Aging & Mental Health, 2015 Vol. 19, No. 3, 239246, http://dx.doi.org/10.1080/13607863.2014.924477

Predictors of psychological distress in caregivers of older persons with wet age-related macular degeneration Bamini Gopinatha*, Annette Kifleya, Rob Cumminsb, Julie Heraghtyb and Paul Mitchella a

Centre for Vision Research, Department of Ophthalmology and Westmead Millennium Institute, University of Sydney, Australia; b Macular Disease Foundation Australia, Sydney, Australia Objectives: Several studies have investigated the biopsychosocial impacts of age-related macular degeneration (AMD) in regards to the older patient, little is known about the impacts associated with caring for individuals with AMD. We aimed to determine the predictors of subjective caregiver distress and other negative outcomes associated with caring for someone with advanced AMD. Methods: Cross-sectional, self-complete survey involving 500 caregivers of persons with advanced AMD. Respondents were identified from the Macular Disease Foundation of Australia client database. Logistic regression tested the independent effects of care recipient and caregiver characteristics on study outcomes, including: caregiver psychological well-being, participation in recreational/social activities and retirement plans. Results: Around one third of caregivers self-reported a high level of care recipient dependence. Over one in two caregivers reported a negative state of mind. Comorbid chronic illnesses in the care recipient were associated with the caregiver reporting psychological distress, multivariable-adjusted odds ratio, OR, 1.45 (95% confidence intervals, CI, 1.141.86). If the care recipient was highly dependent on the caregiver, there was 99% greater likelihood of caregiver distress, OR 1.99 (95% CI 1.013.93). Comorbid chronic conditions in the care recipient was associated with 49% and 31% higher odds of the caregiver reporting disruption to other areas of their life and retirement plans related to the caregiving experience, respectively. Conclusions: A high prevalence of caregiver distress related to caring for persons with advanced AMD was observed. Level of dependence on the caregiver and presence of comorbid chronic illnesses were independent predictors of the caregiver experiencing psychological distress. Keywords: age-related macular degeneration; Macular Diseases Foundation Australia; caregiver; care recipient; psychological distress

Introduction Age-related macular degeneration (AMD) is a major cause of blindness worldwide. It is estimated that by 2020, at least 80 million people will be affected by AMD globally (Clemons, Milton, Klein, Seddon, & Ferris III, 2005). Advanced AMD, including neovascular AMD (wet) and geographic atrophy (late dry), is associated with substantial, progressive visual impairment (Lim, Mitchell, Seddon, Holz, & Wong, 2012). AMD has been shown to cause significant emotional distress and profoundly reduces quality of life and functional independence (Hassell, Lamoureux, & Keeffe, 2006; Williams, Brody, Thomas, Kaplan, & Brown, 1998). While several studies have investigated the biopsychosocial impacts of AMD in regards to the patient, little is known about the health and psychosocial impacts associated with caring for individuals with AMD. Providing care for older adults with a chronic illness has been previously described as a stressful experience that may contribute to diminishing the physical and psychological health of the caregiver (Pinquart & Sorensen, 2003). Caregivers demonstrate high levels of psychological distress, increased rates of physiological illness, lower rates of engaging in preventive health behaviors, disruptions to paid employment, as well as family and social problems (Pinquart & Sorensen, 2003; Robison, Fortinsky, Kleppinger, Shugrue, & Porter, 2009; Savla, *Corresponding author. Email: [email protected] Ó 2014 Taylor & Francis

Almeida, Davey, & Zarit, 2008). Researchers have found that the degree of distress experienced by the caregivers depends on several contextual factors (e.g. duration of caregiving) and primary stressors including the sociodemographic status of caregivers and care recipients, and the perceived stress resulting for caregiving (Kim, Chang, Rose, & Kim, 2012; Pinquart & Sorensen, 2003). To the best of our knowledge, there have been no studies that have assessed the predictors of negative outcomes experienced by those who provide care to older adults with AMD. This study will move the research forward by investigating a number of caregiver and care receiver factors and their effects on caregiver health and well-being. Our study had three key questions: (1) How time consuming is providing care for older persons with wet AMD?, (2) what are the significant predictors of psychological distress experienced by the caregiver? and (3) are aspects of a caregivers’ life (e.g. retirement plans, social activities and relationships) impacted by caring for persons with wet AMD and what predicts changes to caregiver’s life? Methods Study design and sample This was a cross-sectional, self-administered survey of patients with wet AMD and their caregivers. This study

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was conducted by the Macular Disease Foundation Australia in January to February 2013. Three thousand one hundred seventy people on the Foundation’s database, who were listed as having wet AMD, were invited to participate in the survey. A second, slightly different (caregiver) survey was included for completion by any caregiver of the patient. Similarly, a further 3282 people who were listed on the Foundation’s database as being a family member of someone with AMD or a caregiver of someone with AMD were sent the caregiver survey only. A caregiver was defined as anyone who provides care and support to a person with wet AMD including spouse/partner, family member, friend and paid care worker. Of those invited to participate, the first 500 clients with wet AMD and 500 caregivers who completed and returned the survey were considered for future analyses. As the present study focused on caregiver distress, data obtained from the surveys administered to the caregiver only were used in the current study. All responses were received anonymously and no patient identifiers were included on the response forms. All respondents gave informed consent. Post hoc, counterfactual approval was obtained from the Bellberry Human Research Ethics committee. Assessment of caregiver and care recipient characteristics Information on caregiver and care receiver characteristics was obtained from a 29-item self-administered questionnaire. For the purpose of the current study, only data obtained from the caregiver self-administered survey was used for all analyses. Demographic factors included gender and age of caregiver and care recipient. The following information was also obtained: (1) The caregiver and care recipient relationship  spouse/partner, parent, sibling, friend or employed as a carer. (2) The carer’s current living situation  living alone in house/unit, living with spouse/partner, living with children, living with family other than spouse/partner/children or living alone or with spouse/partner in retirement village/self-care unit. (3) The length of time the care recipient has been diagnosed with wet AMD  1 year, 12 years, 23 years, 36 years or >6 years. (4) Carer’s rating of the care recipients overall vision  legally blind, poor vision, slightly impaired or good vision. (5) Treatments received by the care recipient for their wet AMD  injections, no longer receiving treatment or never received any treatment. (6) Other health problems or conditions in the caregiver and care recipient  heart disease, arthritis, cancer, diabetes, depression, dementia/Alzheimer’s, obesity, other or do not have any other health problems. (7) Areas of carer’s life impacted since the care recipient was diagnosed with wet AMD  simple everyday activities, social aspects of life (e.g. contact with friends), paid work, volunteer work,

hobbies, exercise routine, sport (e.g. bowls), state of mind or no impact. (8) Activities for which the care recipient requires assistance from the caregiver  exercise and/or sport, cooking food, cleaning, gardening, making the bed, hanging laundry, reading, hobbies, playing with or caring for their grandchildren, getting dressed, personal grooming, leaving the house, travelling/holidays, using automated teller machines/electronic funds transfer at point of sale (ATMs/EFTPOS), and/or entering PIN number, playing/walking their pet, driving the car, managing their finances, climbing stairs and shopping. (9) Impact on caregiver’s state of mind as a result of caring for someone with wet AMD, feeling  more content with life, happier than ever before, more determined, more optimistic, no different mentally/emotionally, down, sad, frustrated, isolated, pessimistic or none of the above. (10) The amount of help caregiver provides to the care recipient with wet AMD  1 day/week; 23 days/week, 46 days/week, 7 days/week, 13 days/month or no set schedule, provides help as needed. (11) Length of time they assist the care recipient  5 h or constant assistance. (12) Level of dependence of the care recipient on the caregiver since diagnosis of their AMD  not at all dependent; somewhat dependent; moderately dependent; very dependent or extremely dependent. For the purpose of analyses, not at all and somewhat dependent were grouped together as low dependence (reference) compared to moderate and high dependence (grouping very and extremely dependent together). (13) Caregiver’s existing retirement situation or future retirement plans changed as a result of caring for someone with wet AMD  Yes/No. (14) Caregiver having to change/cancel any of the following activities since caring for someone with wet AMD  domestic and/or overseas travel plans, recreational activities (e.g. golf), volunteering, taking up new hobby, looking after grandchildren or no change. Statistical analysis To determine which explanatory factors were associated with aspects of caregiver distress and life impacts, we considered the conceptual framework shown in Figure 1. Statistical analyses were performed using SAS (v9.2, SAS Institute, NC). Logistic regression analysis with a forward selection strategy was used to assess, in multivariable modeling, which factors were associated with the level of care recipient dependence, the amount of care being provided by the caregiver and a range of outcome measures for the carers (e.g. subjective distress experience, changes to areas of life and retirement plans). Furthermore, for multiple category outcomes like recipient dependence, a logistic regression model with a generalized logit link was

Aging & Mental Health

Figure 1. Conceptual framework.

used. This allows for the categorical outcome with multiple categories and involves no proportional odds assumption. The model for care recipient dependence considered other care recipient-related factors (e.g. care recipient gender, presence of other chronic illnesses and receiving anti-vascular endothelial growth factor (anti-VEGF) injections). The model for daily care included care recipient dependence regardless of statistical significance, along with other care recipient (e.g. care recipient visual acuity and presence of comorbid conditions) and caregiverrelated factors (e.g. caregiver relationship and living arrangements), which remained significant after adjusting for care recipient dependence. The model for each caregiver outcome included care recipient dependence and level of care provided regardless of statistical significance, along with other care receiver and caregiver-related factors which remained significant after adjusting for care recipient dependence and amount of care. Global F tests and a 5% significance level were used as the selection criterion.

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managing patient finances (50%), cleaning (48%), assisting with cooking (46%) or helping the care recipient to leave the house (43%). Around 69% of caregivers themselves reported having diagnosed health problems (e.g. heart disease, arthritis, cancer, diabetes, depression, dementia and/or obesity). Multiple logistics regression analyses showed that care recipients with wet AMD who were female and who had compromised vision and other health conditions (e.g. heart disease, arthritis) had greater odds of the carer reporting that their care recipient had high or moderate level of dependence on them compared to low dependence (Table 2). Caring for persons with wet AMD who currently received anti-VEGF injections was associated with reduced odds of high level of dependence on the caregiver. Independent correlates of provision of daily care by the caregiver Significant predictors of daily caregiving was blindness or poor vision in the care recipient and the presence of other health conditions, as well as being the partner of the caregiver (Table 3). Having high or moderate dependence on the caregiver was associated with sevenfold and threefold higher odds of the caregiver providing daily care, respectively (Table 3). Independent correlates of caregiver experiencing psychological distress The care recipient having a high level of dependence on the caregiver and having other health conditions was associated with a 99% and 45% higher likelihood of the caregiver self-reporting a negative state of mind, respectively (Table 4). Conversely, if the care recipient was female the caregiver was 38% less likely to report a negative state of mind, respectively.

Results Most caregivers (94%) were aged 50C years. Care recipient’s vision was rated as poor, blind, reduced or good by 41%, 23%, 19% and 17% by caregivers, respectively. Table 1 shows the study characteristics of caregivers stratified by degree of visions loss. Caregivers who were helping/assisting a care recipient with wet AMD who was blind compared to a care recipient with good vision were more likely to provide daily care or constant care, have a negative state of mind and have their lifestyle and retirement plans affected due to the caregiving experience. Independent correlates of care recipient dependence on caregiver Caregivers of blind care recipients versus care recipients with good vision were also more likely to report that their care recipient had high level of dependence on them, >6 years of diagnosis of wet AMD and no current treatment with anti-VEGF injections (Table 2). Most caregivers reported helping by grocery shopping (62%),

Independent correlates of caregiver self-reporting disruption to lifestyle or retirement plans The caregiver was more likely to report that areas of their life were impacted if their care recipient was highly or moderately dependent on them, had other health conditions and/or they provided constant or 3 h of care (Table 5). In contrast, if the care recipient had been diagnosed with wet AMD for

Predictors of psychological distress in caregivers of older persons with wet age-related macular degeneration.

Several studies have investigated the biopsychosocial impacts of age-related macular degeneration (AMD) in regards to the older patient, little is kno...
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