The problem South Africa faces is not about ageing, but whether we have an adequate and cost-effective way to provide long-term care for those who no longer have access to family caregivers or whose families can no longer afford that care. Rather than a reliance on family or agents, a holistic solution is needed.
Two themes persist throughout this year’s Benefits Barometer:
Here’s a problem that can (and did) slip off the radar if we don’t think broadly about the consequences of what we prioritise. Right now, our focus as a nation is on youth unemployment, and ageing has been put on the back burner. As we described in Benefits Barometer 2017: 'Changing world of work', South Africa doesn’t have an immediate ageing problem, particularly compared with developed economies. Even when projections suggest that the percentage of our population over 65 will triple to 15.52% in 2060 (see Figure 2.3.1) there still seems to be a greater justification in focusing on youth employment issues.
The economics of ageing in Africa, and particularly South Africa, are complex. Financial services companies (us included) are fond of arguing along these lines:
According to Alexander Forbes, only 6% of South Africans can retire comfortably. 2
What does that number mean and does it give us a clear picture of what is really happening to South Africans as they age? This quote actually refers to the percentage of pension fund members who retire from their last employer with enough savings to create a continued income stream that’s close to 75% of their last annual salary. There are many reasons this may be a misleading assessment.
Consider this: there are more than 4.4 million South Africans over the age of 60.3 Statistics South Africa reports that approximately 3.1 million people aged 60 and older (70% of that population) were recipients of the Older Person’s Grant, a means-tested grant that is given when someone can show that their assets and annual income are lower than a certain threshold (as set out in Figure 2.3.2 on page 162).4
But this doesn’t give us a true picture of how families and communities deal with the ageing of their members.
We can’t presume that the only support or income a person receives as they age is from a pension or a government grant. In South Africa, a far better indicator of whether people can retire comfortably is the level of family or community support they have. The problem is, the best statistics we can get on this level of support go back to 2007 and 2008 – and even these aren’t clear.5 What they tried to assess was how much monetary support was going into or out of households where people over 50 were living (see Tables 2.3.1 and 2.3.2). The best we can deduce from these numbers is that this support varies constantly with the flux and flow of family and community support.
If government wasn’t placing a spotlight on ageing, in all likelihood this was a function of the lived experience of ageing for most South Africans. That lived experience was an assumption of ubuntu, or reciprocity. Each generation in turn would take care of the next until it was time to take care of those of the first generation who could no longer take care of themselves.
We can’t presume that the only support or income a person receives as they age is from a pension or a government grant. In South Africa, a far better indicator of whether people can retire comfortably is the level of family or community support they have.
With over 74% of that over-60 population living in multigenerational families, it would seem the real calculus of ageing had more to do with family dynamics than measures of individual wealth. This is just where our story began in last year’s Benefits Barometer.
We related the introduction of the Social Security system in the US in 1935 as a cautionary tale. Urban migration was fragmenting the family unit as a multigenerational caregiver. The idea was that the state simply needed to provide the elderly with an income floor that would enable them to procure the necessary care. But therein lay the rub. Making funds available for frail-care or elderly support is a viable solution only if there is infrastructure to provide that support.
This is the real crisis South Africa faces. It’s not about ageing as such but whether we have an adequate and cost-effective way to provide long-term care for those who no longer have access to family caregivers, whose care may be beyond the capabilities of family members, or whose families can no longer afford to fund that care.
It would take what’s now known as the Life Esidimeni tragedy to shine a spotlight on that problem. In this particular incident, which unfolded over 2016 and 2017, at least 144 psychiatric patients died after 1 711 mentally ill people were moved from homes, managed by Life Esidimeni, to NGOs that had neither the facilities nor the funds to provide adequate care.7 Caregivers at these facilities had no proper training to deal with patients with these kinds of special needs. The accreditation process for the facilities in question was nearly non-existent.
This tragedy highlighted the delicate balance between finding solutions that are cost-effective and community-based, and promoting solutions that put the rights and needs of people first – two goals that should complement each other, but ended up competing with one another. When the ombudsman’s report into the crisis was finally made available, it highlighted that the Gauteng Department of Health would save R108 per patient per day by shifting their care from the Life Esidimeni facilities to these ill-equipped NGOs.8
If South Africa is currently battling with finding long-term care solutions for psychiatric patients, imagine the challenges that lie ahead as the double body-blow of urban migration (with potential caregivers moving to urban areas to seek work) and the hollowing out of our middle-aged adult population from HIV Aids begins to affect our capacity to provide long-term care for the aged. The multigenerational, mutual system of caregiving and support, which had addressed the needs of both the elderly and the young so effectively, is rapidly eroding.
Added to this mix is a high probability that, as medical advancements continue to reduce the number of diseases that we die from, dementia will be an increasingly dominant factor in our long-term care needs. Now we see a qualitatively different storm that’s not just about an ageing society. It’s about who will take care of the traditional carers.
I can’t remember when Rayne Stroebel’s name came up as a potential reference for this issue of ageing in South Africa, but after two hours of excited conversation he had led us to a whole new realm of understanding. More importantly, he connected us to a wide network of professionals who were also trying to get to grips with the dynamics of ageing in South Africa and the challenges these posed to long-term care. They included specialists in gerontology, geriatrics, palliative care, dementia, long-term care, retirement housing, community health work, mobile health facilities and even youth unemployment.
Most notable among these was Prof Jaco Hoffman, who was contributing to the body of work on ageing in Africa at both the University of Oxford and North-West University (NWU). It was through Prof Hoffman that we received the clearest picture of what potentially lay ahead for South Africans.
One statistic, mentioned quietly over a deceptively soothing cup of tea with Prof Hoffman early in 2017, said it all: at that point in time, South Africa had only 44 000 subsidised beds available for long-term care.9
By ‘subsidised’, we mean government covered approximately one-third of the cost, with grants and contributions from families making up the rest. And by ‘long-term care’, we were referring to servicing not just the needs of older people who were no longer able to care for themselves, but also the more than 965 000 people over 60 (38%) who had disabilities and required more hands-on care.10
For Prof Hoffman, identifying a more effective solution for long-term care might just provide some answers to other (different) issues government was focused on at that time. If we could create an integrated framework that addressed different components of the problem, we could potentially:
The question was: Which stakeholder would have the greatest interest in exploring this potential? The answer here was easy: The Gauteng Department of Social Development (DSD).
Between NWU, the Gauteng DSD and us, as Alexander Forbes, we assembled an array of interested professional bodies, not-for-profit organisations, entrepreneurs and specialists in long-term care and ageing for a multistage workshop that we titled: ‘Developing the long-term care economy in Gauteng, South Africa: Expanding opportunities for work and equality’. The workshop was run on 5 and 6 March 2018 at North-West University (Vaal Campus). This would be a research–policy–practice dialogue that would give us our first opportunity to see whether a multistakeholder collaboration exercise with government, academia, the business community and global health bodies could actually help identify a way forward.
In setting out the parameters for the workshop, Prof Hoffman stated that Gauteng’s lack of focus on the long-term care (LTC) economy presented a major missed opportunity. Developing this sector has the potential for job and enterprise creation. Developing this sector would also bring South Africa closer to achieving the sustainable development goals (SDGs) and honouring commitments to regional frameworks on gender, ageing and rights. Gauteng, as South Africa’s economic powerhouse, was ideally positioned to lead the way in exploring and setting agendas on opportunities related to the LTC economy.11
We envisaged a wonderfully interlinked solution that could do all of the below in one fell swoop:
As some of the work presented at the workshop suggested, the multiplier effect of rechanneling funds to community-healthcare solutions could be as high as one-and-a-half times. This 1.5 times multiplier represents the cumulative impact on gross domestic product achieved over three years.12
The presenters of the Saving Lives, Savings Costs workshop research acknowledged that community health platforms could indeed provide suboptimal results if poorly coordinated and under-resourced.13 But if we could remove some of the bottlenecks around training, accreditation, monitoring and funding, then optimally performing community health interventions could provide a triple benefit of substantial financial savings for the health system, added employment to the poorest segment of society – youth and lower-income women – and greater economic and health resilience among South Africans.
It was an extraordinarily creative and ambitious concept. But it demanded that we take the time to examine each element in the value chain in much closer detail. Where were the underappreciated barriers? What mechanisms could be used to remove those barriers? Could each component actually fulfil its role or would vested interests stand in our way?
Perhaps we were all a bit naïve. Many of us had come to the workshop with preconceptions of how neatly we could craft value chain. What was clearly required was a deeper understanding of the dimensions of the problem, how the current models of servicing worked, what the various stakeholders already had invested, and where some of their thinking needed to shift their invested views.
As some of the work presented at the workshop suggested, the multiplier effect of rechanneling funds to community-healthcare solutions could be as high as one-and-a-half times. This 1.5 times multiplier represents the cumulative impact on gross domestic product achieved over three years.
By Rayne Stroebel, Managing Director of GERATEC
The first of two ‘background information’ contributions comes from Rayne Stroebel, our specialist on dementia. Zeroing in on the challenges of dementia takes us to one very specific aspect of ageing – and one that perhaps demands the most immediate attention in resolving the shortage of long-term care solutions. Reading Rayne’s discussion, we get an acute sense of the human dimensions involved in these deliberations.
My mother has been diagnosed with dementia. We’ve spoken to so many people and organisations, but no one seems to have any answers. You’re our last resort. Can you help?
As a consultant to families of people living with dementia, I regularly get calls like this from people trying to find support for an elderly family member. This often comes after an incident: the family member has lashed out, got lost or been very distressed, and the family can no longer cope with the stress. Given that someone is developing dementia every three seconds, this is a situation many of us may face in the future.14
According to Alzheimer’s South Africa, in 2013 there were an estimated 44.4 million people with dementia worldwide, a number projected to increase to 75.6 million in 2030, and 135.5 million in 2050.15 With 8.2% of South Africa’s population aged over 60 (around 4.4 million) – estimated to be 14.2% (around 6.4 million) by 2050 − it’s clear there will be a considerable number of people living with dementia in our country.16 It’s estimated that 730 000 people were living with Alzheimer’s (one form of dementia) in South Africa in 2014.17 This figure could be much higher, but there’s little research and few resources to accurately assess or diagnose dementia in South Africa at the moment. Depression and non-communicable diseases, like cardiovascular disease and type 2 diabetes, are high-risk factors for developing dementia. Together with cancer and chronic lung disease, they are reaching epidemic proportions in low-income countries like ours.18
Currently, the system dismally fails people living with dementia. Given the above statistics, this situation has to change. The government and the private sector must come up with a national strategy to deal with the reality we will face as a nation. We will have to challenge our perceptions about ageing to create a more inclusive society in which people can ‘age in place’ – that is, live where they choose for as long as they are able, rather than being marginalised and institutionalised.
We need to change our minds about people whose minds have changed. (Dr Allen Power)19
Dementia is the umbrella term for a range of progressive neurological disorders affecting brain functioning. These include Alzheimer’s disease, vascular dementia, Lewy body disease, Parkinson’s-related dementia, frontal lobe dementia, HIV Aids-related dementia, and others. There are more than 100 types of diseases that may cause dementia.20
The neurological processes are as varied and complex as people’s psychological and emotional responses to their effects. Combined with the complex interplay of the person’s personality, history, physical health, and social and environmental realities, dementia manifests in a densely woven web of unique characteristics, expressions and behaviours. If you have met one person living with dementia, you have indeed met only one person living with dementia.
Getting a proper diagnosis is in itself problematic. Most South Africans do not have access to a neurologist, psychogeriatrician or psychiatrist qualified to make such a diagnosis. Sophisticated positron emission tomography (PET) scans needed to diagnose dementia are beyond the reach of most people who do not have a private medical aid.
Most medical schemes exclude full-time care for someone diagnosed with dementia or Alzheimer’s from their benefits, categorising this as nursing rather than medical care. None of the dementias is listed as prescribed minimum conditions for medical schemes, so there is no guaranteed cover. Medical aids should be forced to face the multidimensional reality of dementia as a chronic disease, alongside diabetes and cardiovascular diseases, because that is what it is. Furthermore, the diagnosis of dementia is tricky as it’s considered a ‘diagnosis by exclusion’ − there are many conditions and diseases with the same symptoms, and these should be excluded before considering dementia. Most people affected by dementia will know that something is wrong and start compensating for their memory loss or confusion. Research indicates that, on average, people will be aware of their symptoms for up to five years before seeking help. During this time, it’s common for them to be depressed, anxious and stressed (which would exacerbate the symptoms of confusion), lose weight and withdraw from socialising. A proper diagnosis is needed to ensure adequate treatment and care. It also comes as a great relief to the person and their family: a diagnosis identifies the cause of their distress and helps them verbalise their fears.
But because a diagnosis is a privilege for most South Africans, many people will fall through the cracks of the system.
People do not suffer from dementia. They suffer from the way society treats them when they have dementia.
Where do we stand in terms of this reality in South Africa? A study on responses to dementia showed that 66% of people living with dementia are believed to reside in least developed countries, yet only 10% of research into the disease is conducted in these countries.21 The study lists some of the reasons for this:
Let’s take a closer look at some of these issues in the South African context.
Currently, there is no government policy or set of guidelines to address or improve the limited support for those facing dementia, or their caregivers, in South Africa. The struggle for organisations like Alzheimer’s South Africa and Dementia SA to survive, both politically and financially, indicates that ageing, whether a person is healthy or frail, is simply not on the current political agenda. Ours is a country with a singular focus on the problems of youth and unemployment. When health has come on to the national political agenda, it’s been through the crippling lens of HIV Aids and tuberculosis.
Ironically, if we allow statistics to paint a picture of an ‘apocalyptic demography’ – seeing only the negative aspects of people living longer – this may serve to exacerbate the issue. The way this apocalyptic demography is being characterised by the US and UK press, as well as by leading scientists and the medical fraternity, could paralyse rather than mobilise the state and civil society.
Andrew Scott, Professor of Economics at London Business School, points out that the assumptions underlying the fears of this ‘demographic time bomb’ are flawed, as they are based on outdated views on chronological age.22 It’s believed that, if a significant part of a population is over 64 (the age considered ‘old’) they’re putting strain on a country’s economy as they’re no longer working, which means they need public healthcare and pensions. However, as we suggest in Benefits Barameter 2017: 'Changing world of work', the 64 of today is not what it was years ago.
As Scott explains, the ‘ageing effect’ has been offset by a ‘longevity effect’. Owing to medical advances and factors such as lower rates of smoking, mortality rates at all ages have fallen. In actuarial terms, this means people are younger for longer – and if they’re leading longer, more productive lives, they can make a greater economic contribution in their lifetimes than members of past generations.23
But the issue of care goes beyond economics. South Africa boasts one of the most advanced constitutions in the world. The Older Persons Act (No. 13 of 2006) was put in place to ‘protect the status, well-being, safety and rights of older persons. It also aims to promote their integration in the community by creating an enabling environment and promoting participation in activities with people of other ages and cultures.’24 Section 9 of the Constitution states that the elderly have the right to participate in community life, be involved in intergenerational programmes, live in environments suitable to their abilities, and have access to opportunities that cater to their social, physical, mental and emotional well-being.25 We have both a moral and legal obligation to care for the vulnerable.
The dementia discourse is not helped by skewed portrayals of dementia in popular culture and social media. In South Africa’s multicultural context, different cultures understand the expression of dementia in different ways – another potential stumbling block to addressing dementia care.
Dementia is still seen as a type of witchcraft, or simply age-related decline. In a study of isiXhosa-speaking people living in informal settlements around Cape Town, very few knew what dementia was. Yet, they gave accurate descriptions of the symptoms they observed in people living with what would be assumed to be dementia.26 The study also found that doctors and nurses were inclined to ascribe these symptoms to a normal process of ageing, for which there is no medication or treatment. Diagnosis will not be sought if there is no hope, or if cultural structures do not allow for it.
The reality in South Africa is that there’s no structured training for health practitioners at any level in the healthcare service on how to recognise and manage dementia.27 Since geriatrics and gerontology are not prioritised when training medical staff, few healthcare professionals are up to date on the complexity and specifics of dementia care.
Ultimately, many older people will need more specialised care. The limited training available for nurses and care workers who work directly with people living with dementia in care facilities results in these people being hospitalised unnecessarily, with very negative clinical outcomes. This costs both the state and private healthcare a fortune, as these people return to hospital time and again. Education in the care profession will be a first step in alleviating this ‘frequent flyer syndrome’ of constant hospital visits.
Education is not enough. We also need places of care designed for people with different abilities: specialist wards for people living with dementia in hospitals; care homes that are not medical institutions but places where people can thrive with maximum support and minimum restraint.
The systems and institutions supporting people who live with dementia and their families are inadequate the world over. In South Africa, the public healthcare system provides very little care for people living with dementia.
The crucial question remains: Where does this responsibility actually reside? With families? With government?
After diagnosis, the real challenge for families starts with finding proper care, treatment and support. Medical aids cover neither long-term care costs nor medication prescribed for the disease. And the care homes that do provide care for people living with dementia can charge anything from R18 000 to R48 000 a month. Considering that only 2% of the older population live in longterm care facilities (and 98% of these people are white), and many of these facilities do not accept people living with dementia, the onus is on families to care for these vulnerable people.
We cannot underestimate the burden of care experienced by families. According to Joubert, in 2000 26.9% of the population were caregivers – that’s an estimated 7.4 million people over 18 who had informal caregiving responsibilities.28
Finding meaningful support for families who have to balance the demands of work, children and an ageing parent is almost impossible. Caring for a family member with dementia is a daunting task, and the burden on families can result in job losses, depression and familial stress. Consider this description of what it’s like to look after a spouse with dementia:
Adopting a sole identity as our care-giver highlights our illness and strips both of us of other identities, we have become care-giver and sufferer, in a relationship of co-dependence… In this role, you may feel soon overwhelmed by the multitude of tasks, of remembering for two, of planning and organizing for two, of covering up our deficits, and grieving over our losses, rather than looking for what remains. You can quickly become exhausted, sad, depressed and in despair.29
Joubert writes that the simultaneous effects of population ageing and an intensified, quadruple burden of disease have changed the health profile of the population, resulting in a greater need for care. Formal public healthcare services fall short of providing adequate care to those who need it. At the same time, spiralling private healthcare costs place private services beyond the financial reach of most South Africans.30
After diagnosis, the real challenge for families starts with finding proper care, treatment and support. Medical aids cover neither long-term care costs nor medication prescribed for the disease.
There are very few places specialising in long-term support and care for people living with dementia. While the services offered by some of the upmarket facilities look impressive on their websites, these places are often no more than a fancy institutional setting where people are kept safe and entertained. Many of our communities are not safe for healthy children and adults, let alone vulnerable, confused older people. Hospitals, care homes, clinics and retirement villages are not equipped to care for the needs of vulnerable adults living with dementia. We create large, expensive and exclusive ‘retirement ghettos’ where people are no better off than when they were first diagnosed with dementia.
Our humanitarian concern for this segment of vulnerable people, alongside all other vulnerable people in our society, should be at the top of our political agenda. Advocacy must now become a priority as part of a national strategy to create supportive environments for people living with dementia. Civil society, in collaboration with government, should be engaged and mobilised through education to create such a strategy – not from fear of the apocalyptic demography but simply because caring for older people in the community is what a civil society must do.
Interventions that can help us support the individuals, families, carers and communities affected by dementia include:
Dr Al Power, author of Dementia Beyond Drugs and Dementia Beyond Disease, laments the ‘inadequate systems of thought and care’ that make dealing with dementia a challenge the world over.31 It is no different in South Africa.
Our focus at The Eden Alternative (see Benefits Barometer 2017: 'Changing world of work') is to move away from the mostly medical, institutional approach to ageing and dementia care to one that is person-centred. In the person-centred approach, ageing is regarded as a normal and valued part of life, and the older person becomes involved in their care planning.32 This involves listening to those with dementia, rather than simply trying to ‘fix the problem’, medically speaking.
Dr Power states that by really listening to those living with dementia, you can find personalised solutions to their care. He writes, ‘[I]t’s embarrassing to think of all my years as a doctor when I discounted people as being confused or even delusional, because I did not understand how they were expressing themselves.’ Even if those living with dementia can’t talk well or do much for themselves, ‘they almost always can express choice through their words or actions. When these are dismissed as “behaviour problems”, we miss these clues and also deprive the person of one of the most basic human rights: the right to be heard and understood,’ says Power.
The World Health Organization’s International Classification of Diseases (2003) defines dementia as:
A syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehensions, calculation, learning capacity, language and judgement. Consciousness is not clouded [our emphasis]. The impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation. This syndrome occurs in Alzheimer’s disease, in cerebrovascular disease, and in other conditions primarily or secondarily affecting the brain.33
This definition makes it clear that, while people living with dementia might find it difficult to express their emotions verbally in a way that we can comprehend, their consciousness is intact. Through listening, carers and families may learn what’s behind the distressing incidents mentioned earlier. According to Dr Power, most episodes of distress we see are not the direct result of the brain damage: ‘Usually, the root cause is a loss of various aspects of well-being (such as a sense of autonomy, meaning, or security).’34 Rather than focusing on some immediate medical intervention (such as sedation) or a distant, imagined ‘cure’, we need to ask how we alleviate the distress of people with dementia by fulfilling their underlying, human needs.
Changing the way we support ageing people starts with changing the way we think and speak about ageing. Granted, it is sometimes difficult to see ourselves or our family members as old and frail. But creating a new, more inclusive discourse on ageing can have a positive impact on how we engage with our ageing bodies, and on our interactions with ageing parents, family and community members.
In an understandable effort of society to ‘deal with’ dementia (and increased longevity in general), we have created a ‘deficit discourse’ that focuses on decline, specifically on the biomedical or neurological pathology of the brain. To challenge this fear and sense of hopelessness, we must challenge the dominant ‘tragedy dialogue’, as it is preventing government, society, families and carers from seeing that there is life after a dementia diagnosis.
This ‘tragedy dialogue’ also hurts the individual concerned, and ‘can actually lead to more suffering for those living with the diagnosis’.35 After diagnosis there is often a total disregard of the person, who in most cases is ‘written off’ by society. The depression, anxiety and stress caused by the way society treats people with dementia is often the real cause of the suffering, not the disease itself.
Words make worlds. If we continue using the terminology of decline, we will continue to place people living with dementia at a huge disadvantage. Phrases like ‘the long goodbye’, ‘fading away’, or ‘we had to say goodbye twice – once when she was diagnosed and again when she actually died’, stigmatise the person, dehumanising them as pitiful or even repulsive. This rhetoric robs people of their dignity; it marginalises and isolates people who need full-time nursing care.
Things can be different. Autonomy and agency are basic human rights for all people, not only the fit, young and healthy. Changing the narrative will change the perceptions of the disease trajectory, and this is where education is the antidote to fear-mongering. Education should start at primary school level, and be included in every curriculum at an introductory tertiary level for subjects such as psychology, medicine and sociology. Changing the discourse will help us create the inclusive civil society needed to support the well-being of this vast and fast-growing segment of the population.
With proper education on lifestyle diseases and their link to developing dementia, more people will be able to live a healthier and better life in spite of developing dementia. With more knowledge of neuroplasticity, a healthy diet and exercise − as well as the positive effects of socialising to create new neurological pathways − we can indeed change the ageing trajectory.
Changing the narrative will change the perceptions of the disease trajectory, and this is where education is the antidote to fear-mongering. Changing the discourse will help us create the inclusive civil society needed to support the well-being of this vast and fast-growing segment of the population.
With the decline of the extended family structure, and the institutionalisation of the aged and those living with dementia, comes social isolation. This can often be more difficult to cope with than memory lapses or difficulties with orientation and planning.36 Creating supportive, age-friendly environments where older people can function optimally can help prevent institutionalisation. People can live well with dementia if they’re in environments that support their complex needs and compensate for their communication challenges.
For most older people, the idea of moving to a retirement community or ‘old age home’ is not an attractive one. With the advancement of technology and more services now being mobile, the trend will be for older people to age in place – that is, to continue living in their homes or communities.37 This concept is now influencing trends in living arrangements for older people.
For people to age in place, their physical environment must support their needs. Dealing with public transport, banks and shops, or going to the pharmacy, doctor or dentist, is often very difficult for older people. Long queues, signage at a level that the average shorter, older person cannot see, small lettering, and announcements that are difficult to hear present several challenges.
Airports in South Africa can be the ultimate challenge, with endless walkways and inadequate support inhibiting travelling and mobility. Improvements here include:
Some countries, like the Netherlands, are encouraging intergenerational living arrangements where students and young working adults cohabit with older people. This has many positive spin-offs: young people have affordable accommodation while older people gain companionship and assistance, such as being taught about technology.
I started a small group home for people living with dementia in Paarl. The aim was to create a home, not an institution. Most of the 13 residents live a contented, functional life. They’re encouraged to do their own activities of daily living, help in the garden, wash dishes, cook and bake. It became clear that people with dementia can learn new things, and that in the right environment the neuroplasticity of the brain can actually help them compensate for some of the losses incurred by dementia.
With many older people living in rural areas or communities facing the effects of poverty, access to technology could help both carers and those living with dementia. Before, the trend was to move people to services (usually institutions); now, services can be brought to people.
In South Africa, telemedicine platforms are increasingly connecting patients to primary healthcare support that isn’t readily accessible to most people living in rural or remote areas. For instance, Vodacom’s mHealth system aims to lower the cost of delivering healthcare services, while increasing service efficiency and accessibility. The system empowers patients and healthcare providers, reduces market fragmentation and removes complexity.38 These platforms could help caregivers of people living with dementia in remote communities. As Prof Scott asserts, ‘Advances in anti-ageing technology could prove particularly useful for countries suffering from the ageing effect, so governments would do well to support R&D in this area.’39
Gerontechnology is the study of the interaction between technology and the unique challenges and needs of older people faced with limited physical or cognitive abilities. This emergent interdisciplinary field has developed out of a confluence of three factors:40
Thankfully, technology in care has developed from being used purely for safety, security and monitoring,41 to improving well-being and compensating for deficits due to dementia.42
Thanks to the work of Prof Mary Marshall, who has worked in dementia care for over 30 years, the use of technology purely for safety and monitoring purposes has changed to using technology to assist people to live a more connected life.43 The Technology, Ethics and Dementia guidebook created a different discourse on the use of technology and the possibilities technology can offer.44 The well-being of the person with dementia is now at the centre of the discussion, and the development of technology is based on their views and needs. Instead of using technology on people with dementia, people with dementia were given the opportunity to engage with technology, not only for reminiscence and pleasure, but also to help with remembering, socialising and engaging.45
However, in South Africa, technology is still used mostly as a surveillance method. It has become the custom to install closed-circuit television cameras in most care homes, with almost no regard for ethical issues of privacy. This is a very contentious and complex issue for care providers. In my work practice, this issue is often debated, especially given that violent crimes of abuse still occur, despite cameras being in place. There is the argument that cameras will help to convict the perpetrators. Nurses argue that they use the cameras as a ‘training tool’, in that they will view how staff deal with residents and show recordings to staff as examples of good or bad practice. However, again there is often little regard for privacy, or even consent from the resident in whose room cameras are installed.
While information and communications technology (ICT) can bring a range of services to older people – transport and mobility, healthcare, meals, maintenance and repairs, and cleaning services, to name a few – it can also provide new, affordable, real-time solutions to loneliness, being a burden to families, and health and welfare concerns. For example, families can ‘check-in’ via Skype or FaceTime at any time, regardless of where they are in the world.
It’s Never Too Late is one of many computer-based programmes using touchscreen technology to create life-story profiles, provide entertainment, and offer cognitive stimulation, spiritual engagement and opportunities to take part in physical activities through simulation programmes. Technology can also enhance relationships between people with dementia and their care partners, bringing about stronger feelings of being part of, and interacting with, society.46
From the time of diagnosis, life can change radically for people living with dementia and those close to them. To create the nationwide culture change needed to help South African families get the right kind of support, we need to move away from scaremongering statistics and challenge the discourse on ageing and dementia. If we change the way we see people living with dementia, we help change how they see themselves. Above all, we must remember that dementia is a disease of the brain, not of the soul. The human spirit is sacred, regardless of age or ability. We need to honour and respect that.
Advocate Adam Brink has been lobbying for many years to address the legal status of people living with dementia, trying to convince our lawmakers to consider instituting lasting power of attorney. In South Africa, the rights that are transferred by giving another person power of attorney are automatically considered invalid when the person who transferred those rights is diagnosed with dementia. This is because, under the Mental Health Care Act (No. 17 of 2002), mentally challenged people, including those with dementia, are seen as no longer being able to manage their affairs – or authorising someone else to do so.
Although a power of attorney can assist the elderly and frail in administering their estate, it can only be used if they are still mentally competent to make their own decisions and appreciate the concept and consequences of granting power of attorney. The power of attorney lapses when a person becomes mentally incapacitated, and can no longer manage their own affairs.47
The thinking is that someone with dementia (or any other mental illness) can’t give someone authority to make legal decisions they may no longer be able to make themselves. ‘The general rule is that majors are presumed mentally and legally competent to manage their own affairs until the contrary is proved. The onus of proving that a transaction is invalid for want of mental capacity normally rests on the party alleging it.’48
Proving this isn’t simple, given the broad considerations in defining what constitutes mental illness and assessing mental illness, and especially given the complexities (and misunderstandings) regarding the cognitive and decision-making abilities of those with dementia.
Being diagnosed with dementia does not necessarily mean that a person is irrational and incapable of making decisions or entering into legal contracts. If an early diagnosis is made, a person can and should be able to live for many years before this is the case. Even then, a lasting power of attorney can be very helpful in ensuring their wishes are honoured in a legal manner.
The alternatives to having a power of attorney – having an administrator or curator appointed by the court, or setting up a family trust – can be complex, time consuming and costly. Assisted decisionmaking with a lasting power of attorney is an important legal consideration being pursued.
Our next selection is contributed by Femada Shamam, CEO of The Association for the Aged (TAFTA). What’s core to her discussion is not just an understanding of the issues but where different stakeholders might need to reconsider their level of engagement with the issues. Again, this is the kind of insight that provides us with a more meaningful starting point for engagement.
If you want to go fast, go alone. If you want to go far, go together. (African Proverb)
The notion of collaboration and multistakeholder engagement is not new. The challenge is applying this to the dialogue on long-term care.
A good starting point for our discussion on multistakeholder collaboration is defining the outcome. The World Health Organization sets out this vision:
Regardless of their age or level or intrinsic capacity, older people have a right to a dignified and meaningful life.49
Any long-term care initiative, including multistakeholder engagement, should therefore be driven by ensuring that older people with significant loss of capacity can still experience healthy ageing. This is a move away from the traditional ‘deficit view’ of long-term care towards one which focuses on maximising functional ability, either by optimising the older person’s capacity or providing environmental support and care to compensate for loss of capacity.
Long-term care (LTC) encompasses ‘activities undertaken by others to ensure that those with significant ongoing loss of physical or mental capacity can maintain a level of ability to be and to do what they have reason to value; consistent with their basic rights, fundamental freedoms and human dignity’.50
This care is not provided in an institutional, formal setting only. The LTC dialogue is complex. It requires equal emphasis on the direct care relationship between caregivers and older people, and factors which affect the provision of care, including:
The WHO definition poses some key questions:
A discussion of all these questions is beyond our scope here. Our discussion focuses on the second question: Who are ‘the others’?
The Common African Position on Long-Term Care Systems for Africa acknowledges a rapid increase in the number of older people in Africa, from 64.5 million in 2015 to 220 million by 2050.51 It positions population ageing as a pertinent development issue which requires responses from the health, social, economic, political and environmental sectors.
Given the projected increase in population and the accompanying greater need for LTC, it’s clear that we have a case for a coordinated, collaborative strategic response. It is imperative that LTC is recognised both societally and politically as a public good.
Considering the various stakeholders in LTC gives us an opportunity to evaluate their roles and relative successes in developing an effective and responsive system. In the current South African context, we have many stakeholders playing in the LTC playground.
While South Africa has a long way to go towards having an equitable, accessible, sustainable and quality LTC system, available data and reports indicate it’s the only country in sub-Saharan Africa to have some level of state intervention in social protection and LTC.52 A key feature of this intervention is that it is means tested: only people below a certain income and wealth threshold enjoy state coverage for LTC. People with income or wealth above the thresholds have to first use up their savings and assets before being entitled to services; essentially, they have to become ‘poor’ before they become eligible for state-provided LTC.
The majority of the population is deprived of their right to LTC as they do not meet these conditions.
The state and its various departments have taken on the roles of policymaker and implementer. They also evaluate and monitor services. The Older Persons Act (No. 13 of 2006) mandates the state to set standards for LTC and monitor compliance with those standards. The two departments which impact significantly on LTC are the Department of Social Development and the Department of Health. The institutional arrangements of both departments have resulted in pockets of interventions aimed at supporting older people in need of LTC.
While significant state resources are available to support LTC, the absence of a strategic overarching framework often results in:
Not-for-profit organisations (NPOs) are positioned as charitable, benevolent entities which, in most cases, depend on the goodwill and support of society to obtain the resources needed to carry out their work. The problem with positioning these organisations exclusively as charities is that it sets parameters for what they can or cannot do.
NPOs carry deep institutional knowledge and intellectual property, the value of which is often undermined both by themselves and other stakeholders. It would be useful to explore the possibilities of NPOs taking on different roles in LTC, such as marketing their services or products as commercial commodities to those who are willing to pay for them.
This sector has been slow to join the LTC party. While businesses traditionally pursue a healthy bottom line, the impact of the long-term care responsibilities of their employees is increasingly affecting productivity. In addition, there is rising pressure on companies to increase their social responsibility initiatives.
The current experience of The Association for the Aged (TAFTA) with corporate involvement in LTC is as follows:
Engagement has usually been within the context of ‘charity work’, which results in a tax exemption certificate for the business. The idea of corporates playing an investment role in LTC needs further consideration. What is the expected return to corporates on their investment? This could be both tangible and intangible.
Collaborating with service providers in LTC could help businesses develop products and services to support employees in their informal caregiving roles. These could be packaged as part of an employee wellness programme. For organisations which recognise that employee well-being has a direct impact on productivity and profitability, the opportunity to invest in LTC should be seen as an innovative expression of employee support. It acknowledges that employees are part of a bigger societal picture and assume different roles in providing LTC to significant people in their lives.
The LTC package in businesses could also include preventative programmes that encourage employees to engage in activities that promote healthy ageing. Another aspect would be transferring skills and knowledge to employees who have caregiving responsibilities.
The role of business in the emerging LTC discourse shifts from being a benefactor of a charitable cause to a key stakeholder. Business has a role to play in all aspects of LTC, from conceptualisation to implementation. Some of the roles business could take on include:
LTC may create a ‘care economy’ which stimulates socio-economic development and offers pathways for expanding employment, innovation and entrepreneurship, particularly for the youth (even those with few qualifications).
The Common African Position on Long-Term Care Systems for Africa notes a number of key considerations of family as key stakeholders – some of which contradict our current assumptions. Evidence suggests that a reliance on families:53
The belief that families have the ability and resources to assume total responsibility for the long-term care of a family member is not only short-sighted but also compromises the sustainability of any LTC system.
In considering the family as a key stakeholder, we first have to understand how people define ‘family’. Is it a biological definition? Does it have a geographic component? Is it based on enduring relationships? Is there a hierarchy of care responsibilities, and what does this hierarchy look like? What roles do men and women play in relation to this definition of family? What is the cost of care for family members who are expected to be caregivers?
The family as a stakeholder in LTC is complex and deserves careful consideration, as it is in the very nature of its complexity that the value of this stakeholder becomes clear. Families can give insight into the needs of older adults, and add to the conversation about innovative and creative options for care. They are closest to the people who are meant to benefit from the system, which makes them expert consultants.
We propose viewing stakeholder engagement through the lens of change management, where identifying the need for change and reimagining a different future are critical to the rest of the process. This involves assessing how ready stakeholders are for change by providing platforms for dialogue and testing the boundaries of traditional roles in the LTC system.
It is imperative that the development of a model which optimises stakeholder engagement is seen as neither a start nor an end in itself. It should be viewed as a method for managing change in LTC, from a fragmented, deficit-based system to an inclusive, holistic system that supports people in their pursuit of healthy ageing throughout their lives.
The change process has already begun, with various dialogues and discourses on LTC. In March 2018 the Gauteng Department of Social Development, in collaboration with North-West University, hosted a dialogue on the long-term economy with a view to developing a provincial policy on LTC.54 This is the first initiative of this nature nationally.
We propose viewing stakeholder engagement through the lens of change management, where identifying the need for change and reimagining a different future are critical to the rest of the process. This involves assessing how ready stakeholders are for change by providing platforms for dialogue and testing the boundaries of traditional roles in the LTC system. It means we need to clearly communicate the motivation for such a change and constantly affirm that the vision of a sustainable, accessible, affordable, equitable and fair LTC system is attainable. We must acknowledge the motivation of the different role players to develop this system, whether it’s ‘What’s in it for me?’ or ‘What’s the return on my investment?’
This process lays the foundation for interrogating what the change involves. It may focus on key aspects such as:
Risk assessments must be included in the process and the costs of such a change should be realistically budgeted for.
Stakeholder analysis will identify the value and strength each stakeholder brings to the LTC system, helping to build a system that will have far-reaching impact. To steer the process forward, it may be useful to identify a core group of stakeholders who share a vision for LTC.
In South Korea, for example, a multistakeholder Ministerial Planning Committee for LTC was set up in 2013. Five years later, the LTC system was implemented, based on collaboration between insurance companies, the government and individuals. The system is managed through the Ministry of Health and Welfare, with oversight from local government, and local service providers are used for implementation.
The state can change policies for allocating resources to support a LTC system. There are global, national and regional frameworks for developing policies in support of LTC. Figure 2.3.3 lists some of these frameworks.
In engaging with organs of the state, we need to focus on what shapes the social protection agenda in Africa. Devereaux and White articulate three sets of factors:55
These factors could be applied to the LTC agenda to identify pathways for engagement.
The state’s effectiveness could be optimised by taking a coordinated approach to LTC, moving beyond the Departments of Social Development and Health to include the:
We recommend that LTC is housed with the Office of the Premier in each province, so the mandate transcends a single government department. The Office of the Premier would have a coordinating function, holding different government departments accountable for the delivery of LTC.
The state has a further role to play in setting policies that encourage businesses to invest in LTC, possibly through attractive tax incentives. This would require further investigation.
NPOs have the institutional knowledge to contribute to the conceptualisation, resource mobilisation and implementation required for an LTC system. We need to explore how they can move beyond being service providers of charitable work to entities that can have an economic impact, and may have a role to play in raising the necessary resources.
This may involve interrogating business opportunities which arise from the normal operating roles of NPOs. For example, NPOs providing residential accommodation may have expertise in facilities management. Organisations working with older people have access to life experiences which may provide an additional angle for the tourism industry.
There may be opportunities for these NPOs to redefine their role as organisational specialists, especially in terms of management. Exploring these is important in the current NPO fundraising environment, where it is no longer good enough for NPOs to adopt an ‘Oliver Twist’ attitude, approaching potential funders with bowl in hand, saying, ‘Please, sir, I want some more.’
Traditionally, the discourse on LTC puts the family at the centre in providing care. However, we need to consider the costs of family members taking on the role of caregiver without the option of financial compensation. In a collaborative multistakeholder model of LTC, family care needs to be viewed within a complementary model of state-supported LTC.
Businesses in the insurance industry may want to consider innovative ways to redeploy savings into long-term care. In China, five such insurance programmes are operational: healthcare, unemployment, work injury, maternity and elderly care. It is anticipated that LTC insurance will become the sixth social insurance programme.56
Even though these programmes are run by the government, they suggest possibilities for an LTC model for South Africa. LTC product development opportunities in the South African market require further exploration.
The case for a holistic, sustainable LTC system is compelling. Developing an equitable, accessible, efficient and fair system to support older people as their care needs increase will help us realise the vision of the World Health Organization: ‘Regardless of their age or level of intrinsic capacity, older people have a right to a dignified and meaningful life’.57
This vision can be achieved only through multistakeholder collaboration and engagement. However, the workshop on developing the long-term care economy in Gauteng58 highlighted the extraordinary complexity of getting different blocks in the value chain to work collaboratively. It seemed that our best intentions met hurdles at every level. For example:
We recognise we have only just started these discussions. Getting alignment across this value chain will no doubt be a long, slow process. But if we can keep focusing on how we can get the greatest bang for buck, our decisions about what to prioritise will be more productive. How do we combine skills development for the future world of work with job creation, with entrepreneurship, with better healthcare at lower costs, with the need for a community-based long-term-care infrastructure?
What makes this case study such an important one is that it helps us focus on the most critical challenge we face: creating a framework that strikes the right balance between offering scalable, cost-effective solutions that will attract the necessary funding, and committing to quality of life, quality of care and our rights as citizens to a level of well-being.
The Life Esidimeni tragedy showed us the perils of emphasising the former over the latter. But the multistakeholder collaboration framework – if we can keep pushing to the end – provides us with a framework that ensures we keep the end goal of social well-being foremost in our targeting.
What makes this case study such an important one is that it helps us focus on the most critical challenge we face: creating a framework that strikes the right balance between offering scalable, cost-effective solutions that will attract the necessary funding, and committing to quality of life, quality of care and our rights as citizens to a level of well-being.
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