Supporting someone with macular disease?

A macular condition can bring practical, financial and emotional changes for those diagnosed, and for their family and friends. 

People with a macular condition can become reliant on others to complete some everyday tasks for them. Everyone is different, and so is the level of help they want or need. 

It’s important to respect individual abilities and support someone to carry on with everyday tasks, even if you feel they don’t do them as well as they used to. 

It can be very difficult for you, as someone providing support, to ‘let go’. But most people with macular disease say they want to stay as independent as possible. 

Living with macular disease is a journey for you and for the person with the condition. As time goes on and people experience vision changes or more sight loss, it can be upsetting. It may bring up the same feelings as when they were first diagnosed. 

Frequently asked questions

1. What is macular disease?

   Macular disease affects the central part of the retina, called the macula. This leads to problems with central vision, which is used for activities such as reading, driving, recognising faces and seeing detail.

2. How can I best support someone with macular disease?

   The most important thing is to ask them what help they would like. Everyone’s experience of sight loss is different. Some may need support with daily tasks such as shopping or paperwork, while others may only need occasional help. Respecting their independence is key.

3. Why can someone with macular disease sometimes see things clearly and other times not?

   This happens because parts of the macula may still be working. Sight loss can be patchy, so the person may see some things but not others.

4. What are visual hallucinations and should I be worried?

   Some people with macular disease experience Charles Bonnet syndrome (CBS), which are visual hallucinations caused by the brain adapting to sight loss. These are not a sign of mental illness. Some people find them interesting, but others may feel distressed. Talking openly about it can help. 

5. What practical help is available from local services?

   Local councils provide a social services assessment for anyone whose daily life is affected by sight loss. They may offer low vision aids, rehabilitation training, or adaptations in the home to support independence.

6. How does macular disease affect emotions?

   Being diagnosed can feel like a grieving process. People may go through feelings of denial, anger, sadness or frustration before reaching acceptance. Friends and family should try to be patient and supportive.

7. My friend can’t recognise me in the street – why does this happen?

   Macular disease affects central vision, which is essential for recognising faces. Your friend isn’t ignoring you, they simply may not see you. Approaching them directly and greeting them warmly can help avoid awkward moments.

8. Will my loved one have to give up driving?

   Most people with significant central vision loss will not meet the legal requirements for driving. This can feel like a big loss of independence, but there are still many ways to stay social and active. The Macular Society runs support groups that can help. 

9. What support is available for family and carers?

   Caring for someone with macular disease can be challenging. The Macular Society offers counselling, local and online support groups, and a free guide for carers. You don’t have to cope alone.

10. How can I look after my own wellbeing while supporting someone else?

    It’s important to ask for help when needed, take breaks and share responsibilities with others if possible. Talking to people in similar situations – through our support groups or helpline – can make a big difference.

The Macular Society is here for you at every stage