reason for his actions.
She felt that maybe it was more than just physical discomfort or frustration – perhaps there was an emotional or cognitive need that was being overlooked.
Sarah decided that she would take a different approach.
Rather than simply assisting George out of his wheelchair as others had, she took the time to sit down and speak with him. After all, communication is key in understanding any behaviour, especially with someone living with Parkinson’s disease. With their slow, sometimes halting speech patterns, people with Parkinson’s often need extra time and patience when expressing themselves.
A Heartfelt Conversation
One afternoon, Sarah made her way over to George, who was once again attempting to get out of his chair. Sitting beside him, she spoke gently, making sure that he could see her and that she had his full attention. “How are you doing, George?” she asked. “I noticed that you’re trying to get out of your chair. Is there something you need to do?“
As expected, George’s response was slow, but he didn’t hesitate to share what was on his mind. With great effort, he told Sarah, “I need to go to work. I can’t be late. My boss will be angry.“
Sarah saw that he was authentically anxious, and she could see that this thought was causing him distress. The anxiety was real, but it was not about his present reality—it was about a past routine that had stayed with him in his mind.
The Power of Reassurance
Recognising the need to reassure him, Sarah quickly thought of a solution. “George,” she said softly, “it’s actually a holiday today. Your boss has given everyone the day off. You don’t need to worry about being late. It’s all taken care of.”
As soon as Sarah spoke these words, George’s anxiety visibly lifted. His shoulders relaxed, and a small smile crossed his face. “Oh, I forgot it was a holiday today,” as if the weight of his worry had been lifted. For the first time in weeks, Sarah saw him at ease, no longer anxious about “being late for work” and no longer attempting to get out of his wheelchair.
The Power of Patience and Connection
This experience taught Sarah a valuable lesson about caregiving.
The behaviour that initially seemed like a simple act of restlessness was actually rooted in anxiety and confusion, exacerbated by the progression of Parkinson’s disease.
By taking the time to listen, engage in a thoughtful conversation to understand the meaning behind his behaviour, and provide reassurance, Sarah was able to alleviate George’s distress and offer him a sense of calm.
In the fast-paced world of caregiving, it can be easy to overlook the deeper meanings behind behaviours, especially when staff and caregivers are juggling multiple responsibilities. However, the key to understanding and supporting people with Parkinson’s disease is patience, compassion, and a willingness to go beyond surface-level assumptions. Sometimes, the answers are not immediately obvious, but with empathy and thoughtful communication, caregivers can provide the support their loved ones truly need.
By giving people the time and space to express themselves, caregivers can uncover the reasons behind their behaviours and address their needs in a meaningful way. It’s these moments of connection and reassurance that help improve the quality of life for those living with Parkinson’s and other neurodegenerative conditions.
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DISCLAIMER:
This article is based on a true story; however, names, locations, and certain events have been altered to protect the privacy and confidentiality of the individuals involved. Any resemblance to actual persons, living or dead, or actual events is purely coincidental.
The contents of this blog are provided for information purposes only. They are not intended to replace clinical diagnosis or medical advice from a health professional.
