By Raj Gonsalkorale

Sri Lanka has become one of the fastest aging countries in the world. Its share of the population over 60 years of age, which was 12% in 2014, has exceeded the average of all countries in the South-East Asian region. According to population projections, this proportion will reach 28.5% by 2050. With ageing as the major non-modifiable risk factor for dementia, an epidemic of dementia is a certainty in Sri Lanka” – The National Institute of Health’s National Library of Medicine (NIH/NLM)- https://pmc.ncbi.nlm.nih.gov/articles/ PMC9469587/#:~:text= According%20to%20an%20epidemiological%20study,was%20found%20to%20be%204%25

As stated by the Alzheimer’s Association (https://www.alz.org/alzheimers-dementia/what-is-dementia) dementia is not a single disease. It’s an overall term to describe a collection of symptoms that one may experience if they are living with a variety of diseases, including Alzheimer’s disease. The social impacts of dementia include stigma and dementia patients being treated as outcasts and not being treated the same way as other people. Gradual worsening of dementia conditions will have an overall effect on health, financial circumstances, employment status and relationships with those around them may also have a negative impact on self-esteem.

Dementia is reported as a group of brain disorders that cause a gradual decline in mental abilities. As the disease progresses, people with dementia may experience the following: Memory loss: Difficulty remembering recent events, names, and making new memories, Communication difficulties: Difficulty speaking, understanding, reading, and writing, Movement problems: Difficulty moving around, losing balance, and having trouble walking , Behavior changes: Acting impulsively, becoming aggressive, or having disturbed sleep, Personality changes: Losing interest in activities, losing empathy, or having aspects of their personality change , Hallucinations: Seeing or hearing things that aren’t there, Incontinence: Losing control of their bladder and bowels, Difficulty with daily tasks: Taking longer to complete tasks, having trouble eating and drinking, or forgetting how to eat or drink, Social difficulties: Finding social situations difficult or losing interest in relationships. There is no cure for dementia, but some treatments can help manage symptoms. People with dementia will usually need help from friends or relatives, and it’s important to plan for the future early on” 

Dementia indeed is a very sad disease where the personality, habits and the routine of a loved one could drastically change, and family members would find it extremely stressful to recognise and deal with this new person” who has evolved from the one they once knew. Dementia persons are by and large helpless and needs care for even the most mundane tasks. In an increasingly changing extended family life situations where home care for dementia patients has, and is becoming a major challenge, anecdotal evidence relating to how even dementia afflicted parents have been driven away from their homes or kept locked in rooms, are abound. Traditional religious beliefs tend to ascribe dementia to a karmic consequence or a condition where God would continue to love a person despite the persons dementia. Whatever the reasoning, the afflicted person is still a human being and needs love, care and compassion as any other human being.

PubMed Central^® (PMC), a free full-text archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health’s National Library of Medicine (NIH/NLM) goes on to say that according to an epidemiological study done on dementia in semi urban and sub-urban populations in Sri Lanka, the prevalence of dementia was found to be 4%. In comparison with studies conducted in the region, this prevalence is much higher and despite having a well-established health care system in Sri Lanka almost in par with developed countries, it is not geared to handle medical and social issues of rapidly expanding elderly people and notably that of dementia patients. This situation is worsened by the scarcity of knowledge based on research, on the current status of patients with dementia”

These statistics and statements are indeed frightening as Sri Lanka does not have the political or social preparedness, infrastructure nor trained staff to manage dementia patients and associated medical and social issues. There is very likely scant knowledge about dementia related conditions, and the extent of dementia cases in the country as there is inadequate research on this topic. Chances are that in a predominantly rural based population setting, this situation is possibly even worse than imagined. Given this disturbing situation, and hitherto neglected mental condition which requires a care approach very different to other diseases, Sri Lanka must give very high priority to developing a policy setting and a long-term plan to address the many medical and social issues associated with dementia.

According to the World Bank, 80.97% of Sri Lanka’s population lived in rural areas in 2022. The rural sector is also home to four-fifths of the country’s poor people, with almost half of them being small-scale farmers. Sri Lanka’s urban population is relatively small, with only around 18% of the population living in urban areas.  The International Fund of Agricultural Development (IFAD) states that although the rural population is large, there is a dearth of research on health and socioeconomic issues in this group. 

People with dementia in rural areas face many challenges, including, limited access to care and rural areas have fewer local providers and fewer resources for primary care, specialized care, and other support services. This can lead to delayed diagnosis and treatment. Transportation issues is another major challenge in rural areas, as long distances and transportation issues can make it difficult to access care. Not just rural areas, the entire country   lacks support services for caregivers, both domestic and external, and including family members who basically are the current caregivers. Currently, as far as the writer is aware, there are no respite centres in the country with professionally trained personnel to look after dementia patients.

Social isolation is common in rural areas, which makes it harder for families to connect with others and use community resources. In this regard, beliefs and attitudes, including religious beliefs and general stigmatisation of people with mental conditions, impacts on seeking help from family, friends, or formal providers and this has a direct impact on the adequacy of dementia care. Limited education in rural areas arising from limited resources for education about dementia and dementia care, and general societal attitudes linked to lack of education, has a major impact on dementia, including recognition of dementia as the cause for mental conditions, and caregiving for those afflicted. Rural areas tend to have more older people, which resulting in a higher prevalence of dementia.

Global situation

Key facts from the WHO (https://www.who.int/news-room/fact-sheets/detail/dementia) illustrate the global situation related to dementia

• Currently more than 55 million people have dementia worldwide, over 60% of whom live in low-and middle-income countries. Every year, there are nearly 10 million new cases.
• Dementia results from a variety of diseases and injuries that affect the brain. Alzheimer disease is the most common form of dementia and may contribute to 60–70% of cases.
• Dementia is currently the seventh leading cause of death and one of the major causes of disability and dependency among older people globally.
• In 2019, dementia cost economies globally US$ 1.3 trillion, approximately 50% of these costs are attributable to care provided by informal carers (e.g. family members and close friends), who provide on average 5 hours of care and supervision per day.
• Women are disproportionately affected by dementia, both directly and indirectly. Women experience higher disability-adjusted life years and mortality due to dementia, but also provide 70% of care hours for people living with dementia

In an article titled Primary Health Care Reforms in Sri Lanka: Aiming at Preserving Universal Access to Health, Dr Susie Perera, Director, Organization Development, Ministry of Health, Sri Lanka (https://www.hsep.lk/index.php /downloads/publications-docs/34-reorganizing-primary-health-care-in-sri-lanka) states that Sri Lanka’s model of primary health care, available free through a government health system with island wide availability, forms a sound basis for providing universal health coverage. However, this system is increasingly under pressure notably from the high burden of non-communicable diseases (NCDs), increasing elderly care needs and the growing out of pocket expenditure for chronic diseases. Whilst the government’s commitment to maintaining universal health services of good quality for all continues, the need for change has been recognized. The government is exploring now how a rational model of care can best be instituted given limited resources.

The primary health care system in Sri Lanka has a community health service, (focusing mainly on maternal and child health and on communicable diseases and adopting prevention and health promotion strategies, based on the health unit system. The health units have defined catchment areas that coincide with local government administrative units and currently number 341 areas. Also known as MOH areas, they are managed by a medical doctor, supported by public health field staff), and a curative service (consisting of 496 Divisional hospitals providing both hospitalization and ambulatory services and 474 Primary Medical Care units providing only ambulatory care which function with non-specialist medical doctors and other staff).

Arguably, Sri Lanka has more than a basic infrastructure for its communicable diseases. As mentioned by Dr Perera the challenge now is increasingly from non- communicable diseases (NCDs) and elderly care needs including such needs for persons with dementia. 

The social dimension

The following abstract from a paper titled social aspects of dementia and dementia practice byIrja Haapala , Simon Biggs, Susan Kurrle (https://pubmed.ncbi.nlm.nih.gov/30475199/) is a good summary relating to the social dimension associated with dementia.

Social aspects of dementia are becoming increasingly important as part of a wider shift in emphasis from cure to care. This is partly because approaches based on finding a cure have proved far more difficult and complex than originally imagined (WHO, 2016). New evidence on the effectiveness of public health measures, that while incidence is growing as the proportion of older people in society increases its prevalence amongst older adults is actually falling, has also led to increased interest in social dimensions of prevention, lifestyle change, and practical intervention in community settings (Prince et al., 2016; Kivipelto et al., 2017). This, in turn, has led to a rediscovery of the role of supports to people living with dementia in their daily lives, the needs of informal carers, and professional activities that can maintain the social engagement of each party (Winblad et al., 2016). The expansion of practice around person-cantered care, beyond traditional institutional settings, has also contributed to a socialized view of how interactions in dementia care are thought about (Bartlett et al., 2017), as has an increased awareness of the effects of the social construction of dementia in the public mind (Biggs, 2018). Most recently, people living with dementia, and particularly with respect to younger onset dementia, have begun to find a voice and to make connections to the wider disability movement (Dementia Alliance International, 2017). Each of these developments, in their different ways, have led to a re-emphasis on psycho-social elements of dementia, its experience, and how that might translate into clinical practice and service delivery.

The emphasis on rediscovery of the role of support to people living with dementia in their daily lives, the needs of informal carers, and professional activities that can maintain the social engagement of each party, the expansion of practice around person-cantered care, beyond traditional institutional settings, has also contributed to a socialized view of how interactions in dementia care are thought about, as has an increased awareness of the effects of the social construction of dementia in the public mind” is a good guide for Sri Lankan politicians, civil society leaders, religious leaders, health experts and health officials to take a cue from in viewing interventions for dementia care. It rightly stresses the importance of the wider society and key players in the society playing a greater role in dementia patient management.

Although the shared cluster system” mentioned in Dr Perera’s paper is an important component in primary and curative care, discussions should be had whether it is a suitable model for a disease like dementia which appears to require more social and family, and caregiving approaches considering the nature of the disease and the increasing challenges it poses as a patient advances with dementia.

In this regard, it is felt that the a system should consider how best the patient could be assisted to manage his or her life and how the immediate family and the community in which the patient and caregivers live and how associated challenges like stigmatisation, disowning of patients even by close family members, lack of suitable accommodation and facilities could be provided to the patients. In all this, the stress and pressures on those close to dementia patients cannot be and should not be overlooked as it is a major challenge that has and can have a serious ripple effect leading to kindness to patients becoming the unfortunate victim.

In looking at those within societies who could provide a significant psychological, and a coordinating role between the patients, the family caregivers, the community at large and the numerous service providers at rural level including mid wives, health officials, grama sevaka’s officials, various provincial council officials, are the clergy belonging to all religious denominations. They could play a major role within the society as they are the closest to the general public and on whom the public has the most confidence and trust. In this regard, considering that a majority of the population are Buddhists, in excess of 70%, the Buddhist clergy and rural temples could play a vital role in supporting dementia caregivers.

Rather than attributing dementia as a consequence of Karma but  providing much required solace to the patients, caregivers and families of people with dementia, the Buddhist clergy and Buddhist temples could lead the way in expounding the practice of the fundamental tenant of Buddhism, Metta, loving-kindness; Karuna, compassion; Mudita, sympathetic joy; and Upekkha, equanimity. to those affected and those around the affected. The care giving approaches essentially have to be a combined effort involving primary health care institutions and experts, as well as society leaders like the clergy from all religious denominations and institutions including Christian churches, Hindu temples, Islamic mosques and Buddhist temples.

Dementia is a mental condition that has to be recognised for what it is, and appropriate care provided to persons with the it. It is well to remember that no person, however rich or powerful, is immune from being afflicted with this very unfortunate mental condition.