Dementia – A smouldering fire, an unrecognised burden

By Charles J.C., MBBS
National Hospital of Sri Lanka

Dementia is a growing public health problem affecting 50 million people globally with 7.7 million new cases diagnosed each year. It is the fifth leading cause of death worldwide. In simple terms, dementia refers to progressive memory loss, resulting in loss of control over previously familiar tasks and an increasing inability to recognize familiar surroundings and people. Dementia is characterized by deterioration in cognitive function (ability to process thoughts) and impaired memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Thus, it causes significant social, occupational, psychological and behavioural impairment.

Dementia usually occurs in the elderly, around the age of 65 years, when the prevalence of dementia is 6-14%. Each five years prevalence doubles; at 85 years of age, prevalence is around 35%. Risk factors for dementia include social isolation, presence of multiple non-communicable diseases (diabetes, high blood pressure, high cholesterol levels, etc.), low educational status, low nutritional status, pathologies involving the brain, psychiatric illness (e.g. schizophrenia), poor blood pressure control, non-use of hormone replacement therapy and illicit drug use. The most common causes of dementia are Alzheimer’s disease (60%) and mini strokes (20%). Other causes include Lewy body dementia, Parkinson’s disease and rarer causes. In younger persons with memory loss, other sinister causes need to be sought.

Alzheimer’s disease results from neurodegeneration, partly due to aging. Aging is a strong independent risk factor but every elderly person will not be affected; a genetic component confers 5% risk. Meanwhile, stroke occurs in the presence of multiple co-morbidities such as diabetes, high blood pressure and high cholesterol levels. As these non-communicable diseases are more prevalent in the elderly, the risk of mini stroke is much higher in the aging population.

Dementia severely affects quality of life and activities of daily living (ADL), with detrimental effects on both the patient and family. The confidence and self-esteem of persons affected with dementia are often broken by the disease, leading to mood fluctuations, anxiety, and depression. Even highly independent people become dependent on their caregivers. Difficulties in adjusting to the changing caregiving role and withstanding the emotional and economic burden of dementia is common within affected families. Caregivers cope by using a range of interventions, from simple cognitive exercises and environmental modification to adding medications to counter behavioral problems.

A particularly challenging behavioural problem is the tendency to fill gaps in memory by making up stories or “confabulation.” For example, in response to the question, “How did you come to hospital?” a patient may respond “bus” or any other plausible mode of transport, simply because they cannot remember how they arrived at the hospital. Younger caregivers may perceive this as purposeful lying by elders, often leading to emotional outbursts, neglect or abuse.

The burden on carers is often overwhelming but remains largely unaddressed. Apart from the emotional toll, healthcare expenses may be high as a result of spending on transport, missed work, bystander expenses, and home-based nursing. Lack of financial assistance and family support add to the stress of caregiving, which progresses from helping to fill gaps in memory or searching for misplaced items to money management and total dependence, while juggling one’s own commitments.

Spouse carers and females are more subjected to caregiving burden, with depression reported in over two-thirds of carers. Poor selfcare, a higher incidence of hypertension, dyslipidemia, reduced immune function and longer duration of respiratory tract infections have been observed in carers. With terminal dementia, institutionalizing the patient, when required, and ultimately losing the patient, will necessarily have a significant impact on carers. Some are haunted by guilt, even after the patient passes away, due to neglect or substandard care. Carers need financial, social, emotional and health support to overcome all these hurdles.

Multidisciplinary team management is needed to treat dementia involving neurologists, psychiatrists, general physicians, primary care physicians, nurses, social workers and occupational therapists. Though inpatient care is required, in most instances community-based care is crucial to facilitate understanding and intervening to address family dynamics and the home environment. In Sri Lanka, there is a major gap in community-based services, an aspect that needs to be explored specifically in relation to dementia management, and, more broadly, with respect to elderly care.

Many high-income countries have national dementia policies in preparation for the growing number of people living with dementia. The World Health Organization (WHO) declared dementia a public health priority in 2017 to increase awareness, support systems, and global initiatives to address the disease burden. WHO has also launched an international surveillance platform, Global Dementia Observatory, which includes guidelines and checklists to facilitate dementia preparedness at the country level (https://www.who.int/mental_health/neurology/dementia/Global_Observatory/en/). Among them, are valuable tools for carers, such as iSupport–a manual for carers of people living with dementia (https://www.who.int/mental_health/neurology/dementia/isupport_manual/en/).

Dementia has a significant on healthcare systems, particularly with respect to expenditures; about 1% of GDP is spent on dementia globally, mostly in high-income countries. The average duration of hospital stays of people with dementia is long compared to other diseases and at least 10 times more than any other diagnosis considered. Because dementia is not an acute life-threatening problem, it does not receive the attention it should, particularly in countries like Sri Lanka that lack financial and human resources to establish multi-professional primary care teams and basic infrastructure for long term management of dementia. However, this situation will likely change in future owing to the growing disease burden, and its wide-ranging impacts on health and productivity.

Though definitive treatment has not arrived yet, many therapies are currently under investigation. As neuronal loss cannot be replaced by new cells, the scope of extant treatment is to slow the rate of neuronal loss and counter behavioural problems. Early diagnosis and optimal management will improve quality of life and reduce the carer burden.

At present, people living with dementia have little support in Sri Lanka. Aside from the Lanka Alzheimer’s Foundation, few formal support systems exist in the country, with even less in the peripheries. Establishing community-based long-term care for elders along with respite care for carers are much needed initiatives that would need to be evaluated by the public health sector as part of a national programme on dementia preparedness in Sri Lanka.

The aim of this article is to increase awareness on dementia and, in particular, highlight the burden on carers as well as the absence of support services for affected families in Sri Lanka.