BRACE ambassador Beth Britton writes about the isolated experiences of many people living with dementia

When I read BRACE CEO Mark Poarch’s recent blog, ‘Dementia and Coronavirus’, I was particularly struck by Mark’s words regarding the impact of this pandemic on people who are living with dementia:

Depending on the nature and stage of their dementia, (people with dementia) may find the new restrictions bewildering and unsettling.”

Mark is entirely right, and as someone whose father lived with dementia for 19 years (spending the last nine of those in care homes) I struggle to imagine how we would have managed as a family in the current circumstances. We were so used to seeing dad whenever we wanted or needed to, and only occasional outbreaks of norovirus at his care home temporarily suspended those visits.

Coping with isolation

Through contact with my social care clients, and hearing from family, friends and colleagues about how loved ones with dementia are coping, highlights a mix of responses. Some people with dementia show very little understanding about what is happening, which relatives sometimes feel may be a blessing given how awful this coronavirus pandemic is. For others, they are extremely distressed about not getting the visits or having the personal contact that they did only a few short weeks ago, and this is leading to feelings of anxiousness, sadness or even greater confusion.

It is incredibly difficult to explain what is currently happening to a person with dementia since I think so many of us without dementia are struggling to make sense of it ourselves. There is no benchmark for coping with this, and many people without dementia are finding isolation is testing them mentally, physically or emotionally far more than they might have envisaged, straining relationships and giving people a real sense of loss of a life that they once enjoyed.

The experiences of people with dementia

These feelings, however, do in many ways bring us closer to understanding the post-diagnostic experience that many people with dementia go through, as I’ve read numerous individuals who are living with dementia pointing out on social media channels or through blogs. Isolation from family and friends (who perhaps don’t understand dementia) becomes commonplace for many people after diagnosis, leading to increased feelings of loneliness. In turn, a life more confined to home is often a by-product of feeling cut off from either the people or activities that the person used to engage with.

This, of course, is just a snapshot and isn’t everyone’s experience, but it is perhaps worth reflecting for anyone currently struggling with the isolation we’ve all been asked to commit to that for people with dementia this is often normal post-diagnosis life. When the UK lockdown is eventually relaxed, many of us will look forward to going back to some of our usual activities, but if this experience teaches us anything it is that investing in dementia research is more important now than ever to ensure that a diagnosis isn’t one that comes with an automatic isolation that is for the rest of the person’s life.

About the author:  Beth Britton is an award-winning content creator, consultant, trainer, mentor, campaigner and speaker who is an expert in ageing, health and social care