More than a tremor – how Parkinson’s disease affects women’s mental health

Understanding the psychological impacts of Parkinson’s is the aim of a new study that is looking to speak to women in Ireland with the disease, writes Michael McHale

When people think of Parkinson’s disease, the motor symptoms – tremor, stiffness, slow movement – are often the first to come to mind. But what are less acknowledged are the psychological impacts of the disease – perhaps, in part, because they are more likely to be present in women, who are a minority among people with Parkinson’s.

While men are more likely to be diagnosed with the condition, studies have highlighted higher incidence among women in the 50-54 age category.

“There’s very interesting evidence that shows that there’s a higher prevalence of the non-motor symptoms in women experiencing Parkinson’s than men,” said Dr Fiadhnait O’Keeffe, chartered clinical neuropsychologist and senior lecturer in UCC. “We’re already looking at things like there’s higher rates of anxiety, depression, social isolation, social withdrawal and stigma in women with Parkinson’s.”

Despite these differences, there are few studies that explore in-depth the lived experiences of women with the disease. Dr O’Keeffe and colleagues in UCC’s Parkinson’s Disease Research Cluster (PDRC) hope to help change that with a new project.

While men are more likely to be diagnosed with the condition, studies have highlighted higher incidence among women in the 50-54 age category

The team is currently recruiting women with Parkinson’s for a study focused on their psychological well-being. Participants will be asked to complete an eligibility survey before being chosen for a one-to-one interview.

During the interview women will be given the opportunity to discuss the emotional experience of living with Parkinson’s, covering the trajectory of the diagnosis and investigating areas such as healthcare access, coping with symptoms, and the disease’s impact from a gender perspective.

Lecturer in the UCC Centre for Gerontology and Rehabilitation Dr Emma O’Shea, and psychologist in clinical training, Eibhlín Toomey, are involved with the study being led by Dr O’Keeffe.

In order to ensure that findings relate as closely as possible to Parkinson’s disease, women with other neurological or severe physical or mental health conditions will be excluded from the study.
According to Dr O’Keeffe, societal gender differences can shape women’s experience with Parkinson’s, particularly in how they cope with symptoms and navigate healthcare systems.

“For example, women have a quite significantly increased likelihood of nursing home admission due to their Parkinson’s compared to men, and an earlier admission to nursing homes,” she told IMT.

“There are a few different angles to this. Some of it is that there’s other evidence to show that women lack spousal or caregiver support. Often, they don’t have a caregiver at home and they’re living alone. This compares to only about two per cent of men in one study who were in a similar living situation.

“There’s a wider area that’s looking at the hormonal impact and biological differences in why women with Parkinson’s might experience different aspects of the symptoms differently.

“But in this study my doctorate student Eibhlín Toomey is focusing specifically on psychological well-being and really looking at that lived experience of women with Parkinson’s.”

It is hope that, by documenting these lived experiences, a deeper understanding of what it is like to navigate a Parkinson’s diagnosis as a women can be attained.

“We anticipate that the findings will help inform recommendations around sensitive healthcare models,” said Dr O’Keeffe. “That includes prioritising mental health support for people with Parkinson’s in general.”

Given the evidence of higher rates of depression and anxiety among women with the condition, she would also like to see greater emphasis on non-motor symptoms, particularly in terms of screening and early intervention strategies.

“The idea is to have a more inclusive and responsive healthcare pathways that not just address the gender disparities that we see in Parkinson’s but highlight the key mental health and quality-of-life aspects that we know from broader Parkinson’s research.

While this study will look at the experiences of women across all ages, it is hoped that future research will how Parkinson’s affects women at different ages, particular when it is diagnosed at young onset.

“We are anticipating, based on the current evidence, that there will be a difference in the psychological and emotional well-being that women with Parkinson’s are experiencing. The next question that we’re going to be answering, hopefully, in further research is how or why that might vary across the lifespan according to age.”

The non-motor symptoms of Parkinson’s will also form part of the work of PD Life, the first all-island research hub for Parkinson’s disease in Ireland.

With the disease affecting more than 19,000 people across the island – and with case numbers expected to double by 2050 – PD Life will bring together almost 50 collaborators to work on ways to enhance the well-being and quality of life for people living with Parkinson’s.

The research hub is led by Prof Suzanne Timmons, head of the centre for gerontology and rehabilitation in UCC’s School of Medicine. It will build on existing research skills and knowledge across three linked projects, shaped by priorities for people with Parkinson’s:

Stigma – looking at how facial expression and speech problems affect others’ opinions.
Mental Health – looking at unmet needs, how people cope, and how it affects healthy-living choices.
Physical Activity – helping people with PD to start and continue exercise and dance, and examining how this affects health.

Last year PD Life received €4 million in funding through the North-South Research Programme run by the Higher Education Authority.

The PD research hub will bring together researchers from six third-level institutions and research institutes (UCC, Tyndall National Institute, Trinity College Dublin, University of Limerick, Queen’s University Belfast and the University of Ulster), healthcare partners, and PD support organisations such as Parkinson’s Ireland and the Parkinson’s UK Northern Ireland branch.

Information on Dr O’Keeffe’s study, and how to take part is available on the website of Parkinson’s Ireland (parkinsons.ie).

In April the charity will celebrate Parkinson’s Awareness Month, an opportunity to inform the public of the progressive neurological disorder that affects more than 10 million people worldwide.

To mark the month, Parkinson’s Ireland will host a series of walks in 20 locations around the country on Saturday, April 11.

‘A Walk in the Park for Parkinson’s’ aims to raise vital funds for the charity’s services, which include a freephone Parkinson’s nurse helpline, online advice webinars and local in-person exercise classes and support groups. To view where the walks will take place and register to take part, see  www.walkinthepark.ie.