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Call for stories

You might have seen us share our work on the feelings of loss and grief carers of people with dementia can experience throughout and after their caring journey. We are now working on a follow up project that looks at how these feelings and experiences have been affected by COVID19 and the lockdown measures. We know feelings of loss and grief can be triggered by many different things, including the moment of diagnosis, seeing a deterioration in the person’s condition or a move to a care home. Since the outbreak of COVID19 everyone has had to adjust to a new way of living and caring for someone with dementia. We’ve already heard from carers that they experienced increased feelings of loss and grief because of the current measures in place. For example, because of the lockdown people’s visits, services and routines were stopped which meant the person’s dementia could have gotten worse, leading to a bigger sense of loss for the carer. Carers have also said that they lost parts of their own identity and routine. Some people lost their work, they lost contact with the ‘outside world’ when they were shielding with the person they are caring for, or they lost the regular contact and visits to the person in a care home. All of these examples can lead to feeling grief. While we have heard some experiences from carers, we want to explore this further so we can help raise awareness of the effects of COVID19 on carers of people with dementia and make carers feel less alone in this strange and isolating time. We therefore ask you to share your written accounts of loss and grief in your caring role with us. We want to combine these in a publication that we can share on our website, our social media channels and with other organisations and policy makers. You can write what you feel comfortable with. Your contribution will be anonymised before it’s shared. We know it can sometimes be difficult to talk or write about your experience. Especially in the current situation, where everyone experiences a heightened level of stress and anxiety and there’s still a great deal of uncertainty. Please only share your story if you feel comfortable with it. tide staff is available to speak to you over the phone or on a video call. We can also signpost you to relevant organisations and resources that can help and support you in this time. If you want to share your story but are unsure of what to write, please have a look at this section on our website for inspiration. Send your contribution to us on You can also contact us on that email address if you’re looking for a bit more information.

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