In early 2013, Macular Disease Foundation Australia, with funding provided by Bayer, conducted a major survey of 1,000 people with wet age-related macular degeneration and 1,000 carers of people with wet age-related macular degeneration, demonstrating the significant ‘ripple effect of macular degeneration’.
- 7% of people who care for someone with wet age-related macular degeneration report suffering from depression – more than triple the incidence seen in the general population over 65 years of age.
- Almost nine in ten (86%) carers look after someone who has other chronic diseases. Of patients with other diseases, the most prominent are arthritis (53%) and heart disease (33%).
- Two-thirds (67%) of carers report contending with their own chronic conditions; within the group 54% are living with arthritis, 25% heart disease, 11% diabetes and 8% cancer.
- Almost one in ten carers (9%) had no one to look after them when they were unwell.
- Carers report that since having become the carer of someone with wet age-related macular degeneration they have felt frustrated (38%), sad (28%) or down (25%). One in ten report having felt isolated.
- Both existing retirement situations and future retirement plans have been affected for 34% of carers.
- As many as 54% of carers have had to change activities and plans as a result of having to care for someone with wet age-related macular degeneration. Overseas (31%) and domestic (30%) travel plans are the most likely to have been cancelled or changed.
- The most common aspects of a carer’s life affected by their caring for someone with wet age-related macular degeneration are everyday activities (28%), state of mind (27%) and their social lives (25%).
- Carers often assist the person with wet age-related macular degeneration by doing the grocery shopping (62%), managing the person’s finances (50%), cleaning (48%), food preparation (46%), helping them leave the house (43%), read (39%) or use public transport (28%).
- 75% of those diagnosed with wet age-related macular degeneration never considered vision loss as a future health concern, and now living with the disease report feeling frustrated (49%), down (28%), isolated (18%) and sad (16%). However 18% report they are more determined now.
In June 2014, the results of the carer research were published in Aging and Mental Health. It is believed that this is the first time that any research has been published relating to the impact of wet age-related macular degeneration on carers of people with the disease. Read the report here.
A second paper from this research was published in Eye in 2016 giving detailed qualitative analysis of caregiver perceptions.