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Helen Rochford-Brennan, Chairperson of the EWGPWD, asks “What matters to me … Who am I?”

Wednesday 22 January 2020

Helen Rochford-Brennan, Chairperson of the EWGPWD, asks “What matters to me … Who am I?”

“What matters to me?” is a question that people living with dementia are often asked to consider when speaking at conferences or taking part in research. But such consideration is not as common in a healthcare setting.

I have been a patient a number of times in the last few years and my experience has not always been positive. On one occasion there was no consideration taken of my dementia diagnosis and I was moved within a hospital five times. A new environment and new staff contributed to my confusion.

Every healthcare professional should know and must know who I am. Who am I when I present to the hospital with dementia and/or delirium? Who am I when I attend my GP, who am I when I meet the community nurse and require services at home? Who am I if an ambulance is called to my home?

The Irish Health Information and Quality Authority (HIQA) have recently undertaken work on a human rights based approach to care and the foundation of this is “knowing” the person. The Irish health service are finally looking at how to implement “What matters to me” which is a great step forward.

People living with dementia and their families must be empowered to give clear information on what matters to the person and health care systems must hear our voices. But systems are made up of people; so while we need robust systems and policies we also need the human beings to uphold our human rights.

I saw with interest and joy the #HelloMyNameIs campaign, which encourages healthcare professionals to introduce themselves. This is very important and I support the campaign. However, in any conversation just one introduction is not enough and if the doctor introduces him or herself, then the person with dementia must also be given the time to introduce themselves in return.

In modern Ireland today, the health service is in crisis: insufficient staff, home-care chronically underfunded and too many older people on trolleys in hospital emergency departments. It is a stressful environment for both the patients and the medical professionals. However, if healthcare teams just ask the simple question of “what matters to me”, they can already improve my experience and mitigate the terrible environment.

From a human rights based approach, I call on all healthcare staff across Europe to find out who they are really treating. Do you know the person’s medical needs, emotional needs, spiritual needs and social needs? Do you know and understand what brings them comfort and joy? Do you involve people living with dementia in care decisions and look out for non-verbal signals if they cannot speak? To others like me living with dementia, I want to remind you that you matter and you are important. Speak up and be heard.