Age-related macular disease and its ‘ripple effect’ of vision loss not only affects patients. Family and relatives who assume the role of carers can also experience life-changing social and financial consequences. While support services are available, more needs to be done to create awareness among those in need.
Age-related macular degeneration (AMD) is the leading cause of blindness in Australia.1 As the prevalence of AMD increases, it will become more important to consider the societal impact.1 Blindness and visual impairment related to late stage AMD impact not only the individual but also family carers.2 Specifically, substantial visual impairment due to advanced AMD means that patients have reduced ability to engage in everyday activities and family members are often called upon to provide physical and emotional support.1,3
carers are ‘hidden patients’ at risk of poor outcomes
A systematic review4 showed that time spent on caring for, or assisting, visually impaired persons was related to the degree of visual impairment, with blind persons requiring the most assistance. The time spent by carers of family members with AMD ranged from 5.8 hours/week for a person with a visual acuity of >20/32 and a cost of US$ Purchase Power Parity (PPP) 263 up to 94.1 hours/week and costs of US$ PPP 55,062 for persons with a visual acuity of ≤20/250.4 The wide range of time and resources spent on AMD highlights the broad economic impact and considerable burden of caregiving with concurrent expenses at a personal and societal level.
RISKS FOR FAMILY CARERS
Caring for loved ones with vision loss is burdensome and often leaves the carer exhausted and at risk of health problems.5 Carers have a high risk of depression during the years that they provide care,5 with a recent study showing a high prevalence of depression (35.4%) among carers of legally blind patients.6 Another study showed that ~16% of family carers of visually impaired persons experienced depressive symptoms and decreased life satisfaction.4 A UK study7 showed an elevated level of caregiver burden associated with caring for family with wet AMD, which was equivalent to the burden experienced by carers of rheumatoid arthritis and multiple sclerosis patients,8,9 and higher than for colorectal cancer patients.7 A survey conducted by Macular Disease Foundation Australia (MDFA), of their clients with late AMD and family carers, found that most carers reported helping their relatives with AMD by: grocery shopping (62%); managing patient finances (50%); cleaning (48%); assisting with cooking (46%); or helping the care recipient to leave the house (43%).10 This survey showed a higher than expected prevalence of emotional distress (>50%) including feeling sad, frustrated and/or isolated among family carers of persons with late AMD.10 This study underscores the difficulty of coping with the challenges related to assisting persons with advanced AMD. If undetected and untreated, negative outcomes related to carer distress could persist or worsen over time.11 These data support existing evidence showing that carers are ‘hidden patients’ at risk of poor outcomes;10,12 Further, healthcare providers are often forced to neglect carers and place priority on service delivery for their patients, based on budgetary and strategic planning priorities.12 This could lead to increased anxiety/ stress, resulting in greater overall burden in informal carers.12 Hence, the system appears to be failing this important group, evidenced by burnout, stress and illness in family carers.10,13
In the MDFA study, over half of surveyed carers of people with wet AMD (n=295) also neglected their own needs, and personal or family interests, and had to make changes to one or more areas of their life (e.g. retirement plans).10 This self-perceived disruption to the social support they receive from their informal network of family and friends, and the formal network (e.g. paid employment), as a result of caring for someone with AMD could perpetuate negative outcomes in caregivers.10 These findings highlight the significant sacrifices made by the family carers in order to meet the needs of the care recipient with late AMD, which could also add to the burden and distress experienced by the carer. Findings from the MDFA survey showed that very few family carers sought or received respite, and this added burden can have a negative impact upon the relationship between carer and care recipient.14
AMPLE SCOPE FOR IMPROVEMENTS
By 2030, due to demographic ageing, the estimated number of Australians with AMD will increase by >70% to 1.77 million.1 Hence, it is likely that the number of family carers serving as informal extensions of the healthcare system will rise over the next few decades, not just for AMD but also for many other conditions of ageing. The Commonwealth Government currently provides a range of support services to alleviate caregiver burden, including respite and counselling programs, and selected payments (e.g. Carer Allowance).15
Despite the importance of information and support to help family carers, interventions to increase support for family carers have lagged far behind those provided for patients
Despite this, 62% of informal caregivers surveyed in 2012 did not receive assistance from organised services.16 Of those surveyed, 34.2% were not satisfied or were unsure about the range of organised services available to assist with their caring role.16 These data strongly suggest that there is ample scope for improving the support available to carers, and further research should be undertaken into developing services that are tailored to the requirements of family carers.17 Despite the importance of information and support to help family carers, interventions to increase support for family carers have lagged far behind those provided for patients.12 Early intervention, awareness programs and coordination of community resources could alleviate carer distress.11 There is strong consensus that once information needs are met, family carers are likely to benefit from additional interventions, such as improving their problem solving skills and extending their social support network.18 Specifically, psychosocial interventions such as cognitive behavioural therapy (CBT) can decrease carer distress, by fostering a more efficient, systematic approach to caregiving that enhances motivation, and selfefficacy when providing care for a family member.11,19 CBT is a recognised efficacious strategy, and is supported by Medicare under the Better Access to Mental Health scheme. The intervention has also been shown to be effective in improving mental wellbeing in several clinical research studies.19 CBT aims to help the client to develop skills that they can use outside of the therapy session and continue using when therapy ends.19,20 Moreover, maildelivered CBT involving written materials being posted to older caregivers is optimal, as it allows them to review the materials as often as needed and at their own pace.21 In randomised clinical trials, mail-delivered CBT has established efficacy against control in a wide range of disorders.19,20
AUSTRALIAN STUDY TO IDENTIFY GAPS
A novel intervention study, taking place at Westmead Institute for Medical Research and funded by the National Health and Medical Research Council (NHMRC) and MDFA, will be the first to implement and evaluate a comprehensive support service tailored to family carers of relatives with AMD.22
Co-developed with key stakeholders or partner organisations – MDFA (the national peak body representing people with macular disease) and Carers NSW (a state-wide organisation representing informal carers), the study aims to improve the design and delivery of these organisations’ existing support services and programs. Ultimately, this will make it easier for family carers to have timely access to a coordinated, multi-component intervention targeting drivers of caregiver stress and burden.
Currently underway, the intervention includes:
1) mail-delivered cognitive behavioural therapy – to improve psychological adjustment and adaptive coping skills,
2) telephone-delivered therapeutic group sessions, which provide an opportunity for carers to explore the impacts of caring, identify ways to manage everyday life and share experiences with other carers; and
3) an information pack on available community services/ resources (e.g. financial entitlements), respite services, and support groups.
Previous research has shown that multicomponent interventions are more effective than single interventions because they use several techniques and address a variety of caregiver needs.23 Multicomponent interventions have also been shown to be more effective with older carers and those helping older patients.18,23 The efficacy of this intervention will be tested in a randomised controlled trial, which is supplemented by an economic evaluation.
This coordinated support service is innovative in that empowering family carers by helping them make the most of available sources of social and financial support, improving their coping strategies and enhancing feelings of self-efficacy, is likely to be highly effective, but is not currently part of the repertoire of caregiver support services offered in Australia. Potential key outcomes include reductions in family carer burden and distress, and improvements in overall carer well being. Economic analysis will inform whether this intervention is good value for money, and if it is feasible to roll out this service on a larger scale.22
In summary, this intervention study will ensure that MDFA and Carers NSW work together to address an existing service gap, and thereby ensure a more cohesive and efficacious approach to the provision of AMD family carer support.22 Dissemination of study findings will increase awareness of carer health issues among service providers so they can better support carers to look after their own health and wellbeing. This much needed evidence will support the advocacy work of MDFA and Carers NSW in providing knowledgeable and expert feedback to state and federal government, as well as promoting the interests of family caregivers in key policy reforms. If successful, this multi-component intervention could serve as a template for implementation trials of streamlined support services for family carers in other practice settings (e.g. carers of people with dementia, stroke or frail older adults), including other community based social service agencies.
Professor Bamini Gopinath is an epidemiologist who is actively involved in developing and conducting numerous population health studies at Centre for Vision Research, Westmead Institute for Medical Research, and University of Sydney. Using large population datasets Prof Gopinath has provided novel community-based evidence on the health determinants and health outcomes associated with a range of chronic diseases and disability. Her ongoing research in the public health field aims to translate key study findings into health policy and practice, with the intention of targeting current gaps that exist in Australian healthcare.
- Deloitte Access Economics and Mitchell, P. Eyes on the future. A clear outlook on Age-related Macular Degeneration. 2011. Deliotte Access Economics Pty Ltd.
- Koberlein J, Beifus K et al. The economic burden of visual impairment and blindness: a systematic review. BMJ Open 2013;e003471.
- Williams RA, Brody BL et al. The psychosocial impact of macular degeneration. Arch Ophthalmol 1998;514-20.
- Schmier JK, Halpern MT et al. Impact of visual impairment on use of caregiving by individuals with agerelated macular degeneration. Retina 2006;1056-62.
5.Robison J, Fortinsky R et al. A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation. J Gerontol B Psychol Sci Soc Sci 2009;788-98.
- Braich PS, Lal V et al. Burden and depression in the caregivers of blind patients in India. Ophthalmology 2012;221-6.
- Gohil R, Crosby-Nwaobi R et al. Caregiver Burden in Patients Receiving Ranibizumab Therapy for Neovascular Age Related Macular Degeneration. PLoS ONE 2015;e0129361.
- Orgul S, Gaspar AZ et al. Comparison of the severity of normal-tension glaucoma in men and women. Ophthalmologica 1994;142-4.
- Varma R, Tielsch JM et al. Race-, age-, gender-, and refractive error-related differences in the normal optic disc. Arch Ophthalmol 1994;1068-76.
- Gopinath B, Kifley A et al. Predictors of psychological distress in caregivers of older persons with wet age-related macular degeneration. Aging Ment Health 2014;1-8.
- Bambara JK, Owsley C et al. Family caregiver social problem-solving abilities and adjustment to caring for a relative with vision loss. Invest Ophthalmol Vis Sci 2009;1585-92.
- Reinhard SC, Given B, Petlick NH, Bemis A. Supporting Family Caregivers in Providing Care. In Hughes RG, editor. Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Rockville (MD): Agency for Healthcare Research and Quality (US), 2008:341-404.
- Westaway L, Wittich W et al. Depression and Burden in Spouses of Individuals with Sensory Impairment. Insight: Research and Practice in Visual Impairment and Blindness 2011;29-36.
- Vukicevic M, Heraghty J et al. Caregiver perceptions about the impact of caring for patients with wet agerelated macular degeneration. Eye (Lond) EPub 2015.
- Australian Institute of Health and Welfare. Australia’s welfare 2013. Canberra, AIHW.
- Caring in the community, Australia: Summary Findings, 2012. 4436.0. 2012. Australian Bureau of Statistics.
- Deloitte Access Economics. The economic value of informal care in Australia in 2015. Deloitte Access Economics Pty. Ltd. 2015.
- Williams K, Owen A. A contribution to research and development in the carer support sector: Lessons on effective caring. Family Matters 2009;38-46.
- Butler AC, Chapman JE et al. The empirical status of cognitive-behavioral therapy: a review of meta-analyses. Clin Psychol Rev 2006;17-31.
- Craig A, Hancock K et al. The effectiveness of group psychological intervention in enhancing perceptions of control following spinal cord injury. Aust N Z J Psychiatry 1998;112-8.
- Kavanagh D, Connolly J, White A, Kelly A, Parr J. Low intensity CBT by mail. In Bennett-Levy J, Richards D, Farrand P, Christensen H, Griffiths K, Kavanagh D, Klein B, editors. Oxford Guide to Low Intensity CBT Interventions. New York: Oxford University Press Inc., 2010:303-309.
- Gopinath B, Craig AC, Kifley A, Liew G, Bloffwitch J, Vu KV, Joachim N, Cummins R, Heraghty J, Broady T, Hayes A, Mitchell P. Implementing a multi-modal support service model for the family caregivers of persons with age-related macular degeneration: a study protocol for a randomised control trial. BMJ Open 2017; 7:e016222.
- Pinquart M, Sorensen S. Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriatr 2006;577-95.