Understanding dementia in people with Parkinson’s

June 1, 2022

Parkinson is a progressive neurological condition which causes problems in the brain and gets worse over time. Parkinson’s UK estimates that there are around 145,000 people were living with a Parkinson’s diagnosis in 2020.

Although many people are familiar with the physical symptoms of the disease such as the tremors and imbalance, they are often less aware that in later stages, dementia is prevalent. Recent studies following people with Parkinson’s estimate that 50 to 80% of those with the disease may experience dementia.

There are two main types of dementia that affect some people with Parkinson’s – they are called Parkinson’s dementia and dementia with Lewy bodies. According to Parkinson’s UK, there are motor and cognitive symptoms involved in both conditions. However, the order in which movement and dementia symptoms appear is different.

Parkinson’s dementia fluctuating symptoms

Jackie Pool, Dementia Care Champion with Quality Compliance Systems (QCS) – the leading provider of Policies, procedures and best practice guidance for the social care sector – says that the experience of Parkinson’s dementia varies from person to person, and in dementia with Lewy bodies, symptoms often fluctuate.

“Parkinson’s disease causes changes to the brain in a region that controls movement. Early symptoms include tremors and shakiness, muscle stiffness, a shuffling step, stooped posture, difficulty initiating movement and lack of facial expression. As Parkinson’s continues, these brain changes often begin to affect mental functions including memory and the ability to pay attention, make sound judgments and plan the steps needed to complete a task.”

Focus on abilities

“Whatever the symptoms a person with Parkinson’s is experiencing, carers are still able to use the QCS PAL instrument to provide practical support and deliver a sense of emotional well-being,” says Jackie.

“That’s because it assesses an individual’s overall level of cognitive and functional ability, not the cause. And it is important when it comes to all types of cognitive impairment to focus on what individuals can do as well as what their challenges are. That way the person is not disabled by others but is enabled to be as independent as possible despite their difficulties.”

In addition to the PAL Instrument, the other tools in the QCS Dementia Centre help caregivers think about the way they provide support. A range of Purposeful Practice Guides support the care giver to be adaptable to the individual’s unique experience of living with Parkinson’s – and to consider not just cognitive issues, but physical, social and emotional aspects too.

Symptoms of Parkinson’s dementia

She stresses that there are, however, some symptoms that are more common in individuals with Parkinson’s dementia that carers should be aware of.

“When it comes to cognitive issues, individuals often experience a difficulty with making sense of what they see, known as visual perception. So they might not be able to recognise an object against a busy or similar coloured background and have difficulty in the reading of shadows, light and sense of depth” she says.

“For example, picking up a glass of water can be difficult if the glass of water is under a bright light, and surrounded by shadow. It’s hard for the individual to perceive exactly where the glass is on the table.

“Add to that, the muscle control difficulties that come with Parkinson’s and, in this case, how that would impact on their ability to easily reach out, grip and raise the glass. It is easy to understand how the individual may end up being dehydrated.”

This also affects some individuals when walking across thresholds, she says. “For example, darker colours on the floor can be perceived as being lower than lighter colours. So you might see an individual trying to step up and down between different coloured floor surfaces.

“In one care setting I worked in, an individual had problems navigating her way from the door in the bathroom to the toilet. We realised that the black and white floor tiles caused visual confusion. To solve the issue, we installed a single-colour bathroom runner across the floor, which created a clear path and enabled her to find her way without any problem.”

Slowness in movement and processing

Another common symptom, she said, is slowness, not just in movement but in thinking and processing too. “When we say something to a person, we need to allow extra time for them to process what we’ve said and then to produce a response. Otherwise, you often get a conversation that is completely out of sync, where the person is responding to the last but one thing you said.

“It’s also important for carers to slow down their movements as well. Don’t be in too much of a rush as the individual won’t be able to take it all in.”

Fluctuating ability and confusion

Another symptom to look out for, said Jackie, is that people diagnosed with dementia with Lewy bodies often fluctuate in ability, and are at some times more able than at others. “Family members might say things like” ‘she will do it when she wants to’. It’s important to understand that it is the illness and reframe the thinking in terms of ‘can and can’t’ rather than ‘will and won’t’ and being positive when the person does achieve something they have struggled with.”

Other symptoms include hallucinations and misperceptions where the individual is confused about what they see. “I worked with an individual with Parkinson’s dementia who couldn’t settle at night as she said there was someone in her room,” Jackie says.

“I went to her room and lay on her bed so that I could view the world from her perspective. I noticed that the bedside lamps were very close and very bright. In the corner of the room was a coat stand her daughter had brought for her, with a hat on top.

“We realised that with the light in her eyes, it looked like a figure lurking in the corner. So we took out the hat stand, adjusted the lighting and the problem was solved.”

Adapting care to individual needs

The QCS Dementia Centre Purposeful Practice Guides prompt care givers to adapt their support to the individual abilities and needs.

This means being receptive to the emotional experience of the individual, to the specifics of their dementia as well as to their physical symptoms, and the way it’s affecting them. Also, being aware of the context and the situation that the person is facing.