AMD and the patient's psychology
AMD has no psychological cause: it is a degenerative disease of the macula linked to ageing. However, its psychological impact is considerable and often underestimated, including by doctors. Understanding the patient's fears and responding to them is part of the treatment. Page written by Dr Mayer Srour based on his publication in Les Cahiers d'Ophtalmologie.
AMD and psychology: the essentials in 30 seconds
- Does AMD have psychological causes? No. Its risk factors are age, genetics, smoking and diet. Stress or an emotional shock do not cause AMD — but they can make living with the disease harder.
- An impact comparable to serious illnesses: moderate AMD reduces quality of life by 40% (as much as severe angina), a severe form by 63% (comparable to the after-effects of a major stroke).
- Two fears dominate: fear of blindness and fear of dependence. AMD never causes total blindness: the peripheral visual field is preserved and independence in daily life remains possible.
- What the doctor should avoid: talking to family members rather than the patient, minimising the disease, making light of the injections, talking only about treatment without explaining the disease.
AMD has no psychological cause
Many patients wonder whether a shock, a bereavement or a period of stress may have “triggered” their AMD. The answer is clear: no. Age-related macular degeneration is a disease of ageing of the macula, whose risk factors are age, heredity, smoking, high blood pressure and a diet low in antioxidants and omega-3.
What is true, however, is that AMD has a major psychological impact, and that how the disease is experienced depends greatly on psychological state, on those around the patient and on the relationship with the doctor. That is the subject of this page.
An impact on quality of life that is greatly underestimated
The studies by Brown et al. (2006) measured the loss of quality of life due to AMD and compared it with other diseases. The results are striking:
This loss is underestimated by the general public, by non-ophthalmologist doctors, and also by ophthalmologists themselves. The impact is nevertheless highly variable: some patients with severe forms cope better with the disease than others with mild forms. Temperament, optimism, family support and general health play a considerable role.
The patient's fears, spoken or not
These fears are sometimes left unspoken. It is up to the doctor to bring them out, with a few questions about daily life, and to respond to them. When distress is significant — dark thoughts, prostration, inability to hear positive arguments — turning to the GP (médecin traitant), a psychologist or a psychiatrist is essential.
Mistakes to avoid during the consultation
How to give good support: our principles at the practice
Gauge the patient's daily life in a few sentences and understand their needs, even unspoken. Let them talk about their fears so as to dispel them better. Explain the disease before the treatment, and explain every change in therapeutic strategy (injection rhythm, change of drug).
Stress what is preserved, offer low vision rehabilitation and optical aids early when central vision declines, involve family and friends without taking the patient's place. And always leave the door open to innovations: research on AMD, including atrophic AMD, is moving fast, and hope is part of care.
Care in Noisy-le-Grand
Dr Mayer Srour, a retina and macula specialist trained at the Centre Hospitalier Intercommunal de Créteil and author of this publication, sees patients from eastern Paris (93, 94, 77) at the Grand Paris Ophtalmologie practice (67 rue de Malnoue, Noisy-le-Grand, 93). The practice’s equipment allows a complete assessment on site: OCT Spectralis, OCT angiography, angiography, retinal photography, and intravitreal injections are performed at the practice.
AMD and patient psychology: your questions
Answers from Dr Mayer Srour, ophthalmologist specialising in the retina in Noisy-le-Grand.
Can stress trigger or worsen AMD?
Stress does not cause AMD and does not speed up the degeneration itself. It can, however, make the experience of the disease worse, along with anxiety about injections and the perception of visual difficulty. Not to be confused with CSCR, another macular disease, which is linked to stress and corticosteroids.
Will I go blind with AMD?
No. AMD affects central vision (reading, detail, faces) but always spares peripheral vision, which allows you to get around and stay independent. Even in advanced forms, you do not lose your sight completely.
How can I help a relative with AMD?
Speak to them directly, do not decide for them, go with them to appointments without answering for them, help them adapt lighting and contrast at home, and encourage them to carry on their activities with suitable aids (magnifiers, screens, audiobooks).
Is psychological support useful?
Yes, when distress is significant: persistent sadness, withdrawal, disturbed sleep, a feeling of uselessness. The GP (médecin traitant), a psychologist or a patient association can help. Talking about it with your ophthalmologist is already a first step.
Do the injections hurt?
The injection itself is performed under local anaesthesia and lasts a few seconds; some discomfort or a gritty feeling may follow for a few hours. If you feel pain at every injection or significant anxiety before sessions, say so: adjustments are possible.
What is low vision rehabilitation?
Care provided with an orthoptist and a specialist optician to learn to use the remaining peripheral vision (eccentric fixation), choose the right lighting and optical aids, and keep reading, writing and getting around for as long as possible.
Related reading
Do you or a loved one live with AMD?
Dr Srour takes the time to explain the disease and the treatment, and arranges follow-up and low vision rehabilitation if needed.
The Grand Paris Ophtalmologie practice in Noisy-le-Grand provides consultations, screening and surgery for patients from neighbouring towns: