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Focus Must Shift to MD Carers and Family

When developing management plans for people with low vision, eye care professionals must take into account the patient’s partner, family and carers, says Associate Professor Alex Hunyor, Retinal Specialist at Sydney Eye Hospital and Macquarie University.

His comments are in response to research into the impact low vision has on carers, their families, the community and the healthcare system.

The research, commissioned by the Macular Disease Foundation Australia reveals that wet age-related macular degeneration (wet AMD) weighs heavily not only on the person living with the disease, but equally on those who care for them.

Overall, depression rates amongst those who care for someone with wet AMD were more than triple those seen in the general population over 65 years of age1 and those surveyed aged under 70 report even higher rates of depression, with one in nine suffering from the condition.

The research also found that the majority of carers (55 per cent) felt their role as carer has impacted upon other people

Julie Heraghty, CEO of the MD Foundation, said, “The golden years are not so golden for many of those diagnosed with wet AMD and those who care for them. From assisting with everyday tasks like cooking, getting dressed and doing the finances, to attending regular doctor appointments, the heavy burden of wet AMD can rest squarely on the shoulders of the carer.

“So many carers feel the constant worry about accidents and falls, the continuous need to stay positive, and the relentless amounts of patience, tolerance and understanding they need every day, as well as the sadness at seeing their partner lose their enjoyment in life – it’s a side of caring that many just don’t see,” said Ms. Heraghty.

Carers indicate that while looking after someone with wet AMD they’ve felt frustrated (38 per cent), sad (28 per cent) or down (25 per cent), and for over half it has a negative impact on their life – similar levels to that reported by people with wet AMD.

The research also found that the majority of carers (55 per cent) felt their role as carer has impacted upon other peopleSo many carers feel the constant worry about accidents and falls, the continuous need to stay positive. Most commonly these are family members (48 per cent), including their children (30 per cent), partner (28 per cent) or grandchildren (12 per cent).

“The ripple effect of vision loss beyond the individual is extensive. The majority of the time spouses are bearing the brunt, with the flow on effects impacting the carer’s family, the community and the healthcare system”.

Lives Put on Hold

Ms. Heraghty said it is essential that attention be turned to carers because “many have had to throw their retirement plans out the window, put their lives on hold and their health on the backburner”.

In addition to navigating the daily challenges of vision loss, almost nine out of 10 (86 per cent) carers reported that those they looked after suffered from other major chronic diseases.

Among patients with other health conditions, 53 per cent were diagnosed with arthritis and 33 per cent with heart disease.

Two thirds of carers were also contending with serious chronic disease of their own and 40 per cent found being a carer impacts their ability to manage their own health. Among carers contending with other diseases over half suffer from arthritis (54 per cent), one in four (25 per cent) have heart disease and almost one in ten (8 per cent) have cancer. Adding to the situation, around one in 10 carers had no one to look after them when they were unwell.

Associate Professor Alex Hunyor said the research reinforces the significant burden of wet AMD and highlights the importance of early detection and treatment. “There are many factors we need to take into account when treating patients with wet AMD.

“Their individual circumstances, including their partner, carer and family need to be included in decisions about the management of the disease to help reduce the overall impact of AMD,” he said.

“We know the impact of vision loss and blindness, and we understand the strain on both the person living with the disease and the person who cares for them. Anything we can do to save a person’s sight is vital; if we can detect the disease early then we have a window of opportunity to avoid or delay the heavy burden of vision loss,” he added.