Novel research that studies the well-being and the provision and coordination of care for older people in South Africa, including those living with dementia - a marginalised and overlooked sector of society - has earned Roxanne Jacobs a PhD in psychiatry from the University of Cape Town (UCT).
Roxanne will join dozens of other PhD graduands from faculties across the university when they are capped in the Sarah Baartman Hall on Friday, 21 July. The day marks the end of years of grit, determination and personal and professional sacrifice by graduands and their families, as well as the academics who have contributed to their success.
Roxanne started her PhD in June 2019. Her dissertation is titled: "Elder abuse in South Africa: measurement, prevalence and risk".
Nested in the Strengthening Responses to Dementia in Developing Countries (STRIDE) project - pioneered by the Care Policy and Evaluation Centre at the London School of Economics and Political Science, in collaboration with UCT and Stellenbosch University's Centre for Public Mental Health - her research incorporated a range of themes. These, she said, included analysing the services available for older people with dementia and those subjected to elder abuse. She also explored and generated evidence on the prevalence and predictors of self-reported elder abuse, as well as the risks of abuse for older people without dementia.
"We know that elder abuse is a global, public health and human rights concern. It's often hidden by the perpetrator and older people themselves."
"We know that elder abuse is a global, public health and human rights concern. It's often hidden by the perpetrator and older people themselves. Currently, the World Health Organization estimates that only 4% of elder abuse cases are actually reported, because older people fear the consequences: retaliation or discontinuance of care or support that they are desperately dependent on from the perpetrator," she said. "Our research aimed to shed some much-needed light on this very important topic."
High rates of elder abuse
Alarmingly, approximately one in 10 older adults (65 years and older) have experienced some level of abuse, and financial and emotional abuse were ranked as most common. Perpetrators were reported to be family members who share the same home with the older person, or non-family members with whom older folk have personal relationships. More than half of respondents who participated in this study also reported that money and/or other valuable items were taken from them against their will, and that these incidents involved strangers.
Sadly, older people are also at high risk of experiencing abuse perpetuated by their caregivers. Roxanne said more than half of the carers (51.8%) who participated in the study were considered moderate risk, while 14.3% were red flagged as high risk for perpetuating abuse.
"Carers for people living with dementia were four times more likely to abuse the older person in their care than carers of people without dementia. The high carer burden and neuropsychiatric symptoms of the older person cared for were significant predictors of abuse risk. This suggests that we can minimise this risk by effectively supporting carers and people living with dementia," she said.
A dearth of mental health professionals
Roxanne's work has yielded several other findings. To start, South Africa lacks the services and the mental health professionals to adequately support patients with dementia. And the ripple effects are enormous, because this situation leads to delayed or misdiagnosis, and inadequate post-diagnostic support and care. She said the country also lacks formal surveillance and monitoring systems, as well as support and protective structures and services to deal with and address elder abuse.
"This is a serious problem. With a lack of care and prioritisation, so much can and does go wrong - older people, especially those with dementia, are subjected to poor diagnostic referrals and support systems; and in some cases, this increases the risk of elder abuse and neglect, because they are not getting the care they need."
Roxanne encouraged researchers to conduct more in-depth studies on the prevalence and risk of elder abuse, to help inform priority-setting and enhance health, social care and support services in the country.
Critical gaps
She also recommended that this work starts right away. As it stands, very little research focuses specifically on elder abuse in South Africa, and this is difficult to believe, Roxanne said, considering the country's high levels of violent crime.
"There is practically a complete absence [of data on] the estimated prevalence of elder abuse in South Africa."
"There is practically a complete absence [of data on] the estimated prevalence of elder abuse in South Africa. Routine reporting or monitoring and surveillance on issues that relate to elder abuse doesn't exist either. We assume that it's high, but we really don't know; and there are critical gaps in evidence that we need to fill, to inform responses and priority-setting," she said.
To respond and prevent elder abuse and protect older people in the country, she said, focusing on priority-setting and developing targeted responses that are culturally appropriate is a crucial step in the process.
Making an impact
She hopes that her research will broaden healthcare and social practitioners' understanding of what constitutes elder abuse; provide them with the tools they need to screen and detect it; and encourage additional investigations into the links between functional impairment and the increased risk of abuse, to strengthen health and social care systems.
"We also need to strengthen support services for people living with dementia and their carers to minimise the risk of abuse, reduce the burden on carers and increase overall quality of life for older people and their families," she said.
"Africa is a young continent and South Africa has many competing priorities, such as high levels of unemployment and HIV/AIDS. Therefore, ageing in Africa receives less attention and budget for related services. If we focus on promoting the health and well-being of older people and their carers, we'll be able to link youth and ageing agendas and reduce health risks and the risk of abuse. I hope this work will stimulate interest in this area and promote investment in healthy ageing for all."
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Rigorous, rewarding
As Roxanne prepares for graduation and her life slowly returns to normal, she said that despite the many bumps in the road, she always chooses to focus on the positive, standout moments. And over the years there have been many. These, she said, include working alongside wonderful research teams, learning new skills and publicising her work at the Alzheimer's Disease and International Conferences in 2020 and 2022, despite the COVID-19 pandemic.
"It was a great feeling to see years of hard work come together [at the conference]. The engagement with fellow researchers on this platform really provided me, an academic and early-career researcher, with a growing opportunity," she said.
"Yes, things get tough sometimes; and when they do, one can't [allow] circumstances to dictate the outcome."
"Yes, things get tough sometimes; and when they do, one can't [allow] circumstances to dictate the outcome. There comes a point where we need to work difficult circumstances away. It [isn't easy], but we must simply get on with it."
