Partners of people with Parkinson’s-related dementia: A postal questionnaire study
Care provision in Parkinson’s-related dementias is physically demanding and mentally exhausting contributing to higher burden and stress in the partner.
Parkinson’s disease dementia and dementia with Lewy bodies can be physically and mentally disabling for both members of the couple. Care partners play a substantial role in supporting with various activities of daily living and often become responsible for the management of their partners’ condition. Consequently, care partners may feel overburdened, frustrated and stressed and may lack time, support and energy to cope with the situation. An ongoing postal questionnaire study explores experiences and feelings of care partners of Parkinson’s-related dementia, which will help us to tailor psychosocial interventions better.
We caught up with Sabina Vatter, PhD Student and Research Assistant, currently working on this study.
What are the main aims of the study?
The aim of this study is to explore personal experiences and feelings of partners who are providing care and support to their loved ones with Parkinson’s and related cognitive impairment. This is important because we know little about those people caring for a partner with a more complex type of dementia such as Parkinson’s disease dementia or dementia with Lewy bodies. This research will provide a better understanding of spousal experiences and will be helpful in tailoring future psychosocial interventions to meet the needs of this population.
What does it involve for a participant?
Participants will be asked to complete a one-off, paper-based questionnaire which should take 15 – 20 minutes to complete. The survey includes questions about participants’ own health and well-being, resilience, associated feelings of care provision as well as questions regarding relationship satisfaction. The questionnaire will be posted to participants’ home together with an invitation letter, consent form and pre-paid envelope so that the questionnaire could be returned to the researchers.
What do you hope the outcomes of the study will be?
This study will help to better understand partners’ experiences and feelings related to providing care to their partner. By understanding what people experience on a daily basis, we can focus on finding the best way to tailor therapies so that they would meet individual needs.
Where is the study based?
The questionnaire study is run by the University of Manchester but is seeking participants throughout the UK.
Who can take part?
The study is looking for partners who are currently caring for someone with a diagnosis of Parkinson’s disease and mild cognitive impairment, Parkinson’s disease dementia or dementia with Lewy bodies.
You can see if you are eligible for this study or others around the nation by logging into your Join Dementia Research account.
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