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Helen Rochford-Brennan, Chair of the European Working Group of People with Dementia, shares her experiences of the COVID-19 pandemic

Tuesday 31 March 2020

We recently spoke to Helen Rochford-Brennan, Chair of the European Working Group of People with Dementia (EWGPWD), about her experiences of living through the COVID-19 pandemic.

"I am a patient advocate and before COVID-19 my life was extremely busy, going to meetings in Ireland and travelling abroad to participate in events.  I was probably away from home for 1 or 2 days every week, which gives you an idea of how busy I was! Now, however, my diary is blank: I still have teleconferences and emails about my work, but I’m not travelling at all.  This is a huge difference when you’re used to being out and about and engaging with people, which keeps your brain very active.

I have found some aspects of this situation really hard to deal with, and the anxiety and stress can be overwhelming at times.  My husband is part of the high-risk group and my son lives and works in London. I’m worried about keeping us safe, and about my son being at a distance. The news is also a huge source of anxiety: when you hear about food shortages, suffering and deaths due to COVID-19 your head goes in a million directions at once.  Another aspect we’re both finding hard to deal with is the lack of human connection. For example, we used to go out for lunch regularly, and that doesn’t happen now. We miss going out to socialise, even going to the supermarket and meeting people there! We Irish love celebrating and I really miss those fun times, when communities come together.

At the same time, there are positives to the situation, and there are things we can do as people with dementia to help us cope. When I focus on the here and now, rather than what could happen in the future, it is like an injection against anxiety. I go out for a drive every day, and seeing all the daffodils and crocuses in bloom, and the swans on the lake, reassures me that spring is on its way. I can go out into my garden, hear the birds singing and feel grateful for what I have.  Even though we can’t see each other face-to-face, I can speak to my family on the phone, and messaging them through WhatsApp keeps those valuable connections alive.  In the early days after my diagnosis, I was lucky to receive cognitive and behavioural therapy, and that knowledge has sustained me in terms of managing my dementia.  Something that has been extremely helpful is keeping a structured daily routine: I plan my walks, what I’m going to cook, I try to speak to somebody every day and I also try to write to someone each day. Together, all these measures help me cope with the isolation, anxiety and stress. 

However, even though we’re isolated we can still influence change. For example, when speaking to a former Alzheimer’s Society employee, who is now a county councillor, I explained how letters can be very meaningful to people with dementia. She then contacted An Post (the Irish postal service), who are now considering giving everyone a stamp to send a letter to a loved one.  So, we people with dementia can do our bit. We can be positive, and say this too will pass. We can find different ways to keep making those valuable human connections."