Dr Dana Pourzinal is a Research Fellow at the University of Queensland. She is a chief investigator on the Australian PDCogniCare Program, led by Professor Nadeeka Dissanayaka, which focuses on improving the diagnosis and management of people living with cognitive disorders in Parkinson’s disease.
Most people equate Parkinson’s disease with movement problems, like tremors, slowness, and loss of balance. While Parkinson’s disease is defined by its motor symptoms, most people living with the condition will also experience difficulties with attention, planning, memory or decision-making. Cognitive decline is common in Parkinson’s disease, and many people eventually develop mild cognitive impairment or dementia. The impact of cognitive impairment on daily activities can be profound, often comparable to that caused by motor symptoms.
It is no wonder that the risk of cognitive decline can feel daunting for many people living with Parkinson's disease. This is not only due to the fear of losing identity and independence, but also due to the often fragmented and inconsistent support available for people living with dementia in Parkinson's disease. For example, many people report uncertainty about when to seek help, difficulty accessing appropriate cognitive assessment, and limited guidance on what cognitive changes mean or how symptoms can be managed.
Recently, our PDCogniCare team published new best practice guidelines in Age & Ageing aimed at improving the diagnosis, evaluation and management of cognitive disorders in Parkinson’s disease. Our goal was to tackle a problem that many clinicians face in practice: how do you spot dementia early to provide effective care in Parkinson's disease?
Cognitive symptoms in Parkinson’s disease do not present in a uniform way. Some patients develop subtle attention or executive difficulties years before dementia emerges, while others experience rapid decline. Many also have overlapping neuropsychiatric symptoms such as hallucinations, mood disturbance or sleep disorders. These can complicate the clinical picture and make it difficult to determine what is driving the cognitive changes.
For this reason, cognitive impairment in Parkinson’s disease is a multidisciplinary problem involving neurology, geriatrics, psychiatry and allied health, including neuropsychology. As a result, clinicians often rely on a patchwork of recommendations from multiple guidelines.
Our guidelines were developed to provide a clear, structured pathway for clinicians to assess and manage the cognitive features of Parkinson’s disease. To adequately capture stakeholder perspectives, the guidelines were developed from systematic literature reviews, a modified Delphi process, and a lived experience expert enquiry. This produced comprehensive guidance addressing multidisciplinary needs and priorities, with several major implications.
First, we emphasise the importance of early recognition. Cognitive symptoms are not simply a late complication of Parkinson’s disease. They can emerge at any stage, and present in many different ways. Early intervention is essential to enable timely access to treatment, support, care, and planning, and thus increase quality of life.
Second, the guidelines outline a structured evaluation process. This includes making use of formal neuropsychological assessment to monitor changes over time. We also highlight that cognitive disorders in Parkinson’s disease rarely occur in isolation. Motor symptoms, psychiatric features, sleep disturbances and autonomic dysfunction often interact. A comprehensive evaluation therefore needs to look beyond cognition alone.
Third, the guidelines provide practical recommendations for management and care. This not only comprises pharmacological and non-pharmacological strategies but also emphasises the importance of adequate care including advance care planning and multidisciplinary care.
One of the key messages from our work is that cognitive disorders in Parkinson’s disease should be approached proactively rather than reactively.
Too often, cognitive symptoms are only addressed once they have become severe. People living with Parkinson’s disease may therefore experience long delays between the onset of cognitive symptoms and a clear diagnosis. Early identification can allow clinicians to provide timely education, care, and support services, improving quality of life and helping patients and families prepare for the future.
These principles extend beyond the context of specialist Parkinson’s disease clinics to primary, community, and aged care settings, For instance, primary care physicians play an important role in the early recognition of cognitive change as well as the ongoing management of cognitive disorders.
Our hope is that these guidelines will be a valuable resource to help clinicians feel more confident in recognising and managing cognitive disorders in Parkinson’s disease. In doing so, the PDCogniCare project aims to improve service delivery with profound impacts on quality of care and quality of life for people living with Parkinson's disease and their loved ones.
You can read the full article in Age & Ageing here: Best practice guidelines for the diagnosis, evaluation, and management of cognitive disorders in Parkinson’s disease
