Has dementia changed your loved one's personality? Here's how to prepare

Mint

a day ago

It came without warning: an unfounded accusation, illogical and jarring. Jamini* (name changed on request) vividly recalls the day her 87-year-old father claimed she had concealed her college-going son's marriage from him. Her reaction—sharp and unrestrained—left her deeply regretful. The ensuing conversation was unsettling for both. 'I remember being aghast and upset at what he had said,' she reflects. 'But what remains etched in my mind is my father's diminutive frame, sitting in his room, hunched over and wiping his tears after I had yelled at him.' She embraced him, seeking reconciliation, believing it to be a fleeting episode.
Similarly, Kumar* (name changed on request) was taken aback when his octogenarian mother accused him of hiding her jewelry and silk sarees. The confrontation escalated into a heated argument, culminating in him opening her steel cupboard to reveal the 'stolen' items, undisturbed on the shelves.
When it strikes, dementia serves a crushing blow on the patient and their family. Author Molly Jong-Fast's memoir, How to Lose Your Mother, is a brutal narrative of hers and her mother, author-feminist, Erica Jong's lives after the latter was diagnosed with dementia. Jong-Fast plaintively declares in the book that 'Erica Jong the person has left the planet' and describes her self-reflection and guilt in making certain decisions during caregiving. Similarly, Bruce Willis's family, including wife Emma Hemming Willis and ex-wife Demi Moore, have been open about his progressive brain disorder (frontotemporal dementia) which affects behaviour, language and executive function, worsening over time.
According to Dr Pramod Krishnan, HOD & consultant - neurology, epileptology & sleep medicine, Manipal Hospital Bengaluru, 'Dementia is most common in people aged 60 years or more. The incidence increases with every subsequent decade of life. However, less common types like frontotemporal dementia may start at a younger age.' The Journal of Global Health Reports projects an estimated 6.35 million Indians aged 60 and above to have dementia in 2025. In 2015, the figure was 4.1 million. The staggering increase could be attributed to an increase in ageing population and modifiable risk factors like diabetes, obesity, hypertension, smoking, air pollution, physical inactivity and social isolation. However, statistics offer little solace when one is confronted with the symptoms in a loved one.
Dementia can have a variety of symptoms depending on the type of dementia and the areas of the brain that are predominantly involved. In Alzheimer's dementia, apart from memory decline which is the most prominent symptom, patients can have apraxia – an inability to perform learned activity to command, for instance, brushing teeth, using a knife or scissors to cut vegetable); visio-spatial disorientation – forgetting their way in the neighbourhood and even inside the house; simultagnosia – inability to appreciate multiple elements of a picture simultaneously.
In frontotemporal dementia, patients have a change in personality. They may become socially withdrawn, apathetic, or they may become jovial, excessively talkative and show excess familiarity, behave inappropriately, adopt unusual dressing styles, display impulsive behaviours and language decline, have an inability to execute multistep activities and impaired judgement. In other dementia types, patients can have hallucinations, delusions and confabulations, dream-enacting behaviour, Parkinsonism, and gait abnormalities.
But not even a comprehensive list of symptoms can prepare a caregiver for the extent of change their life may undergo once the loved one is diagnosed with dementia. 'When my mother-in-law was in the peak of her dementia frenzy, she would use the choicest swear words to scold her caregiver when all her life, she was soft-spoken and gentle-mannered,' says H, whose father was diagnosed with early-onset Alzheimer's. Having navigated his father's Alzheimer's, he recognized the onset of dementia in his mother-in-law and advised his wife and family on how to manage the changes.
Geriatric psychiatrist Dr Helen Kales from the University of California, Davis conducted research along with her colleagues to find that caregivers who have a system to address behavioural changes experience less stress. They devised the DICE method—Describe, Investigate, Create, and Evaluate—which provides a framework for caregivers to develop tailored care plans based on subtle behavioral changes and triggers. 'I realized my mother was at her most normal in the mornings just after she woke up,' Kumar said. 'So, I would make it a point to sit with her and have coffee together. She would converse like before, give me some advice or narrate some old incidents.'
Experts suggest several behavioural changes on the part of the caregivers. For instance, if listening to news on TV agitates the patient, it is best to avoid news altogether and perhaps listen to music or watch a documentary that would calm them. Other significant actions a caregiver needs to do are: speak calmly with a relaxed body language, don't get hung up on giving facts or hard truths (lie ethically if needed), and above all, don't get into arguments. Instead, try to guide the patient to get exposure to natural light and engage them with games prescribed for dementia patients.
While dementia cannot be cured, preventive measures may delay its onset. Jamini expresses a common sentiment: 'Even after the diagnosis, there was pretty much nothing I could do. The antipsychotic and sedative medications prescribed to manage the dementia-induced mood issues have limited efficacy. I have constantly wondered what I could have done to stave off my father's dementia.'
Krishnan notes that controlling conditions like diabetes, hypertension, and cholesterol, along with abstaining from alcohol and smoking, can reduce the risk of dementia. Engaging in activities that stimulate the brain such as learning a new hobby or language, taking up sports, or solving puzzles can also be beneficial.
For caregivers like Jamini whose parents have dementia, the concern extends to their own cognitive health. 'I remain pessimistic,' she admits. Still, she has enrolled herself in yoga classes, meets friends and relatives whenever possible, goes regularly for swimming and is planning to learn Sanskrit online. 'Something may perhaps work.'
However, seeking some practical advice on how to stave off dementia, I asked my sharp-minded 104-year-old great aunt, who lives independently in Vellore, on how she managed to stave off dementia. She replied: 'I don't brood over the past nor worry about the future. I live in the moment.'
Memory loss: According to Dr Pramod Krishnan, forgetting recent events is common, especially among older people. What differentiates this from the memory loss of dementia is the fact that these errors are consistent and progressive, getting more frequent with time.
Sleep issues: Significant changes in sleep patterns, such as waking up at 3 a.m. or excessive daytime sleepiness, may signal dementia.
Personality changes: According to a study by Angelina Sutin, a professor of behavioural sciences and social medicine at Florida State University, a noticeable decline in extroversion and agreeableness before cognitive impairment becomes evident.
Other signs such as financial problems resulting from forgetting to pay bills, driving difficulties, and losing the sense of smell could appear in patients diagnosed with Alzheimer's disease, dementia with Lewy bodies (DLB), and frontotemporal dementia.
Jayanthi Madhukar is an independent journalist based in Bengaluru.