The world is greying fast. World Health Organization (WHO) states that around 10% of the current world population is above 65 years. As per the global statistics, India is one of the rapidly aging countries with the Census report of 2011 showing that we have nearly 104 million older adults. Their number is increasing due to multitude of factors like increased birth rates, decreased death rates, improved healthcare delivery enhancing the life expectancy, and better access and control of the diseases.
With the growth of the country’s population, we are also observing more individuals reporting cognitive concerns on a mild to severe level. One of the major one being Alzheimer’s disease. As the World Alzheimer’s Awareness Month (September) passed by, let’s try to understand the condition and break the stigma around it to lay the foundation of an age and dementia-friendly India and for the achievement of Sustainable Development Goal 3 – Good health & well-being.
What is Alzheimer’s Disease?
Dementia is a progressive disorder that causes brain cells to waste away or degenerate and die leading to certain changes in brain’s structure and function. It leads to deficits in memory and much beyond (thinking, behavior, social skills, judgement, comprehension, speech, direction sense, etc.). Dementia commonly affects people older than 65 years of age, however rarely in genetic conditions, younger people might also be affected.
Alzheimer’s Disease is the most common cause of dementia – accounting for 60-80 percent of dementia cases. It causes a gradual decline in the thinking, behavioral, and social skills with memory loss thereby affecting one’s ability to function independently. The early signs of the disease may be in terms of forgetting the recent events or conversations and difficulties in carrying out day-to-day tasks. The Alzheimer’s and Related Disorders Society of India (ARDSI) reports that 5 of every 100 elderly in the country might be living with dementia.
How to Identify?
When the symptoms are mild, the person with Alzheimer’s disease may be aware that he/she/they are having difficulty with remembering and organizing their thoughts. Usually, a close family member or friend may notice the early change. With the gradual brain changes, they develop trouble with the following:
1. Memory loss: All of us have occasional memory lapses where it is normal to lose track of the name of an acquaintance or where one had put the keys or documents. But the memory loss occurring in Alzheimer’s disease persists and worsens with the difficulty in functioning at work or home. People with Alzheimer’s may:
- Repeat the statements and questions over and over
- Forget the conversations, important events, appointments or not remember them later (clue related recall might be present in early stages)
- Routinely misplace one’s possessions and may put them in illogical locations
- Get lost in familiar places
- Slowly forget the names of the family members and regularly used objects
- Searching or have trouble in finding the right words to identify objects, express one’s thoughts, or to take part in conversations.
2. Thinking and reasoning: Persons with Alzheimer’s find it:
- Difficult to concentrate and think, in specific about the abstract concepts like numbers.
- Multitasking becomes extremely difficult
- Difficulty in managing finances, paying bills on time, etc.
- Inability to recognize and deal with numbers.
3. Making judgments and decisions: People with Alzheimer’s Disease find it difficult to make reasonable decisions and judgments wherein the person is noticed to make:
- Poor or non-typical choices in social interactions.
- Wearing clothes which are inappropriate to the weather/situation
- Difficulty in responding effectively to everyday concerns like burnt food or an unexpected driving situation.
4. Planning and performing familiar tasks: Those affected with Alzheimer’s disease find it difficult to do the routine activities which require structured and sequential steps:
- Planning, cooking a meal, or playing a favorite game
- Forgetting to perform basic tasks such as dressing ad bathing
5. Changes in personality and behavior: The changes in the brain affect the mood and behavior in Persons with Alzheimer ’s disease where the problems may include:
- Apathy (lack of interest, enthusiasm, and/or concern)
- Social withdrawal
- Constant change in Mood
- Difficulty in trusting others
- Irritability, anger, and aggressiveness
- Changes in sleeping habits – Reduced sleep or increased sleep
- Wandering behavior
- Loss of inhibitions
- Delusion – believing something strongly which is not true in the real world like someone has stolen something etc.
6. Preserved skills: Many significant skills that have been preserved for a fairly long period worsen with time. These include:
- Reding or listening to books
- Telling stories and reminiscing
- Listening to music
- Doing crafts etc.
In summary, the signs and symptoms as memory loss, disruption of daily life, challenges in planning or solving problems, difficulty in completing familiar tasks, confusion with time or place, trouble understanding visual images and spatial relationships, trouble with new words in speaking or writing, misplacing or losing things, decreased or poor judgment, withdrawal from social or occupational events and changes in mood and personality, occur gradually with time.
- It is important to understand that all the above-mentioned symptoms do not occur together but might appear in a sequential fashion.
How to diagnose?
There is no single diagnostic test to determine and diagnose Alzheimer’s disease. It is a multidisciplinary set of physicians composed of neurologists, geriatric psychiatrists, social workers, and neuropsychologists who use a variety of approaches and assessments to help make a diagnosis. These include detailed medical history, mental status examinations, general and neurological tests, brain imaging (CT/MRI scan of brain), psychosocial assessments, and neuropsychological assessments.
Clinical assessment by a qualified physician is the best approach.
What Causes Alzheimer’s Disease?
Research so far states that it might be caused by a combination of genetic, lifestyle, and environmental factors that affect the brain over time. The exact causes are not fully understood, but at its core, the problems are with the brain proteins which fail to function normally resulting in disruption of the brain cells and unleashing a series of toxic events. Neurons get damaged, connections are lost, and results in death. Damage starts at the brain region controlling memory resulting in loss of neurons in other regions of the brain resulting in the late stage where the brain has shrunk significantly. Researchers have focused on the role of two proteins majorly:
- Plaques: Beta-amyloid is a leftover fragment of a larger protein. These fragments constitute a cluster which appears to have a toxic effect on neurons and disrupts the cell-to-cell communication. The cluster forms larger deposits which are called plagues.
- Tangles: Tau proteins play a significant role in neuron’s internal support and transportation of nutrients. When a person develops Alzheimer’s Disease, these tau proteins change shape and look like tangles that disrupt the transport system and are toxic to cells.
Beyond these ‘technical’ terms there is NO one definite cause. Also, it is NOT directly heritable like genetic diseases such as Thalassemia or Hemophilia. Various factors work together to cause the illness and why one particular person gets affected with this disease at some time point is yet to be definitively known.
Prevention and Management
There is no medicine to reverse the process of ‘decline’ in brain functions. However, with appropriate treatment this process can be delayed and slowed for months to years. Also, the behavioral problems (as discussed before) can be reduced with medicines.
The additional medical problems need proper management.
Understanding the perspectives of people affected with the illness, respecting their wishes and autonomy, and helping them stay active and engaged are probably as important as the medical treatment.
In the absence of a definitive ‘cure’, one needs to be aware of the preventive methods. The following chart gives an idea of the risk factors that can be modified.
- Traumatic Brain Injury
- Social Isolation
- Physical Inactivity
- Air pollution
EARLY LIFE (7%) MIDDLE LIFE (15%) LATER LIFE (18%)
So, what can be done:
(PREVENTION IS ALWAYS BETTER THAN CURE)
Treat hearing/vision impairment
- Maintain social contacts
- Engage in ‘brain activity’ (any form of activity or hobby that you enjoy): Stay ACTIVE
Increased and maintained cognition
Reduced neuropathological damage
- Minimize Diabetes
- Treat Hypertension
- Prevent head injury
- Stop smoking
- Reduce air pollution
- Reduce midlife obesity
- Engage in frequent exercise
- Reduce occurrence of depression (seek help if present)
- Avoid excessive alcohol intake
PREVENT ALZHEIMER’S DISEASE
Break the Stigma:
Persons living with Alzheimer’s Disease and their caregivers often face significant stigma. These individuals often report being misunderstood due to the poor awareness among the public thereby believing one’s myths and misconceptions around the condition.
It is important to break the stigma as it prevents individuals from:
• Seeking medical treatment and care when symptoms are present
• Receiving early diagnosis and hence early treatment
• Enjoying their right to their quality of life possible
• Future planning
• Availing and accessing the available treatments
• Developing a support system for themselves
• Participating in researches for the improved care and treatment
Persons who have Alzheimer’s Disease and their carers often state that they have lost friendships, people have withdrawn from their lives, feelings of abandonment, and refusal of believing one’s diagnosis by the near and dear ones. Change in relationships with hiding about the condition, non-participation, or invitation to gatherings by the friends and family with the change of roles in the family have also been reported.
To overcome the stigma, the Alzheimer’s Association (AA) recommend five major strategies:
1. Be open and direct – Engage others; discuss about the needs for prevention, better treatment, and the eventual cure.
2. Communicate the facts – Sharing of accurate and scientific information is the key to breaking the myths and misconceptions. Provide them with credible inks, online content, and offer information to help people better understand the condition.
3. Seek support and stay connected – It is extremely important to be part of meaningful relationships and activities which could be with friends, family, or a support group. The point of being supported by a proper network is critical to stay engaged.
4. Do not be discouraged – Denial of the condition is not healthy or a cure! If individuals think Alzheimer’s disease is a part of normal aging, consider it as an opportunity to educate them. Aging is different from having an ILLNESS!
5. Be part of the solution – As a person living with the condition or living with a person who has the condition, your voice is the most powerful voice. You can help to raise awareness, end the stigma, and advocate for increasing the support and research around Alzheimer’s Disease.
Any form of media forms a vital role in fighting the stigma associated with this illness, along with the physicians and the people affected themselves.
As much as we provide care for the Persons living with Alzheimer’s Disease, we also need to focus on their families in terms of self-care and self-management. It is not an easy job, but might often lead to frustration, burnout and mental health issues in them. They need adequate support and counselling too. A collective understanding, awareness, empathy, and responsibility can enable a compassionate approach for those affected with Alzheimer’s Disease and their families, helping us to establish a dementia-inclusive society for a civilized world.
Ms Vasundharaa S Nair is a PhD Scholar, Department of Psychiatric Social Work (PSW), NIMHANS, Bengaluru
Dr Debanjan Banerjee is a Psychiatrist associated with Geriatric Services Unit of NIMHANS, Bengaluru.
Disclaimer: The opinions expressed in this article are the personal opinion of the author/authors. The facts and opinions appearing in the article do not reflect the views of News Sense and News Sense does not assume any responsibility or liability for the same.