Other sections of this site touch on some of the issues faced by people experiencing vision loss as well as their carers, families and friends (see our Caregiver’s section). However, we feel that it is important to devote a separate section to the psycho-social impact of vision loss.
One of the most difficult aspects of vision loss is the mental and emotional turmoil people go through when they find out that they will lose their sight. This is particularly true in the case of dry AMD where currently no medical treatment options exist.
In the case of wet AMD the change from healthy vision to severe visual impairment can be very rapid leaving the visually impaired person very little time to adjust.
As a result periods of severe depression are common, often worsened by the sleep deprivation that tends to accompany vision loss. Another aspect are hallucination that are caused by what is called the Charles Bonnet syndrome which can cause considerable anxiety if patients have not been warned that this is a common side-effect of AMD.
We feel that these issues are frequently neglected and hit visually impaired people and their friends and families unprepared.
Denial is a normal reaction, particularly at the time the initial diagnosis is made. Recent studies of people with chronic illnesses have concluded that denial can be a positive coping strategy as long as it doesn’t interfere with proper treatment and self-care.
It is not unusual for AMD patients to be angry – angry at their loss of vision and having to give up favourite activities, angry at family and friends and the need for greater dependence on others, angry at their doctors for the inability to restore their sight. Not being able to accomplish usual tasks is frustrating. Knowledge of available options for treatment and rehabilitation, devices to adapt vision and environmental changes to maintain independence help AMD patients cope with their disease and their emotions.
Fear is a very common reaction to AMD. The diagnosis implies a potentially deteriorating condition, long-term adjustments, and decreased independence. It is reasonable to fear disability and the unknowns of an illness. For many people, the greatest fear is losing control over their lives. Loss of self-respect may be intense. These are not easy issues to work through.
It is essential for people with AMD to mourn their losses. Mourning can actually help people adjust. Grieving needs to be accepted with patience and compassion by both the individual with AMD and friends and family. The pain of grieving usually eases with time and is gradually replaces by sadness band by positive accommodations to the loss. This adjustment is ongoing and does not follow any calendar or set of stages.
If you’ve recently been diagnosed with AMD, you may need help building a community of people with whom you can share your concerns, questions, and feelings. In addition to seeking treatment and rehabilitation, emotional support is crucial.
Some people worry that asking for emotional support is a sign of weakness, as if they are somehow expected to “be strong” and handle the situation on their own. However, solitude and strength are not the same thing; you don’t have to be alone to be strong. Asking for support is one way you can take control of your situation.
Talking with family and friends can bring comfort and reassurance. In addition, many AMD patients find the mutual support of others with AMD to be a source of comfort, providing a connection in an experience that can feel isolating. Some would say that other AMD patients provide the best experts – others that have been through the AMD experience. Shared experiences and information is glue that bonds people quickly. It can provide comfort, companionship, and a safe place to go with fear, guilt, pain and depression. Not only is a “peer” network supportive, but it can also be fun and powerful. Laughing about the “weird” experiences one has as an AMD patient is best done with others who have walked in your shoes.
One thing to remember, any information you receive about treatments, low vision devices or rehabilitation should be discussed with your eye care professional to determine if it applies to your particular situation.
You are not alone – although your experience of vision loss will be unique to you, others have had similar feelings and experiences
The importance of family and friends in helping the AMD patient learn to cope with their disability cannot be underestimated. At the same time, a diagnosis of AMD may affect family members as well, shifting roles and responsibilities. Spouses or children, unprepared for the role of caregiver, may find themselves thrust into that position, suddenly feeling more like a parent than a partner or child. At the same time, it is important to avoid being too overprotective, allowing the AMD patient to maintain as much independence as possible.
Provided below are some suggestions to help everyone deal with vision loss and the changing relationships and increased dependence caused by AMD:
You might also find it helpful to know that you are not alone – although your experience of vision loss will be unique to you, others have had similar feelings and experiences. We strongly recommend that patients living with AMD consider low vision rehabilitation services, which are typically available through an agency in your area. Through low vision rehabilitation services, you will be able to learn tips and techniques for living well with vision loss. Services offered by low vision rehabilitation agencies vary from country to country, and even from area to area, but typically, a low vision rehabilitation agency will at least provide counseling and support (or referrals) and will teach you how to adapt activities of daily living.
If you do not know who provides low vision services in your area, you can begin to search for them in several ways: asking your family doctor, asking your retinal specialist, searching on the internet for “low vision rehabilitation services” together with the name of your city or area (ie search term: low vision rehabilitation services Bangor Maine), asking at your local seniors community or service centre, or by contacting us at firstname.lastname@example.org. Remember, you are your own best advocate, and you have a right to ask for what you need!
You may also be interested in reading about the experience of other people and families living with AMD. Please visit our new section on personal experiences of vision loss to read about other experiences with vision loss because of AMD. You are not alone!
Vision loss is not only associated with functional problems but also with affective disorders including lower morale, depression, social isolation, reduced feelings of self-esteem, diminished emotional security and low levels of social interaction. (Branch et al. 1989).
The clinical literature on the issue of depression and visual impairment indicates that depression is a common emotional reaction to vision loss. However, these studies are based on relatively small sample sizes. Based on the study of the empirical literature Horowitz (Horowitz et al., 2000) asserts that it is wrong to see depression as an essential part of the grieving process before adjustments could be made to cope with vision loss. The majority of adults with vision loss and adults who experience other chronic illnesses do not suffer from depression and it is important to recognize that depression is a serious disease that can be treated. However, a significant sub-group of older adults who are visually impaired are affected by depression which can have significant impact on functional ability, rehabilitation experiences and general quality of life.
Vision impairment is associated with higher than normal risk of depression. This was shown in the studies by Branch et al. (1989), Campbell et al. (1999), Carabalese et al. (1993), Wahl, Oswald et al. (1999) as well as Wahl,Schilling et al. (1999). The Carabalese study found that persons with vision impairments had a 2.3 times greater risk of depression than those without a vision problem.
Another study (Bazargan et al., 1995) investigated the effect of eleven common chronic conditions on depressive symptomatology among a sample of African Americans. It showed that vision impairment was one of only three conditions (in addition to kidney and circulation problems) that independently predicted depression when demographical factors, social support, and all other health conditions were held constant.
All studies seem to confirm the increased risk of depressive symptomatology whether vision impairment is assessed medically or through self-reporting.
Verbrugge (Verbrugge et al. 1995) identified vision impairment as one of only three independent predictors for depression based on an analysis of the relationship between depression and functional disability on the one hand and vision impairment and functional disability on the other. He points out that the primary link between chronic illness and depression is the association of chronic illness with functional disability. Since a growing body of evidence shows the link between vision impairment and functional disability Verbrugge states that it is not surprising to see the strong links between vision impairment and depression.
The prevalence of depression in adults with vision impairment
About 5% of adults in the general population suffer from depressive disorders.
The figures are 3% of the general population of elderly in the community, 5% of those in primary care settings and 15-20% of those in nursing homes. These are the figures for severe depression. Below that level there are an estimated 5%-20% of older Americans who suffer from serious and persistent symptoms of depression. The figures for visually impaired people are much higher with at least one third of participants in most studies classed as depressed. Figures vary as to the severity of depression. However, it is significant to note that most people who were classed as depressed at baseline remained so in follow-up studies.
The likelihood of developing depression does not seem to depend on the severity of the visual impairment, the age of the person, number of eye conditions, age of onset, time since onset or whether the onset of the vision impairment was sudden or gradual. The link between functional ability and depression mentioned above seems to be much more significant.
RNIB research into the situation of older visually impaired people (Baker et al., 1998) shows that functional limitations caused by visual impairment, and in particular mobility problems, lead to isolation with 40% of survey respondents feeling lonely and 48% feeling “left out of society” (p. 34). Isolation may therefore be a contributing factor to the increased tendency for depression.
Finally, Horowitz et al. (2000) points to an interesting link between attitudes towards blindness and the ability of people to cope with vision loss. A number of surveys have found that vision loss is one of the disabilities most feared by the general population. An individual’s own fears relating to visual impairment can have a negative impact on his or her ability to cope when sight loss occurs thus increasing the tendency to experience depression.
Baker, M., Winyard, S. (1998): ?Lost Vision – Older visually impaired people in the UK". Royal National Institute of the Blind, Campaign Report No. 6.
Bazargan, M. and Hamm-Baugh, V.P. (1995): The relationship between chronic illness and depression in a community of urban black elderly persons" Journals of Gerontology Series B: Psychological Sciences and Social Sciences, Vol 50, Issue 2 S119-S127
Branch, L.G., Horowitz, A., and Carr, C. (1989): "The implications for everyday life of incident self-reported visual decline among people over age 65 living in the community. Gerontologist, 29 359-365.
Campbell, V.A., Crews, J.E., Moriarty, D.G., Zack, M.M., Blackman, D.K. (1999): “Surveillance for sensory impairment, activity limitation, and health-related quality of life among older adults – United States, 1993-1997”. MMWR 48(SS-8) 131-157.
Caraballese, C., Appollonio, I., Rozzini, R., Bianchetti, A., Frisoni, G.B. Frattola, L., and Trabucchi, M. (1993): "Sensory impairment and quality of life in a community elderly population. Journal of the American Geriatrics Society, 41(4), 401-407.
Hamlin, D., Lightstone, A., and Wood, J. (2002): “Associated psychological and emotional aspects of sight loss”. Optometry February 2002(43-45). [On-line] Available: www.optometry.co.uk
Horowitz, A. (1995): Aging, vision loss and depression: A review of the research. Aging & Vision News, (7) 1, 6,7.
Horowitz, A., and Reinhardt, J.P. (2000): "Mental health issues in visual impairment: Research in depression, disability, and rehabilitation. Silverstone, B., Lang, M.,
Rosenthal, B., and Faye, E. (eds). The Lighthouse handbook on vision impairment and vision rehabilitation: Vol. II Vision rehabilitation (1089-1109)
Mangione, C.M., Guitierrez, P.R., Lowe, G., Orav, E.J., and Seddon, J.M. (1999): "Influence of age-related maculopathy on visual functioning and health-related quality of life. American Journal of Ophthalmology, 128 (1), 45-53.
Verbrugge, L.M., Patrick, D.L. (1995): “Seven Chronic Conditions: Their Impact on US Adults’ Activity Levels and Use of Medical Services”. American Journal of Public Health 1995 (85) 173-182.
Wahl, H-W., Oswald, F., Zimprich, D. (1999): ?Everyday competence in visually impaired older adults: a case for person-environment perspectives". The Gerontologist 39(2). 140-149.
Wahl, H-W., Schilling, O., Oswald, F., and Heyl, V. (1999): “Psychosocial consequences of Age-Related Visual Impairment: Comparison with Mobility-Impaired Older Adults and Long-Term Outcome”. Journal of Gerontology: Psychosocial Sciences 1999(54B No. 5) 304-316.
AMD Alliance International is not a medical organisation, therefore we can only provide general information that is not intended to be a substitute for a proper medical assessment. Please read our eye health information disclaimer.