Dementia and the Challenges of Caregiving: A Personal Account

Dementia, an incurable and neurodegenerative brain disease, affects millions of elderly in India, and remains a hidden epidemic. However, little is being done by the government to enable individuals affected by the disease to live with dignity and respect in the society.  

Dementia—a broad term used to describe a wide array of symptoms that affects the patient’s memory, thinking, and communication—is caused due to different conditions of the brain. According to a study conducted in a memory clinic in India, several subtypes of dementia have been documented in the population: Alzheimer's disease (AD), vascular dementia (VaD), frontal-temporal dementia (FTD), dementia with Lewy bodies (DLB), Huntington disease, Cruetzfeldt-Jacob disease, and HIV/AIDS-associated dementia (Alladi et al 2011). These subtypes of dementia affect all brain-related functioning, such as memory, reasoning, judgment, movement, language, abstract thinking, and behaviour. They have implications on all aspects of an individual's life: personal, family, professional, and social life (Lalu et al 2018). It becomes difficult for such persons with disability (PwDs) to make sense of the world around them, as they struggle internally to recognise people, places, things, and their own family members. 

As the disease progresses from early-stage to end-stage dementia, patients become bedridden and are entirely dependent on their family to perform their daily activities, such as grooming, washing, bathing, dressing, and eating. The lack of physical and social activity and poor nutrition to the body results in significant loss of strength and muscle mass, which makes their bodies frail, weak, and highly susceptible to developing different infections, as evidenced in the case of Vajpayee, who was eventually put on life support. What this means for family caregivers is that they cannot leave PwDs alone and would need to provide them with 24-hour assistance. Additionally, caregivers require a multidisciplinary team of medical professionals to manage the behavioural and psychological symptoms associated with the disease (BPSD), such as excessive wandering, forgetfulness, aggressiveness, excessive crying, calling out, hallucination, and paranoia. 

In India, approximately 4.1 million people are currently living with dementia. It is the primary cause of chronic disability among the elderly community, and the number is only going to double in the next 20 years (Lalu et al 2018). However, early clinical diagnosis of dementia remains a challenge in the country, because of the lack of awareness, especially on rare forms of dementia. Further, limited access to neuropsychological tests, absence of locally appropriate dementia screening and assessment tools, and availability of few state-supported healthcare services specialised in dementia care add to the challenge (Alladi et al 2011). The situation is quite grim for the majority of families as they incur substantial out-of-pocket expenses (Rao and Bharath 2013). In the absence of state-sponsored and home-based care programmes for PwDs, families are forced to rely on private doctors to visit the patients at home, due to the patient’s immobility, long waiting periods at hospitals, and transportation costs, particularly when the disease progresses to end-stage dementia. 

Various studies across the globe have also found high burden and reduced quality of life among caregivers of PwDs  (Narayan et al 2015; Tripathi and Singh 2016; Chakrabarti 2017), as they are at a high risk of developing stress, cardiovascular problems, depression, and other health complications (Gurukartick et al 2016). However, the government is yet to recognise dementia as a public health priority (Sinha 2011) and provide support for the “holistic” needs of PwDs. Based on the existing literature on dementia and our family's caregiving experience to a loved one—my mother—diagnosed with FTD, this article illustrates the sociocultural and economic challenges associated with caregiving of people with dementia and discusses the critical role the government can play to support families in managing the illness.

Social Challenges to Access Healthcare Services 

Dementia patients and their caregivers encounter stigma and shame as people in India are mostly unaware of mental illnesses. There is a general reluctance to accept that the behavioural and psychological problems exhibited by the individual could have a biomedical explanation. Instead, as made evident by an India-based study, the signs of cognitive decline or weakness in dementia patients are mostly understood as “going mad/insane,” “punishment from god,” or “being possessed by evil spirits” in the Indian society (Narayan et al 2015). Such negative social attitudes towards PwDs and their families prevent them from participating in any meaningful interaction in society, made evident by a relative who visited my mother: “Her situation is worse than a leprosy patient; it would be best for her to die than suffer like this."

Similarly, a neighbour described the disease as a curse from god, and advised us to offer prayers to god as the only way to cure her. The neighbour added: "God knows what bad she had done to deserve a punishment like this. It would be best for her to die than go through this misery.”  Such misjudgments associated with the disease leave no room for healing and recovering from the illness, as the patients’ situation worsens due to stigma, discrimination, ill-treatment, and rampant neglect in society. 

Further, it needs to be underscored that empathy, compassion, and community support, which are readily available to families affected by cancer and other physical illnesses, remain virtually non-existent for dementia patients and their caregivers in the Indian society. The following comments made by relatives and neighbours illustrate how caregivers often attract excessive scrutiny, a flurry of doubts, and are also blamed when they try to share the diagnosis of dementia with others: 

"What is dementia? I have never heard of this before. You said, the disease causes memory loss, but she seems to recognise me. The diagnosis is not right. You should consult some good doctors.” (a relative)

“I do not think she is receiving the right treatment. When I spoke to her last on the phone, she sounded good. You should consult some good doctors or take her to the hospital. There has to be some cure." (a neighbour)

The above comments illustrate how coping with dementia in India is difficult due to societal ignorance, which in turn prevents people from extending the much-needed support to PwDs. It is here that Daniel Siegel's concept of "What's shareable is bearable" is particularly useful to understand how PwDs and their caregivers can derive emotional strength from an informed community. For instance, if caregivers can openly speak about their feelings and thoughts associated with complex emotional decisions involving the care and treatment of PwDs, such as handling of faecal and urinary incontinence, and making use of artificial feeding tubes, urinary (foley) catheter, and life-support systems, they would not have to suffer in silence and be more forthcoming in asking for help.  

What makes matters worse for family caregivers is that there are very few primary healthcare professionals who are fully trained to conduct a thorough assessment of the BPSD symptoms associated with the disease. Since the symptoms of dementia overlap with other types of mental illnesses, such as schizophrenia, misdiagnosis of the disease is quite a common occurrence, even though the magnetic resonance imaging (MRI) and positron emission tomography (PET) scans of the brain can confirm the diagnosis of different subtypes of dementia.  

In my mother's case, after several rounds of trial and error, with medications prescribed by psychologists which made her condition worse, we sought advice from a neurologist who confirmed the diagnosis of FTD based on MRI and PET scans. While the diagnosis was given to us, there was no effort made to inform us on how to manage the BPSD. With the exception of one geriatrician (whom we found after months of online networking with physicians at the National Institute of Mental Health and Neurosciences, Bengaluru), most of the health professionals (neurologists, psychiatrists, psychologist, nurses, and general physicians) knew little about how to deal with the behavioural or neuropsychiatric symptoms of the disease, such as how we should talk to her when she appears angry, anxious, confused, or restless. 

There was no guidance and support offered on the management of issues related to pain, food, social engagement, faecal and urinary matters. While tube-feeding the patient, making use of urinary (foley) catheter, or the use of pharmacological treatments were suggested to us, there was no effort made to review the side-effects of these treatment options on the overall health and functioning of PwDs. Neither did health professionals speak directly with my mother, nor did they conduct a holistic assessment to gauge the progression of the disease. For instance, a practising neurologist in the presence of my mother said to us, "We cannot do anything for her now. I am sorry I have to tell you this. You are just wasting your time and money by visiting doctors.”  My mother's response to the doctor on two occasions was, "It is okay. You tried your best, and that is more than enough for me." 

Our search for palliative care—"an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual" (Khosla et al 2012)—met a dead end, as it is yet to be adopted as a widely practiced model in India. 

Economic Challenges to Provide Care

An India-based study has estimated the annual household care cost to range from Rs 69,600 to Rs 2,02,450 in urban areas and Rs 20,300 to Rs 66,025 in rural areas per month (Rao and Bharath 2013). However, it is to be noted that this cost of care does not take into account the severity of the disease and the complexity of the individual's health profile (Rao and Bharath 2013). While we are economically and linguistically privileged to consult resources available online as well as seek support from dementia specialists situated locally, nationally as well as internationally, we found that the most overlooked aspect of dementia care is the indirect costs associated with just helping PwDs perform daily activities like washing, eating, and toileting round the clock. In my mother's case, the cost of hiring professional help in a city like Ahmedabad ranged anywhere between Rs 14,000 to Rs 18,000 per month for an eight-hour day schedule and Rs 12,000 for the night schedule. Since most of them, recruited from professional personal care services for the elderly, came with little understanding of the disease, the additional unaccounted costs incurred by the family member meant taking salary deductions, or rescheduling work hours, relocating, and losing promotion opportunities to supervise and train the help hired in understanding the needs of the PwD.

Further, in choosing the home-based care option as opposed to institutional care for my mother, we had to convert her room into a mini-hospital. It involved additional costs, such as, purchasing a reclining hospital bed, air bed, wheelchair, life supports (oxygen ventilator), medical equipment, personal care supplies, prescription drugs as well as keeping a full-time nurse to attend to issues like bedsores, breathing problems, and other exigencies that may arise in the night. The cost of hiring a nurse caretaker in Ahmedabad ranged anywhere between Rs 3,000 and Rs 5,000 per night stay schedule, in addition to the house help hired mainly to attend to her general needs. The unpredictable and high cost of treatment itself shows how easily even well-to-do families can go bankrupt, addressing the long-term healthcare needs of PwDs as the disease progresses and continues. Therefore, financial health and well-being of families should be considered before developing any support and care policy for family caregivers. For instance, there should be financial counselling services for the affected families to help them identify government health schemes with special concessions for senior citizens, among others. 

Way Forward

There is an urgent need for the government to initiate a nationwide media awareness campaign, similar to the scope and scale of the Swachh Bharat Abhiyaan (for sanitation and hygiene), HumFitTohIndiaFit (for physical fitness), and Beti Bachao, Beti Padhao Yojana (for girl child education), for families affected by dementia to come forward and seek treatment and help. Increasing people's understanding of the medical, sociocultural, and economic dimensions of the disease would enable PwDs and families to engage in help-seeking behaviour and lead their lives with dignity and respect. 

It is imperative to mention here that nine years have passed since the first-ever flagship dementia report was published by the Alzheimer's and Related Disorders Society of India (ARDSI [2010]), but the government is yet to adopt the public health response framework suggested by the ARDSI. The eight broad recommendations made by the ARDSI are as follows: (i) to make dementia a national public health priority (ii) to increase funding for dementia research (iii) to raise awareness about dementia (iv) to improve dementia identification and care skills (v) to develop community support (vi) to guarantee care support packages (vii) to create comprehensive dementia care models (viii) to create new national policies and legislation for people with dementia.

As the famous saying goes, “It takes a whole village to raise a child,” the same applies when it comes to meeting the holistic needs of people with dementia. Community awareness and support are integral to the care and treatment of PwD and their families, as they should be able to access services without any fear of prejudice or discrimination in society. Given that mental health or brain health is a vital aspect of human development and growth, the government needs to prioritise routine dementia screening in primary healthcare facilities to enable the early identification of risk and preventive factors for dementia. 

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