Living with Parkinson’s in Care Homes: Uncovering the Hidden Symptoms and Ways to Support Residents

Before embarking on my undergraduate nursing studies, I worked for several years in a nursing home within my local community. I have always had a vested interest in neurological conditions following my first band 5 post within acute stroke and medicine. I am now into my second year as a PhD researcher at Queen’s University Belfast.

This blog post highlights the often-overlooked impact of neuropsychiatric symptoms on individuals living with Parkinson’s Disease (PD) in care home settings. It is based on a recent mixed-method systematic literature review carried out as part of my research.

The Hidden Challenges of Parkinson’s Disease

Parkinson’s disease is more than just tremors and slow movement. As the condition progresses, many individuals experience a range of neuropsychiatric symptoms that can significantly affect their quality of life. These symptoms may include:

• Depression
• Anxiety
• Hallucinations
• Low mood

While we often focus on the physical aspects of PD, these “invisible” symptoms can be just as challenging, if not more so, for people living with PD and their caregivers.

The Care Home Conundrum

As PD advances, many individuals transition to care homes for round-the-clock support. However, this move brings its own set of challenges:

1. Adapting to a new environment: The change in routine and unfamiliar surroundings can be particularly difficult for people with PD.
2. Increased dependency: As the disease progresses, residents become more reliant on caregivers, adding complexity to their care needs.
3. Social isolation: Neuropsychiatric symptoms can lead to withdrawal from social interactions, intensifying feelings of loneliness.

The Impact of Neuropsychiatric Symptoms

Research has shown that neuropsychiatric symptoms in PD can have a significant impact on both people living with PD and their caregivers:

• Quality of life: Depression and anxiety can often affect a person’s well-being more than severe motor symptoms.
• Daily functioning: These symptoms can interfere with everyday activities and social interactions.
• Caregiver burden: Managing neuropsychiatric symptoms can be particularly challenging for caregivers, leading to increased stress and burnout.

The Challenge of Underdiagnosis

One of the biggest hurdles in addressing neuropsychiatric symptoms in PD is that they often go unrecognized. It’s estimated that about 50% of cases of depression and anxiety in PD are not detected. This underdiagnosis can be due to:

• Lack of awareness among patients and caregivers
• Stigma associated with mental health conditions
• Limited access to specialised mental health services
• Overlap with other PD symptoms, making them difficult to identify

Moving Towards Better Care

To improve the lives of individuals with PD in care homes, we need a holistic approach that addresses both physical and psychological needs. This includes:

1. Integrated care plans: Combining strategies for motor symptoms with targeted interventions for neuropsychiatric symptoms.
2. Staff training: Enhancing the ability of care home staff to recognise and manage neuropsychiatric symptoms in PD.
3. Multidisciplinary approaches: Involving various healthcare professionals to provide comprehensive care.
4. Support for caregivers: Recognising the challenges faced by both formal and informal caregivers and providing necessary support.

As we continue to see an increase in the prevalence of Parkinson’s disease, it’s crucial that we adapt our care strategies to meet the complex needs of this population. By addressing the often-overlooked neuropsychiatric symptoms, we can significantly improve the quality of life for individuals with PD living in care homes.

Arnelle Gillis is a PhD researcher at Queen’s University Belfast