An estimated one-third of older adults with vision loss report clinically significant depressive symptoms.1 Hardly surprising when you consider that in a recent Galaxy survey 47 per cent of Australians ranked loss of sight as the number one health concern, ahead of loss of memory (37 per cent), loss of hearing (4 per cent) and loss of limb (7 per cent).2 So, as eye health professionals, what can you do to help protect your patients?
Everyone with vision loss is at risk of anxiety and depression3 – it may begin at the initial diagnosis of an eye disease, or it may appear many years later when vision problems worsen. People may not recognise anxiety or depression. Even if they do recognise something is seriously wrong, often they do not seek help for a variety of reasons.
Depression and anxiety can make the process of adjusting to vision loss more difficult. It can impact so many aspects of a person’s life, interfering with treatment compliance as well as accessing and benefiting from rehabilitation designed to improve independence and quality of life.
Ophthalmologist Simon Chen says depression is commonly encountered in clinical practice among patients attending eye clinics. “Studies have shown that vision loss is among the most common chronic conditions associated with depression, particularly in older people,” said Dr. Chen. “As a retinal specialist I see this occurring most commonly among patients with diabetic retinopathy and age-related macular degeneration, but any chronic eye condition can be expected to increase the risk of depression.”
Studies have shown that vision loss is among the most common chronic conditions associated with depression, particularly in older people…
Sydney glaucoma specialist Dr. Ivan Goldberg believes depression is more common than is appreciated. “Depression in glaucoma patients is made worse by glaucomatous visual disability and in turn contributes to a reduction in quality of life. This downward spiral feeds on itself, as a depressed person is less likely to adhere to or to persist with their management program, including regular drops and keeping appointments, therefore increasing the risks of progressive visual damage,” he said.
A study conducted by Dr. Goldberg and Dr. Simon Skalicky found that depression was more prevalent with increasing glaucoma severity, reaching statistical significance in patients aged 70–79. Factors such as progressive peripheral field loss, impaired visual function, multiple medical treatments, and surgery may contribute to depression,” they wrote.4
Short-term symptoms of depression can be a normal response to a diagnosis of serious sight threatening condition or actual loss of sight, but persistent depression is not, says Dr. Chen.
“Loss of vision can make routine activities of daily living (e.g. reading, writing, watching TV, walking up and down stairs, many hobbies, driving) difficult. People that have visual worlds, such as artists, and academics that read a lot may be particularly prone to depression when
they lose their vision,” he said.
A recent Galaxy poll commissioned by Macular Disease Foundation Australia identified that people were most concerned about losing the ability to drive, read and work as a consequence of vision loss. Australians aged 65 years and older said the areas of their life most affected by loss of vision would be driving (44 per cent) followed closely by reading (40 per cent). Baby boomers (50–64 years) said loss of vision would most impact their driving (38 per cent), followed by working and reading (both 27 per cent). Generation X (ages 35–49 years), are more likely than others to say that loss of vision would most impact their work (45 per cent), followed by driving (31 per cent). Generation Y (16–34 years) said loss of vision would most impact their work (42 per cent), far more than driving (28 per cent) and reading (17 per cent).
Dr. Chen said other factors that can contribute to an increased risk of depression in patients with poor vision include a change in self-image, social isolation, loss of independence, embarrassment, fear of falls, and co-existing illnesses.
“Even patients without significant visual loss can become depressed in part due to the anxiety and fear of losing vision and becoming blind. They may fear losing their driving licence, losing their job and their independence,” said Dr. Chen.
However, he said depression appears to be more common and more severe in patients with more advanced loss of vision and patients with disease affecting both eyes rather than only one.
Early Intervention Improves Outcomes
In Dr. Goldberg and Dr. Skalicky’s report, they noted “Earlier recognition of depression by clinicians might facilitate treatment in its own right, and would allow clinicians to understand and to communicate more effectively with their glaucoma patients. Improved communication is likely to improve compliance with glaucoma management and to improve outcomes of care.”
Dr. Goldberg said it was important that “ophthalmologists remained aware of this and felt comfortable raising the possibility of the emotional challenges facing an individual patient (such as, but not only, depression); if identified (and a strong therapeutic alliance between ophthalmologist and patient forged over time helps with this), remedial action could be recommended and initiated
with the help of the GP.
“If able to get to know a patient over time, an ophthalmologist often can sense an altered mood. Open questions about general health since the last visit can elicit even subtle changes that point to something significant going awry in the patient’s world. Active intervention can make a real difference,” he said.
Relationship Building Important
Dr. Chen said while eye care clinicians are well trained in diagnosing and managing eye disease, the skill set needed to effectively and compassionately communicate with depressed patients is not necessarily one that is taught well during clinical training.
“I try to establish a positive rapport with patients, especially those with chronic conditions that attend for regular visits. It’s important for them to feel comfortable and able to talk about their fears with you. The things I’m looking for are any indication that the patient is becoming more socially isolated, withdrawing from their usual leisure activities, or frequent negative statements about their life in general. Other indicators of depression might include poor concentration, a change in weight, and loss of appetite, difficulty sleeping, and lethargy.
“One patient with age related macular degeneration for instance, who had always taken particular care in her appearance, became increasingly socially isolated. She avoided leaving the house for social engagements because she could not see well enough to apply her make-up easily and felt embarrassed about her appearance.
“Another patient with age related macular degeneration stopped attending for her regular anti-VEGF injections and ultimately became legally blind because she became depressed. In large part this related to her feelings of extreme guilt – she felt that she was being a burden on her daughter who had to take time off work to bring her to the clinic,” said Dr. Chen.
“If I have concerns I will usually ask the patient directly about their mood. If I detect evidence of depression I
will ask the patient to report their concerns with their GP and also ask the patient for permission for me to contact their GP regarding the issue. Depression is one of the commonest conditions that GPs see and they are generally better placed to assess and manage patients than eye care professionals.”
In the case of depression, it’s likely that a GP will refer the patient on to a psychologist for counselling, and this, says Julie Heraghty, CEO of Macular Disease Foundation Australia and a qualified psychologist, can be a challenge in its own right.
“In my counselling with patients I have found there to be some key areas for a patient related to anxiety and depression with macular disease,” said Ms. Heraghty. “Firstly, the referral pathway needs to be clear and effective. Referral and communication between the ophthalmologist and GP is important where medication may be needed and/or referral to a counsellor using the Medicare mental health care initiative. You are dealing with people who can be very anxious on diagnosis especially in terms of their ongoing treatment and the burden of the disease on their own health, their partner and family. They worry about cost of treatment, transport and what the future may hold in terms of aged care, quality of life and independence. This can lead to anxiety and depression and a reluctance, especially in the elderly, to seek help.
“Secondly, the relationship and communication between the ophthalmologist or optometrist and the patient is critical. It must be open and caring as patients place a great deal of trust in their health professional and their advice. Patience is a must as people often need to ask the same question several times over several visits,” said Ms. Heraghty.
“Thirdly, for those losing vision there can be, for some, stages of grief – such as denial, anger, bargaining and depression. Not everyone experiences this process or goes through every stage. However, when this grief process does occur, there needs to be an acknowledgment of what is being experienced and skilled guidance to support the transition to reaching a level of acceptance of the situation. “Helping the client meet the challenges, maintain a positive attitude and explore and use new skills to support independence and quality of life, are the key objectives of counselling.”
Ms. Heraghty said counsellors need to understand macular disease, treatment, aspects of low vision and the importance of associated rehabilitation. “The Foundation is working with psychologists to improve this understanding. Patients will often say ‘no one understands, the doctor is too busy, I cannot burden my family and the GP does not know I have vision loss as I have not told them’,” she said.
There is still a great deal of work to be undertaken to ensure a seamless referral pathway for anxiety and depression related to macular disease to ensure early diagnosis, referral to skilled professionals and adequate and appropriate support.
Dr. Liam Lim, who practises on the North Coast of New South Wales, says patients are often overwhelmed by the information they’re provided upon diagnosis. “One reason patients drop out of treatment is that they don’t understand… when the diagnosis is delivered (patients) don’t always take all the information in… I always acknowledge that they will have questions and I encourage them to keep asking questions every time they visit.”
Additionally, he said he has educational handouts that detail the treatment needed, how much it costs, and how often the patient will need to visit his clinic. He said that if he hasn’t done an adequate job of explaining something, optometrists are able to fill in the gaps and provide reassurance.
Julie Heraghty said this approach is essential to help alleviate anxiety. “People often forget or misunderstand the details provided in a consultation. Then they think they can’t ask their health care professional questions because he or she is too busy. Many elderly people with macular degeneration have lost their life long partner, live alone or live with an elderly partner who also has health issues. They worry about how they will get to appointments, how they will cope with treatment, how they will pay for treatment. They fear the loneliness and isolation that can come with loss of independence.
“We encourage people to take a friend or family member with them to the ophthalmologist and optometrist so they can ask questions and discuss the consultation later, reminding each other
of what has been said,” she said.
Dr. Chen said organisations like Ms. Heraghty’s also provide valuable support by helping patients understand and manage their ocular condition with excellent publications and support through their Helpline. “Aside from referring patients to their GP, when appropriate I will try to help the patient access low vision services and other community supports such as the Macular Disease Foundation Australia, Vision Australia and Guide Dogs as they have a wealth of diverse expertise available to help patients access appropriate services.”
A Holistic Approach to Care
Patients with vision loss often have to contend with other chronic diseases that impact their quality of life. Macular Disease Foundation Australia refers to this as ‘The Ripple Effect of Vision Loss’.
“Our Ripple Effect of Vision Loss Research showed that 85 per cent of the macular degeneration patients surveyed also suffered from other health conditions including arthritis (47 per cent), heart disease (25 per cent), diabetes (12 per cent), cancer (10 per cent), depression (9 per cent), obesity (5 per cent) and Alzheimer’s or dementia (1 per cent),” said Ms. Heraghty.
It is increasingly recognised that carers are at increased risk of depression, perhaps partly related to the impact on their relationship with the patient and the burden of caring for them. “Our research makes it clear that carers of people with macular degeneration also experience significant challenges with their own health and high rates of depression, however many do not seek any help or support. Overall depression rates amongst those caring for people with vision loss from wet age related macular degeneration were triple those seen in the Australian population over
65 years,” said Ms. Heraghty.
“I frequently encounter people who contact the Foundation who are elderly, their husband or wife is elderly, they both have serious chronic diseases, one person has vision loss and they are struggling to cope with the here and now while fearful of the future. They are often just managing with finances, both pensioners and retired superannuants, and often unsure of how they will handle aged care.
“Confusion and uncertainty becomes the norm and this leads to ongoing anxiety. I approach the problem with clients by breaking the issues down into bite-sized pieces, dealing with low hanging fruit first and identifying what we can do quickly and easily to make the situation better. What can we plan in a longer time frame to ease the burden and stress and who do we need on our team to support the client in the process of recovery. This not just about eyes, it is about the whole person… it’s about taking a holistic approach.”
She said it was important to encourage anyone who is concerned about coping, anxiety or possible depression, to discuss their feelings with their GP as a matter of urgency.
References
1. www.lighthouse.org/services-and-assistance/social-services/depression-vision-loss-and-vision-rehabilitation
2. Galaxy Telephone Omnibus survey conducted from 27–29 March 2015. A total of 1,100 people aged 16
years and older living in Australia were interviewed. Data was weighted by age, gender and region to reflect the
latest ABS population estimates.
3. The Global Economic Cost of Visual Impairment Access Economics and AMDAI 2010
4. Skalicky S, Goldberg I: Depression and Quality of Life in Patients With Glaucoma: A Cross-sectional Analysis Using the Geriatric Depression Scale, Assessment of Function Related to Vision, and the Glaucoma Quality of Life-Journal of Glaucoma 2008; 17:546–551
Seven Steps to Manage Symptomatic Patientswriter: Dr. Simon Chen |
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1. Be mindful that the language and specific wording you use when counseling patients can potentially have a profound effect on the way they view their condition. Whenever possible, highlight the positive aspects of a patient’s situation. For example, telling a patient: “you have early signs of early age-related macular degeneration but it is not affecting your vision and there are numerous things you can proactively do to minimise the risk of the condition progressing such as improving your diet, quitting smoking and having regular eye checks” will create a much more positive impression than telling that same patient “you have age-related macular degeneration which is a blinding condition and the commonest cause of blindness in Australia”. 2. Provide patients with as much balanced information and practical advice about their condition, as they are willing to receive. Otherwise their imagination can run riot and they may automatically assume the worst, sometimes based on irrational fears, things they hear from friends and relatives or from inappropriate sources on the Internet. Examples of information that can help allay some fears include advice that:
3. Many patients will have undiagnosed depression, sometimes severe, so make a conscious effort to look for clues that a patient may be depressed, otherwise it’s easy to miss them in a busy day of consulting. Patients with chronic eye disease often develop a good rapport with their optometrist or ophthalmologist. They come to trust them and may be more open to sharing their feelings and concerns. Eye care professionals may be among the few people that patients interact with on a consistent basis. Some of the pointers that a patient is depressed may include increasing social withdrawal, change in weight. 4. Emphasise the aspects of a patient’s condition and management that they can control e.g. compliance with glaucoma drops, following dietary recommendations for age related macular degeneration etc. This helps give patients a sense of control over their disease and feel less helpless. 5. Encourage patients to stay socially and physically active as this helps to alleviate depression. 6. Remember that depressed patients may be less likely to be compliant with treatment e.g. a patient with glaucoma may forget to use glaucoma drops or diabetic patients may fail to monitor their blood sugar levels optimally and place themselves at an even greater risk of visual loss 7. Depression is a treatable condition, so refer patients to their GP or a mental health professional for assessment if the condition is suspected. |
A Personal Perspective |
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At 78, Salvation Army Minister Donald Austin said it has taken some time to come to terms with his significant vision loss, which has rendered his right eye “practically useless” and his left eye significantly impaired. Mr. Austin, who was operated on for cataracts some years ago, has since developed macular degeneration and glaucoma. He said his ophthalmologist, who has become “a good friend”, and his close relationship with God has helped him to avoid “despair, depression or any sense of discouragement” that might otherwise have accompanied his severe vision loss. “Losing my sight might have started off with macular degeneration, but when I really knew the worst was probably about five years ago, that was when it was revealed to me that I had advanced glaucoma,” said Mr. Austin. “It was Dr. Lim who revealed to me that I would eventually go blind because the glaucoma is especially advanced. That news did knock me because first and foremost I am a committed Christian involved in my church and I play the organ. I immediately thought of how I need my eyesight so much to do that… That I would lose something so precious to me, it came as a shock.” Mr. Austin said being able to talk issues through with Dr. Lim was very helpful because he has always taken the time. “Dr. Lim more or less had to tell me there is nothing that can be done – he’s been upfront with me and I appreciate that. I’m currently taking three lots of eye drops and… they are slowing the deterioration… but he’s made it very clear that there is nothing else we can do – except to keep control of the pressures in my eyes.” “One of the things I found very hard to cope with was the day I had to surrender my driver’s licence. I felt that my independence was being taken from me, but again it was pointed out to me that my field of vision is so restricted, that if I tried to keep on driving it would be dangerous, not just for me, but for others.” Mr. Austin said the changed vision in both eyes had also affected his balance so that he is now unable to go out on his own. “I can easily misjudge a step or an uneven piece of ground and fall – I have had a few falls. Recently I fell on my driveway, which is very steep, I went down hard. Fortunately my head went down on a small grassy patch rather than on to the concrete. That’s made me reluctant to go out on my own. “After that big fall I did give in. I’ve been to Vision Australia and I’ve got one of those white walking sticks and a low vision badge, I don’t use them all the time but I’m certainly going to be taking them with me when we leave for holidays tomorrow. Otherwise, I have a wonderful wife and when we go out, she takes me by the arm and leads my like a poor lost soul. “I know something like this could make folks react very differently, it could make them think of suicide, but I’m not that way. I don’t know what the future holds but as far as I’m concerned there’s definitely no despair or fear of depression or discouragement… quite often through big trials like this, people can experience wonderful things happening and do wonderful things for others… and this is what it’s all about.” And as for the organ, Mr. Austin has come to realise that he doesn’t really need to read music to play. “Most of my playing is by ear, so I know that even if I do go blind I will be able to play… I feel God has been preparing me along the way and I’m careful to give the praise and acknowledgement to Him – without my faith I probably would have collapsed.” |
