Supporting loved ones with macular disease

Receiving a diagnosis of age-related macular degeneration (AMD) can be challenging for both the individual affected and their loved ones.

Family members and friends play a vital role in helping patients navigate the journey ahead. At OcuPlan, we understand the importance of providing compassionate assistance and valuable information to those affected by AMD.

The first thing to know is that macular disease is common. The RNIB estimate that around 4 million people are living with signs of the condition, with an estimated 700,000 people experiencing sight loss from it. It typically affects people as they get older and causes loss of central vision. Many people who are living with dry AMD won’t experience sight loss, but between 10 and 15 per cent will progress from dry AMD to wet AMD which is much more sight threatening.

It is essential that people living with AMD and their loved ones know what to look out for and the signs of dry AMD progressing to wet as early intervention is paramount in preserving vision. While AMD doesn’t cause complete blindness, the loss of central vision can affect a person’s ability to carry out everyday activities such as reading, driving or seeing faces.

Damage from dry AMD can’t be reversed, but, if diagnosed earlier, there are things that can be done to help slow down the progression and reduce the risk of sight loss.

In this guide, we share practical tips and insights on how to support your loved ones throughout their macular disease journey, empowering them to lead fulfilling lives despite the challenges they may face.

If your loved one is complaining of sight loss or if they have just received a diagnosis for AMD, speak to them to gain an understanding of the level of sight loss they are experiencing. Ask them this question:

What can you see and not see?

Understanding the person’s sight loss can help when determining how much help they may need. Making simple changes to help everyday tasks such as home lighting, room layouts or buying low vision equipment may help them. Remember, any change has to suit the person with the condition, not what you feel is right.

To provide the best possible support, it is important to educate yourself about AMD.

Gain a solid understanding of the condition, the symptoms, available treatments, and potential impact on your loved one's daily life. By becoming well-informed, you can offer accurate information and dispel any misconceptions that may arise.

There is a wealth of information available through reputable sources, such as medical professionals, support groups and organisations such as the Macular Society.

OcuPlan also offers a free AMD sight support service. It was created to help people living with AMD to inform them on the condition and provide guidance and reassurance. When signing up you’ll receive a comprehensive guide on AMD, explaining what the condition is, causes, treatments, what signs to look out for and how to help preserve vision. You’ll also receive regular helpful guides and tips on living with AMD.

You can learn more here.

Maintaining open and honest communication is essential when supporting someone with macular disease.

Encourage your loved one to express their feelings, concerns, and frustrations. Listen attentively and validate their emotions, offering empathy and understanding. Be patient, as they may experience a range of emotions throughout their journey. Assure them that you are there to support them unconditionally.

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

The level of assistance required can vary depending on the degree of vision loss, including:

If your loved one requires practical assistance, we’d recommend the following things:

While it is important to offer assistance, it is equally crucial to encourage your loved one's independence. Collaborate on finding adaptive technologies or tools that can enhance their quality of life.

Encourage them to participate in hobbies and activities they enjoy, adapting them as necessary to accommodate their visual needs. By promoting independence, you empower your loved one to maintain a sense of control over their life, despite the challenges they face.

Supporting someone with macular disease can be emotionally challenging for you as well.

Connect with support groups or online communities to share experiences and gain insights from others in similar situations. There are some active Facebook groups and forums where people pose questions, share stories and ask for advice. The Macular Society run local support groups for people living with AMD and their family members. Consider counselling or therapy to address any emotional difficulties that may arise.

Remember to prioritise your own well-being and seek support when needed. Taking care of your own needs enables you to provide the best support possible for your loved one.

Supporting your loved ones with macular disease requires patience, understanding, and a commitment to their well-being. The new OcuPlan free service also aims to help people with macular disease access the professional guidance and reassurance they need through our ‘rapid advice line’ and ‘ask a consultant’ services. OcuPlan is here to provide expert help and support, patients and their loved ones can take steps to slow their condition’s progression, retain their independence and enjoy everyday life.

To learn more about the Free Service, visit ocuplan.co.uk/free service or call us on 0207 173 5200.