World Alzheimer’s Day is being observed on September 21. Alzheimer’s disease has always been welcomed with a note of anxiety and fear; and even hearing that a loved one has been diagnosed with the condition instills a sense of defeat and the feeling of carrying a burden. It is a neurological disorder in which the death of brain cells occurs, causing memory loss and cognitive decline. The condition is neurodegenerative in nature, wherein at first the symptoms are mild, but gradually, they become more severe. Life for an individual suffering from Alzheimer’s disease is very hard. And for people who stay with dementia-affected individuals, caring and looking after their needs, life is even harder.
A person suffering from Alzheimer’s disease would be experiencing a decline in cognitive or behavioural functions and performance. More than 10 years ago, when Devi (name changed) was still in senior school, she found that her grandmother, who was 66-years-old at the time, was diagnosed with Alzheimer’s disease. “I did not have much of a reaction as we knew things were going downhill. She had been deteriorating for a couple of years by then, and we understood it was going to be progressive,” recalls Devi, a mental health professional in Bengaluru. She and her family had resigned to the circumstances. As Devi briefly narrates her experiences as a caregiver for her grandmother, it seems her experiences had been a mixture of pleasant and unpleasant. “For me, it was initially funny, as she would forget things and say inappropriate stuff in awkward social situations.”
But as symptoms of Alzheimer’s disease worsen, it becomes harder for people to remember recent events, to reason with different aspects of life, and to recognise people they know. “My grandmother stopped recognising us — her grandchildren,” Devi recalls. “At first, she could recognise my parents. Much later, she stopped recognising everyone, which was bad.”
A marked decline of the person’s cognitive abilities can be noticed in many forms. There is reduced ability to take in and remember new information, which can lead to repetitive questions or conversations, misplacing personal belongings, forgetting events or appointments, getting lost on a familiar route. Also noticed are impairments to reasoning, inability to follow complex tasks, poor understanding of one’s safety, inability to manage finances, and the inability to plan complex activities and activities that need to follow a sequential order. Eventually, a person with Alzheimer’s is likely to need full-time assistance.
Alzheimer’s disease not only affects the patient, but also the whole family, and particularly the main caregiver. Providing care for people with Alzheimer’s disease is particularly demanding as the needs for care escalate with the progression of the disease. This is often taxing for caregivers, often leading to high-stress levels and burnout. “My aunt did experience issues related to high stress and burnout when she was a caregiver to my late grandmother during her final years,” recollects Meenakshi Moorjani, a clinical psychologist based in Hyderabad.
The proper scheduling and maintaining of routine for patients with Alzheimer’s is important. For most families and caregivers, helping their ill family member with the daily tasks can be cumbersome. Devi said that her family had help with managing responsibilities of caregiving, as there was a caring home nurse, and also her mother’s siblings would take turns to look after her grandmother, so that she and her mother were able to take enough breaks in between. Caregiving can be seen as a hugely satisfying act as partners and family members can be drawn closer together. However, as the demands of the patient increase physically, emotionally and cognitively, often less time is available that can be devoted to the caregiver’s own needs, the children’s needs, or a career.
Thus, caregivers can often feel a significant burden on their own endurance abilities and coping mechanisms. Caregivers can report a plethora of their own physical and psychological symptoms. Caregivers often neglect their own regular healthcare needs, including health maintenance and treatment for their own health issues. Sumita Chatterji, who resides in Bengaluru, explains that it was often difficult to manage the caregiving responsibilities when her late father was suffering from Alzheimer’s disease. Most of her life plans had to be centred around him. She would often miss social and family functions to ensure that no lapse in caregiving happened.
Often, grief is the root negative emotion that caregivers experience. Dr Sowmya Krishna, a consultant psychiatrist in Bengaluru, explains that perhaps the most agonising part of looking after a family member suffering from Alzheimer’s is that the caregiving experience is like a slow bereavement process. Families witness the slow fading away of their loved one because of the illness, and later, the anticipated death. “The loss is in two aspects — one is the complete loss of personality and character, and second is the ultimate loss of the person,” she says.
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