Living with dementia: Challenges faced by patients and caregivers

“Dementia does not rob someone of their dignity; it is our reaction to dementia that often does.”

Dr Trishna Mani Kalita

(Assistant Professor of Gauhati University Centre

for Distance and Online Education)

The world is ageing at an unprecedented pace, and with increasing longevity comes a new public health challenge: dementia. Often mistaken as a natural consequence of ageing, dementia is, in fact, a progressive neurocognitive disorder that significantly impairs memory, thinking, language, judgement and the ability to perform everyday activities. More than a medical diagnosis, dementia is a life-changing condition that gradually alters relationships, family dynamics and the very identity of the person living with it. While the disease primarily affects older adults, its emotional, social and economic consequences extend far beyond the individual, placing a substantial burden on families, caregivers and healthcare systems.

According to contemporary psychiatric classification, dementia is included under major neurocognitive disorder, characterised by a marked decline in cognitive functioning severe enough to interfere with independent living. Alzheimer’s disease remains the most common cause of dementia, followed by vascular dementia, Lewy body dementia and frontotemporal dementia, among others. Although these conditions differ in their underlying pathology and clinical presentation, they share a common feature: a gradual deterioration in cognitive abilities that eventually compromises an individual’s capacity to function independently. One of the greatest misconceptions surrounding dementia is the belief that forgetfulness is an inevitable part of growing old. Dementia is very different from normal ageing, which can cause small memory lapses. It affects not only memory but also orientation, reasoning, problem-solving, communication and behaviour. Individuals may forget recent conversations, repeatedly ask the same questions, misplace familiar objects, become disoriented in known environments or experience difficulty recognising family members. As the illness progresses, even simple activities such as dressing, eating or maintaining personal hygiene may require assistance.

The diagnosis of dementia often marks the beginning of a long and emotionally demanding journey. For patients, the gradual loss of independence can be frightening and frustrating. Many experience anxiety, depression, irritability and a profound sense of helplessness as they become increasingly aware of their declining abilities. Behavioural and psychological symptoms, including agitation, wandering, sleep disturbances, hallucinations and personality changes, further complicate the illness and significantly affect the quality of life. These manifestations are not deliberate acts but consequences of progressive changes within the brain.

Equally affected are family members, who frequently become the primary caregivers. In countries like India, where institutional care remains limited and families shoulder most caregiving responsibilities, dementia becomes a shared family experience rather than an individual illness. Caring for a loved one with dementia requires patience, resilience and continuous emotional commitment, often transforming the lives of caregivers in ways that remain largely unrecognised.

As dementia progresses, its impact extends far beyond memory loss. Patients gradually lose the ability to perform routine activities that once seemed effortless. They may forget familiar routes, misplace everyday objects, struggle to manage finances or medications, and find it increasingly difficult to communicate their thoughts. Such changes often create frustration, fear and confusion. Many patients are aware that their abilities are declining, making the emotional burden as significant as the cognitive impairment itself.

Behavioural and psychological symptoms frequently become the most distressing aspect of dementia. Individuals may become restless, suspicious, anxious or depressed. Some experience hallucinations or delusions, while others wander away from home or remain awake throughout the night. These symptoms are manifestations of the disease process rather than intentional behaviours. Therefore, understanding and empathy are essential in responding to these challenges. According to psychiatric literature, dementia affects not only memory but also judgement, orientation and other higher cognitive functions, resulting in progressive functional decline. For caregivers, the diagnosis of dementia often marks the beginning of an emotionally demanding journey. In India, family members, particularly spouses, daughters and daughters-in-law, continue to provide the majority of care. They assist with feeding, bathing, dressing, administering medications, accompanying patients to hospitals and ensuring their safety throughout the day. Such responsibilities frequently require caregivers to sacrifice their careers, social engagements and personal well-being.

The emotional burden of caregiving is immense. Watching a loved one gradually lose cherished memories and eventually fail to recognise family members is deeply painful. Many caregivers experience chronic stress, anxiety, depression and sleep disturbances. Feelings of guilt and helplessness are common, especially when they find themselves unable to meet every need of the patient. Nevertheless, despite their indispensable role, caregivers often receive little recognition or psychological support.

The financial implications of dementia are equally significant. Long-term medical care, medications, diagnostic investigations, home modifications, and, in some cases, professional caregiving services place considerable economic pressure on families. In low-and middle-income countries, where specialised dementia care services remain limited, these challenges become even more pronounced.

Stigma surrounding dementia further aggravates the situation. In many communities, symptoms such as memory loss or behavioural changes are mistakenly regarded as a normal part of ageing or attributed to superstition and fate. Consequently, families often delay seeking medical consultation until the disease has reached an advanced stage. Early diagnosis is therefore crucial, as it allows timely intervention, better symptom management and appropriate planning for future care.

As the saying goes, “The true measure of a society lies in how it cares for its most vulnerable members.” This principle is particularly relevant to dementia care. Beyond medicines and clinical treatment, people living with dementia require compassion, patience and respect. Simple measures such as maintaining familiar routines, using clear and reassuring communication, encouraging social interaction and creating a safe home environment can significantly improve their quality of life.

Ultimately, dementia is not merely a neurological disorder but a profound human experience that tests the resilience of patients, families and society alike. The first step towards creating a more inclusive, compassionate, and dementia-friendly society is to acknowledge the challenges faced by both patients and carers.

With increasing life expectancy and rapid demographic transition, dementia is emerging as one of the most pressing public health challenges of the twenty-first century. India is witnessing a steady rise in its elderly population, making the burden of dementia likely to increase in the coming decades. Yet, awareness about the condition remains inadequate, specialised services are limited, and carer support is often overlooked. Addressing dementia, therefore, requires not only medical intervention but also coordinated efforts from families, communities, healthcare professionals and policymakers.

Although there is currently no definitive cure for most forms of dementia, early diagnosis can make a substantial difference. Timely medical evaluation helps identify potentially reversible causes of cognitive impairment, facilitates appropriate treatment, delays functional decline in some patients and enables families to plan for future care. Cognitive stimulation, regular physical activity, management of cardiovascular risk factors, adequate sleep, social engagement and lifelong learning have all been associated with better brain health and may reduce the risk or delay the onset of dementia in some individuals. Equally important is creating an environment where older adults feel valued, respected and socially connected rather than isolated.

Healthcare professionals have a crucial role in promoting awareness and reducing stigma. Routine cognitive screening for older adults at risk, carer counselling and community-based support programmes can greatly improve outcomes. Public health campaigns should educate people that dementia is not an inevitable consequence of ageing and that behavioural changes are symptoms of a neurological disorder rather than signs of stubbornness or mental weakness. Such awareness can encourage families to seek medical attention at an earlier stage, when interventions are most beneficial.

Family caregivers, often described as the invisible backbone of dementia care, deserve greater recognition and institutional support. Respite care services, carer education, psychological counselling and support groups can reduce carer stress and improve the quality of care provided to patients. Investment in geriatric mental health services, dementia clinics and community outreach programmes should become an integral component of healthcare planning in India.

The journey of dementia is undoubtedly challenging, but it is also a reminder of our shared humanity. A person living with dementia gradually loses memories, yet continues to need affection, dignity, reassurance and meaningful human connection. The responsibility of society is not merely to treat the disease but also to protect the identity, self-respect and quality of life of those affected.

As Maya Angelou wisely observed, “People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Even when memory fades, kindness, compassion and human warmth continue to have profound meaning. This truth lies at the heart of dementia care.

As nations prepare for an ageing future, building dementia-friendly communities must become a public health priority rather than an afterthought. Greater awareness, early diagnosis, strengthened healthcare services, sustained carer support and inclusive social policies will determine how effectively we respond to this growing challenge. Dementia may gradually diminish memory, but with empathy, scientific understanding and collective responsibility, we can ensure that it never diminishes the dignity of those who live with it.