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As a caregiver for someone with age-related macular degeneration (AMD), your support is critical to helping your friend, spouse or family member cope with this long-term, progressive disease.

Here is a checklist you can use and adapt for medical appointments and daily tasks, and for working with their wider eye care team.

✓  Medical appointments[i]
While accompanying the person you are caring for to treatment appointments is important, during this exceptional time, the staff at the clinic may ask you to wait outside due to social distancing rules. However, you can be there to provide comfort and security before and after the appointment, and help keep an open line of communication with their eye care team to ensure the person you care for understands the treatment options available and instructions for monitoring their disease. Helping them remember to attend all treatment appointments is crucial for slowing the progression of wet AMD.

To do list: Create a calendar for appointments and keep updated. Each person reacts differently to treatment, and appointments may not be scheduled at regular intervals. If the person you’re caring for sees several doctors for other diseases or conditions they may be living with, make sure eye doctor appointments are included on any master calendars.

Keep a list of questions to ask eye care professionals during visits, and write down the answers they provide for easy reference after you leave the doctor’s office. If they are unable to write down the answers due to their wet AMD, sit down with them after the appointment and make notes together.

Remind them of the different ways they can reach out to various support groups to get further information, for example by visiting macularsociety.org or by calling them on 0300 3030 111 for support and information.

If they would like to be registered on the local social services register as someone who has sight problems, they can get in touch with their eye specialist for an assessment. Further information is available here.  

Create a regular process for helping the person you care for monitor the progression of their wet AMD between visits. For more information about monitoring wet AMD, click here.

✓  Transportation
For people with vision loss, help with transportation is high on the priority list. As a caregiver, you may be able to drive the person you care for or accompany them on public transport, or connect them with local organisations for support. You can also bring together a network of friends and family who may be able to help in other ways; for example by bringing groceries from the supermarket or prescriptions from the pharmacy, to help reduce the number of trips the person you care for needs to make.

To do list: Create a list of friends and family who are willing to help.

Ask your local GP surgery to recommend local organisations that offer support with mobility and transport.

Create a 'community taxi fund' that family and friends can contribute towards for days when it may be unpractical to take public transport.

✓  In the home[ii]
Home can become an obstacle course for people with impaired vision. However, there are small changes that can be made, which will have a positive impact on safety. Two simple suggestions:

  1. For better visibility, line the edges of stairs with brightly coloured tape
  2. Create a contrast for switches and sockets using coloured tape

To do list: help the person you are caring for declutter their house and make sure objects are returned to the correct places to minimise the risk of tripping.

Use self-adhesive stickers in different colours and shapes to mark a variety of objects so they are easier to recognise.

Click here to read our article on tips for keeping the home safe.

✓  Healthy living[iii]
A balanced diet and exercise are important for maintaining general health, including eye health. Scientists believe that diet may be a factor responsible in the development of AMD. There are certain nutrients, such as antioxidants and carotenoids that can be obtained through foods like leafy greens and orange and yellow fruits and vegetables. These can protect the body from damaging substances that can speed up the death of cells in the body, including in the macula, which is responsible for central vision.

Encourage healthy eating and regular exercise. Setting and participating in health-related goals, such as a daily step goal, can have a positive impact on day-to-day wellbeing.

To do list: Help the person you’re caring for do their food shopping on a regular basis, ensuring that they get a range of fruits and vegetables.

If you share a home, create healthy meals and snacks together.

Click here to read our article on healthy living with wet macular degeneration.

✓  Medical paperwork
Caregivers are often asked to help keep medical documents up to date, including completing medical forms and collecting prescriptions.

To do list: Create and upkeep file folders for medical records as well as hospital letters and appointments slips.

Assist in picking up prescriptions from the pharmacy.

✓  The back-up plan
Caregiving is demanding work. You will need to take breaks and prepare for emergencies.

To do list: Create a network of people and organisations who can assist you with caregiving, including family, friends, paid health aides and volunteers from social service organisations.

Click here for more considerations and suggestions for how to look after your own health.

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[i] Moorfields Eye Hospital. Appointments. Available at: https://www.moorfields.nhs.uk/appointments. Last accessed March 2021.

[ii] National Institute of Building Sciences Low Vision Design Program. Design Guidelines for the Visual Environment. https://cdn.ymaws.com/www.nibs.org/resource/resmgr/LVDC/LVDP_Guidelines_052815.pdf. 2015. Last accessed March 2021.

[iii] Macular Society. Nutrition. Available at: https://www.macularsociety.org/support/practical-guides/healthy-living/nutrition/. Last accessed March 2021.

Page-Specific Approval Code UK | March 2021 | 107585