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As a long-term and degenerative eye disease, wet AMD can lead to vision loss[i], which can have a devastating impact on the lives of those diagnosed and the people around them. This can be especially difficult during this exceptional time, when access to services may be affected and people might need to self-isolate.

Caregivers play an important role in supporting people with vision loss, not only through help with daily activities, but through emotional support as well. There is no one way to do this – often, just being there is enough. Below, we have outlined tools and techniques to help facilitate positive and supportive conversations with the person you care for as they adjust to a new reality with vision loss.

At diagnosis

See the situation from their point of view
The key to supporting someone with vision loss is to try to understand what they are going through. Information and resources are available, but it’s ok not to know everything – remember that you are on this journey together.

"Have honest and open conversations to learn what worries the person you care for might have."

Have honest and open conversations to learn what worries the person you care for might have. Some may want to discuss the impact of vision loss on their daily life, while others find talking about concerns relating to the progression of the disease helpful, from fear of sight deteriorating rapidly to not being able to enjoy life to the full extent. For some, focusing on future aspirations can feel energising – are there any new hobbies they would like to try out or places they would like to visit?

Listen
Sometimes simply listening can be the best way to help. Give your loved one time to express how they are feeling about their diagnosis and be there for them when they want to talk. The diagnosis can take time to ‘sink in,’ so be gentle in your approach.

Enable three-way communication
If possible, attend early in-person appointments with the eye specialist to provide emotional support for the person you care for, and also to help you better understand what their diagnosis means. Make sure to come to the appointment prepared. Think of questions you would like to ask beforehand and bring a notebook with you for writing down the answers.

Living with AMD

Use positive language
As the person you care for experiences changes in vision, they may feel insecure or uncomfortable carrying out everyday activities, and go through a range of negative emotions from depression and anxiety to fear and denial. Help them adjust to life with vision loss by focusing on the positives. What hobbies and activities do they still enjoy doing? If they have always loved reading, maybe they can now learn to enjoy audio books and podcasts instead?

Continue three-way communication
Aim to join ongoing appointments with eye specialists and other healthcare professionals, if possible, to understand how the disease progresses and keep up-to-date with any changes in your friend or family member’s condition.

Learn from other carers
Joining a local or online support group for caregivers may also be helpful and provide an opportunity for you to hear other people’s experiences and gain tangible tips on how you can further strengthen your communication patterns and habits.

"Caregivers play a crucial role in the lives of those affected by AMD."

Caregivers play a crucial role in the lives of those affected by AMD, but remember that patient organisations and healthcare professionals can provide vital support and advice throughout the journey – for both you and the person you care for. Supporting someone with a long-term, degenerative condition like AMD can be hard on the caregiver as well, so don’t be afraid to seek help from your healthcare specialist and patient organisations and speak to others in a similar situation. Read more about how you can care for yourself while you care for someone else here.

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[i] RNIB. Understanding age-related macular degeneration. Available at: https://shop.rnib.org.uk/understanding-age-related-macular-degeneration-89739?PR10006. Last accessed January 2021.

Page-Specific Approval Code UK | February 2021 | 107588