OP-ED: Living with Alzheimer’s: Memory loss is not a normal part of ageing
Dementia is not a normal part of ageing that can be ignored. The South African government has a responsibility to dramatically increase awareness, detection and diagnosis of dementia.
In 1901, Auguste Deter, a 51-year-old woman, was admitted to a Frankfurt hospital for the mentally ill. She had been experiencing short-term memory loss, and her behaviour had changed. Aloysius Alzheimer, a neuropathologist and psychiatrist, became interested in her condition and followed her clinical course for the five years until her death. Alzheimer conducted the post-mortem and noted the classic pathological features of the disease that now bears his name. In the 112 years since Alzheimer’s was identified, we have become far more familiar with the disease. However, a cure remains a long way away and the number of people with dementia related to Alzheimer’s is growing rapidly. The world’s population is growing older at a rate not previously experienced. It is estimated that by 2050, two billion people will be over 60. Life expectancy at 60 today is approximately 20 years. An ageing population is not limited to high-income countries as is frequently supposed. Increased longevity and reduced fertility rates in low and middle-income countries are resulting in rapid population ageing in these regions and is occurring three times faster than in high-income countries. Two-thirds of the world’s elderly live in low and middle-income countries and by 2050 this will be an estimated 1.6 billion people. It is expected that the size of Africa’s elderly population will triple from 46 million in 2015 to 157 million by 2030. Dementia is an acquired degenerative brain syndrome. The single biggest risk factor for developing dementia is advanced age. It is estimated that between 20-40 percent of people aged 80 and older have dementia and it is the leading cause of disability and dependency among the elderly. Dementia affects memory, behaviour, language, motor skills and ability to recognise people and objects. It is a progressive condition that initially results in the loss of ability to perform complex daily tasks such as managing finances, work, driving and doing household chores. Further losses in managing the personal activities of daily living such as dressing, bathing, personal hygiene, locomotion and feeding eventually occur. Alzheimer’s Disease is responsible for 70-80 percent of dementia cases. Other important causes include vascular disease, traumatic brain injury and HIV. Alzheimer’s is a slow progressive disease. The preclinical period, where degenerative changes in the brain are occurring, may start up to 15 years before diagnosis. Once a diagnosis is made, the average life expectancy of someone living with Alzheimer’s disease is estimated to be 8-12 years. There are no available drugs that will reverse dementia and treatment is most often focused on managing behavioural and psychological symptoms associated with dementia. More than 50 million people have dementia worldwide and every three seconds someone in the world develops it. By 2050, around 90 million of the 131 million people expected to have dementia will live in low and middle-income countries and 7.62 million will be in Sub-Saharan Africa. Prevalence of dementia is expected to be about six percent of people in the region over the age of 65. This presents a particularly large challenge for countries with limited health and care resources, which already face a significant burden of maternal, child and communicable diseases (most notably HIV) and injuries, alongside a growing burden of chronic non-communicable diseases. Unfortunately, the global response to dementia has been slow and it remains under-diagnosed, poorly treated and highly stigmatised, particularly in developing countries. Health systems in sub-Saharan Africa are mainly focused on addressing infectious disease and maternal and child health, leaving countries unprepared for the challenge of the growing number of people with dementia. South Africa has the highest percentage of older people in Africa. Dementia is therefore likely to have a particularly large impact on our already strained health and social welfare systems. According to 2011 census data, about 2.2 million people in South Africa have some sort of dementia. Illiteracy and low levels of education are also risk factors, meaning poor people may be disproportionately affected. Caring for people with dementia has significant economic and social costs for people with dementia and their families. People with dementia, particularly at more advanced stages, require intensive care and support, which is costly. People with dementia are more likely to be hospitalised, have longer stays and are at increased risk of negative outcomes. The estimated cost of dementia in southern Africa in 2015 is estimated to be R33.8-billion. The bulk of this cost is borne by informal carers, mostly women, who must often forgo paid employment to care for people with dementia in the absence of adequate social sector spending or medical care. Despite it being a rapidly growing problem, there is limited awareness of dementia among health professionals and few targeted services are available, particularly in rural areas. Primary care practitioners often consider dementia symptoms to be part of normal ageing, have no understanding of the care and treatment options available and therefore do not offer further care. There are also few specialists focused on dementia care. South Africa has fewer than 20 geriatricians and fewer than 10 old-age psychiatrists for a population of over four million older people. The long-term care of people with dementia presents numerous challenges. While affluent people may be able to afford to pay for home carers or care at for-profit nursing homes, the cost of which can be in excess of R40,000 a month, options are extremely limited for those with fewer means. Only those with advanced functional disability, who qualify for old age grants, are eligible for subsidised care and even these spaces are limited and largely unavailable in rural areas. With inadequate state subsidies, nonprofit long-term care facilities for older adults are chronically underfunded and poorly resourced. Staff are often poorly trained on dementia care. As a result, the care needs of people with dementia are often unmet. Those who cannot afford private care or are unable to access state-funded facilities rely on family support, which is largely provided by other family members who are often elderly themselves. Caregiving work is generally undervalued in South Africa and the resources to provide care in community settings are not acknowledged or provided for. The grant-in-aid, a social grant of R400 a month, is available to old age grant beneficiaries in need of permanent care. This additional income goes some way to subsidising the costs of care in home settings, but is insufficient to either cover care costs or act as a substitute income for a caregiver. Dementia is poorly understood and highly stigmatised in many communities. This contributes to failures to diagnose and treat the illness. It is frequently understood as bewitchment, often leading to social isolation of sufferers and their family members. The nature of dementia also means that those who have it can be disruptive and difficult to care for, which negatively impacts family relationships and can lead to abuse and neglect. Dementia is not a normal part of ageing that can be ignored. The South African government has a responsibility to dramatically increase awareness, detection and diagnosis of dementia. Earlier diagnosis and treatment of dementia is essential to reducing health and care costs, improving access to and effectiveness of services and reducing vulnerability to disability and social exclusion. This requires awareness-raising campaigns and training of caregivers and health workers, including lower-skilled health workers who can be trained to take on many of the tasks of dementia care. Our growing need for care workers could, on a more positive note, also provide career opportunities for the large number of unemployed young people in our country. While we don’t have a cure for Alzheimer’s, we do have an obligation to care for people living with dementia. The time has passed where society can devolve the responsibility of care on to the individual. It is incumbent upon national governments and global bodies to implement policies and plans to deal with Alzheimer’s Disease and related dementias. DM World Alzheimer’s Day is on 21 September. September is World Alzheimer’s Month, an international campaign to raise dementia awareness and challenge stigma. For more information on Alzheimer’s Month, visit https://www.alz.co.uk/ and for information on local services and activities visit; https://alzheimers.org.za or https://www.dementiasa.org/ Gabrielle Kelly is a senior research associate at the Samson Institute For Ageing Research (www.sifar.org.za). She has a PhD in sociology from UCT. From 2014-16, she was a Fox International Fellow, Macmillan Centre at Yale University. Her research interests include disability grant systems, social grants and most recently the health and wellbeing of older people living in the community.