There are a few things that I thought were scary. Death, separation, losing my job etc. But that changed about 5 years ago when I got one of the most devastating news of my life. That news was delivered to me in the psychiatry ward of the hospital in the City Hospital, where the doctor told me that my mother was diagnosed with Dementia or what is known now as Major Neurocognitive disorder. The psychiatrist told me and my father that she is “slipping by the day” and honestly, as much as we knew this, it was one of the toughest things I have heard. From that day onwards, I made it almost my mission to educate myself about the disorder and be a part of as many support groups as possible. My mother passed away a year ago but the education and awareness shouldn’t stop, right?
Dementia is a gradual deterioration of brain functioning that has serious effects on an individual’s memory, language, judgement, reasoning etc. It doesn’t just affect the cognitive abilities of the individual but also the emotions, social behaviour of the person, motivation and even their physical functioning. It is a syndrome that lasts life-long and can result in other brain anomalies like Alzheimer’s disease, brain strokes etc. It usually occurs in the older population but can also take the form of what is known as “early-onset”, i.e onset in the earlier stages of life.
Dementia affects everyone very differently. My mother started showing symptoms of dementia about a year and a half before her diagnosis. She started forgetting things, not just minor forgetfulness but severely forgetting things. It got worse with time but it started with forgetting to take her medication, then forgetting to eat meals or forgetting that she has had meals, forgetting the way to her own home and then at some later stages, even forgetting names of her close family members, even her own daughter. These symptoms are in stages.
Early stage: This is the stage that can be easily neglected. It includes symptoms like forgetfulness, losing track of time, getting lost in familiar places.
Middle Stage: This is a stage of progressed and deteriorated dementia and the symptoms may become more apparent. Forgetting recent events/ people’s names, difficulty with communication, behavioural changes like repeated questioning, confusion, needing help personal hygiene.
Late Stage: This stage is quite possibly the most difficult stage of the disorder where the individual is nearly completely dependent on others and/or is inactive. They may become unaware of the time and place, have difficulty recognising familiar people, have severe behavioural changes like increased aggression, lack of communication, confusion etc.
Some common symptoms may include memory loss, inability to communicate, confusion, disorientation, losing visual and spatial abilities, problems with reasoning, problem-solving, planning and organizing, affected motor skills. It also affects the individuals psychological capacities. It may cause increased aggression, anxiety, paranoia, depression, etc. individuals with dementia may suffer from memory loss of recent activities, they may find it difficult to complete routine tasks. They may have problems with abstract thinking and feel disoriented. The families of the individuals may observe personality and mood changes in the individual. Dementia is caused by damage to brain cells which inhibits the brain cells to communicate with each other. This affects communication, thinking, behaviour and feelings. Different types of dementia are associated with particular cell damage in certain specific areas of the brain. Hippocampus, the area of the brain associated with learning and memory in the brain, is often the first to be damaged. Thus, the earliest symptoms of Alzheimer’s are memory loss. Family history of dementia puts the further generation at risk of developing symptoms later in life. Some other risk factors associated with dementia include heavy usage of alcohol, drugs, smoking, lack of exercise and unhealthy diet, vitamin B-12 deficiency.
Some types of dementia are:
Neurocognitive disorder caused by Alzheimer’s disease: This is the most common type of dementia with about 60%-80% individuals being diagnosed with dementia falling under this category. This includes multiple deficits that develop gradually. The impairments are predominantly associated with cognition, judgement, memory and reasoning. Their interest in new activities reduces and leads to them being socially isolated. They are unable to integrate new information and connect it with the pre-existing information and hence they fail to form new associations. They can become increasingly agitated, disoriented, anxious and depressed. They may also find it difficult to communicate using language (aphasia), disability in motor functioning (apraxia), inability to recognise objects (agnosia) accompanied by various other cognitive problems. It usually occurs during 60s or 70s or may occur rarely in the early stages of an individual’s life (early onset). Research shows that alzheimers might be more prevalent in women and a possible explanation could be the loss of estrogen in women in the later stages of life. There is also some research that suggests certain populations are at a higher risk of Alzheimer's (eg: Japanese, Nigerian, certain Native American and Amish backgrounds). There are also research findings that suggest that level of education may predict delay in observation of symptoms but their condition can deteriorate rapidly once the symptoms do occur.
Neurocognitive disorder caused by Vascular Dementia: this is the second most common dementia after Alzherimer’s disease. Vascular refers to blood vessels. If the blood vessels that carry oxygenated blood to the brain are blocked or damaged, they can lead to severe impairment in the brain. One the consequences could be dementia. This can affect a person in multiple ways but some of the common impairments could be decline in the speed of information processing, complex decision-making, motor functioning etc. the rate of this type of dementia is higher in men. The onset of vascular dementia tends to be more sudden as it could be a result of stroke, injury etc.
Frontotemporal Neurocognitive disorder: The degeneration of nerve cells and their connections in the frontal and temporal lobes of the brain i.e those parts of the brain that are responsible for and affect our language, behaviour and personality is the cause of this dementia. It typically has 2 variants- inappropriate behaviour and inappropriate language.
Neurocognitive disorder caused by Lewy body disease: Lewy bodies are small balloon-like clumps of protein in the brain that affect the brain cells. The onset of disorder is gradual and is responsible for impairments in attention, alertness, vivid hallucination, uncoordinated or slow movement, tremors, and rigidity (parkinsonism).
Neurocognitive disorder caused by Parkinson’s disease: Parkinson's disease is a degenerative disease that affects 1 out of 1000 people in the world. These individuals are characterised by stooped posture, slow body movements, tremors, jerkiness, voice being too softened. The changes in dopamine lead to decline in motor movements.
Neurocognitive disorder caused by Huntington’s disease: This is a genetic disorder that affects the motor movements initially and gradually tends to affect the cognitive functioning too.
Neurocognitive disorder caused by Creutzfeldt-Jakob disease: this is a rare disease that leads to deposits of infectious proteins called prions. This is more commonly known as “mad cow disease” and had even led to a beef ban in the UK as the disease was thought to be contracted from cows. It may also be caused by exposure to diseased brain or nervous system tissue, such as from a cornea transplant. Signs and symptoms of this fatal condition usually appear after age 60.
Neurocognitive disorder caused by Traumatic brain injury (TBI): persistent head injury can lead to this type of dementia. Individuals in the field of boxing, wrestling, football, defence are at a higher risk of this. Traffic, assault, falls, suicide attempts may also be some of the reasons.
Substance/medication induced Neurocognitive disorder: Prolonged drug use accompanied by poor diet can lead to dementia. About 7% of the individuals with a history of alcoholism meet the criteria for diagnosis of dementia. This form of dementia is similar to the other forms where it leads to memory impairment, cognitive and motor dysfunctions.
Treatment of dementia depends upon the stage of the disorder. It is possible to mellow down the symptoms but the condition cannot be cured. Palliative care is advised for individuals who are in the later stages of the disorder when they are completely dependent on others. Palliative care may include assistance to the individual with daily living, medication which can help to improve cognitive functioning, mood, behaviour and counseling. Dementia can lead to increased anger, fear, anxiety, disorientation. Hence emotional support from families, professionals is also helpful. Unfortunately, the gradual deterioration of the condition of the individual may be difficult for the families to manage. The physical, financial and emotional effects of dementia on the families of the individuals are tremendous. What could also help is an early diagnosis so as to optimal management of the disorder and treating any psychological or cognitive symptoms.
There’s no fixed way to prevent dementia. A generally healthy lifestyle may be beneficial according to research. Mentally stimulating activities like puzzles, word plays, mathematics, logical reasoning may be effective in delaying the onset of dementia and reduce its effects. Reducing substance intake is also advised. Staying physically active and socially involved, maintaining a healthy diet, getting quality sleep is also helpful. Treating cardiovascular diseases, high blood pressure, diabetes is also effective.
Dementia has a significant impact on the families and caregivers of the individual. It can be an extremely stressful journey that is often accompanied by emotional turmoil along-with financial and social burdens. The person may behave completely differently, forget most of everything, get agitated and even stubborn. The families need to prepare themselves for what seems like a very stressful journey ahead. If the individual has been diagnosed in the early stages, the family members can support their loved ones by encouraging independence, assisting them in certain cognitive domains and even at times stop them from doing certain activities. Families may also want to map out their finances as care for dementia can get expensive. In terms of taking care of the individual, giving them a variety of tasks involving sensory stimulation like dancing, listening to music, painting, gardening can keep them engaged and stimulated. Outdoor activities with them can be very helpful too. Try to keep a routine and structure throughout the day. Planning meal-times, medications, rest times can help the individual with orientation. Try to involve the individual in several activities. They may resist or be unable to perform them but encouraging them to do those activities may help to stimulate them mentally. Try to seek counselling for yourselves too. Accepting the changes in the loved one who’s condition may gradually deteriorate can be quite difficult. Hence, seeking help can be very helpful.
I remember when my mother forgot who I was, I remember her getting extremely angry at times for very minute things, she would forget that she had had food and when I would tell her that she had had it, she would doubt us. She would say that we were lying and would want food. I remember it being too hard at times to even look at her condition during her final stage of life. It was very difficult. But I remember having some beautiful memories too. Like painting with her, making her favourite food and eating it with her on the family table, playing cards with her. Cherish them, love them after all they say that old age is like a second childhood. Just that this child can be a little too stubborn at times!
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This article on 'Dementia' has been contributed by Smruti Pusalkar, who is a graduate Psychology student from Fergusson College. She is part of the Global Internship Research Program (GIRP), which is under the leadership and guidance of Anil Thomas. GIRP is an Umang Foundation Trust initiative to encourage young adults across our globe to showcase their research skills in psychology and to present it in creative content expression.
Smruti wishes to develop herself to be a more patient listener and a sharp observer to understand the happenings of the world and grow increasingly empathetic. She is passionate about mental health and well being and plans to pursue a career in this field. She is extremely curious about psychology and wants to spread awareness about mental health problems to help those in need.
Anil is an internationally certified NLP Master Practitioner and Gestalt Therapist. He has conducted NLP Training in Mumbai, and across 6 other countries. The NLP practitioner course is conducted twice every year. To get your NLP certification