Understanding emotional barriers to community dementia care services in Ireland: A caregiver perspective

Social Lives

Author: Linzi Ryan, Assistant Professor in Department of Design Innovation

Image of elderly individual lying in bed close up, face not in shot. Hand being held by what looks to be a carer's hand.
10.2307_community.12138140-1 Linzi Oct Post

Dementia is the greatest global challenge for health and social care in the 21st century with an estimated 47 million individuals diagnosed worldwide, with this number projected to rise to 131.5 million by 2050. The majority of people with dementia live in community settings, supported by family and friends (also known as informal caregivers) who provide care services.  As dementia is a progressive disease characterized by cognitive and functional decline, over time people with dementia become increasingly dependent on support services.  Research has shown that Community Based Services (CBS), which aim to coordinate the treatment and care of people with dementia, can potentially provide a better quality of life for the care receiver, enable them to remain at home for longer, and be more cost effective then residential care.   Despite these benefits of CBS, people with dementia and caregivers use fewer services in comparison to other people in need of care.  While societal, cultural, and logistical factors affecting caregiver use of CBS are frequently studied, research of internal emotional barriers, mental limitations created by one’s own self that prevents open communication of thoughts and feelings, and their effect on CBS use is limited. 

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Including Patients and the Public in Research

Stories/Lived Experience

Author: Jamie Howell; PhD researcher, Department of Psychology, Maynooth University

Animation, 6 people on a blue background 3 healthcare practitioners 2 elderly people 1 person in a wheelchair and a female.
BioMed Central-

In recent years, health researchers have begun to embrace the concept of patient and public involvement (PPI). Rather than conducting research on or for various populations, we have begun to move towards working with patients and the public by prioritizing their needs and concerns. This allows researchers to learn from those who have lived experience and can help them design research projects which are more beneficial to the population being researched.

I first heard of PPI during my MSc, when my supervisor, Dr Rebecca Maguire encouraged me to include aspects of PPI in my research. Dr Maguire has worked as both a researcher and as a patient advocate, and her expertise has been invaluable to my own research.

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