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Open letter published in HRB Open Research reflects on Helen Rochford-Brennan’s experiences of the COVID-19 pandemic

Thursday 11 June 2020

An open letter has been published on the online research platform of the Health Research Board (HRB), entitled “Giving voice to those directly affected by the COVID-19 pandemic – the experience and reflections of a person with dementia”. This letter takes the form of a reflective conversation with Helen Rochford-Brennan, Chairperson of the European Working Group of People with Dementia (EWGPWD). Honouring the principles of public and patient involvement (PPI), it is an attempt to give voice to the experience of one of the many thousands of at-risk people during the COVID-19 pandemic. The letter was informed by a series of conversations between Helen Rochford Brennan and Fiona Keogh from the Centre for Economic and Social Research on Dementia at NUI Galway.

Helen reports heightened anxiety, stress and isolation. As well as having dementia, Helen is the carer for her husband and is finding this responsibility particularly stressful just now. She also emphasises the many positives in her life –not living alone, being able to get outside in her garden, and having a supportive network of family and neighbours. It is also helpful that she is adept at using computers and social media and has access to good broadband. These resources help her to stay active and to keep the isolation and anxiety at a more manageable level. She suggests two practical supports, which she feels would really help people with dementia at this time. Firstly, human contact which is essential for reassurance and emotional support; and secondly, a simple information sheet specifically for people with dementia and their carers, sharing useful strategies and information.

The open letter identifies that years of neglect of community-based supports for people with dementia are more obvious now than ever. While formal health services are important, it states, people with dementia have long recognised the importance of a social model of support and the development of dementia friendly communities has played an important role in building community responses. It also stresses that there are some lessons to be learned from the current crisis, not least the need to have significant investment in home care services and supports, a need which is evident in Helen and her husband’s case. They receive no more than half an hour of home support between them, per week, despite both having medical conditions which, particularly during this crisis, mean they are considered “extremely medically vulnerable”. Keeping people out of nursing homes and building a person-centric continuum of care, allowing people to live at home, in their communities, should be the legacy of this virus, Helen concludes. You can read the open letter, here: https://hrbopenresearch.org/articles/3-29

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