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Living with Alzheimer's Disease | World Alzheimer's Day
15 Min Read
Table of contents
Table of contents
Introduction
Imagine sitting in front of a loved one, recalling old memories and having a good time, only to see confusion set in their eyes. This is the heartbreaking reality of people who have Alzheimer's disease and their families. Every year on the 21st of September, people across the globe come together to raise awareness about Alzheimer’s. It is crucial for us to understand and empathise with the difficulties faced by those suffering from Alzheimer's disease and dementia. This September 2024, World Alzheimer's Day, centres around the theme 'Time to act on dementia, Time to act on Alzheimer's'. This progressive disease presents individuals with daily challenges in many aspects - cognitively, socially, emotionally, and functionally. Which is why Alzheimer's disease is also referred to as the memory thief or the cleverest thief. According to WHO, more than 55 million people have dementia worldwide, over 60% of whom live in low-and middle-income countries. Every year, there are nearly 10 million new cases. Despite the growing concern for the disease, there are a few misconceptions about it: Memory loss is not a normal part of ageing Only people in their 70s and older develop Alzheimer's disease People with Alzheimer’s can’t lead meaningful lives There’s nothing you can do once diagnosed Dementia and Alzheimer's disease are one and the same With the number of myths and stereotypes that surround Alzheimer’s Disease, it becomes vital to raise awareness and educate ourselves on the complexities of the disease. By understanding early signs and getting a timely diagnosis, it is possible to slow down the progression of the disease and keep our loved ones as comfortable and happy. Keeping this in mind, let us learn and understand this disease that impacts millions of families a little better.
Understanding Alzheimer's Disease
Alzheimer's disease is a complex neurological disorder that has various definitions: According to Pubmed, Alzheimer's disease (AD), dementia refers to a particular onset and course of cognitive and functional decline associated with age together with particular neuropathology. Dementia refers to conditions that lead to impaired memory, thinking, reasoning, and behaviour; Alzheimer’s is just one type of dementia. Alzheimer's disease is the most common form of dementia and may contribute to 60–70% of cases globally. Another simple way to define this disease would be that Alzheimer’s disease is a brain disorder that slowly disrupts the brain’s memory and thinking skills. This can lead to the individual losing the ability to carry out simple tasks, leading to further destruction among the brain cells. This disease is named after Dr. Alois Alzheimer, who in 1906, found changes in the brain tissue of a woman who had died of an unusual mental illness. He found unusual and unpredictable behaviour in the patient during her time of illness. A healthy human brain contains tens of billions of neurons - these specialised cells process and transmit information via electrical and chemical signals. Messages between different parts of the brain are sent and received from the muscles and organs of the body. The brain typically shrinks to a certain degree in healthy ageing, but surprisingly, does not lose neurons in large numbers. However, in the case of Alzheimer’s Disease, damage is widespread, as many neurons stop functioning properly, lose connections with other neurons, and eventually die. Alzheimer’s disrupts processes vital to neurons and their networks, including communication, metabolism, and repair. At first, Alzheimer’s usually damages the connections among neurons in parts of the brain involved in memory, including the entorhinal cortex and hippocampus. It later affects areas in the cerebral cortex responsible for language, reasoning, and social behaviour. Eventually, many other areas of the brain and surrounding neurons are damaged and stop working normally. Over time, a person with Alzheimer’s gradually loses their ability to live and function independently, making this disease fatal.Definition
How does it affect the brain?
Types
The two major categories of classifying Alzheimer's disease are based on the onset of the disease and the genetic factor related to it. (a) Early Onset Alzheimer's Age of Onset - Before 65 (usually starting between 30-60) Frequency - Rare type of Alzheimer's disease(5-10% of cases) Genetic Link - Often linked to mutations in genetics Symptoms - Memory loss, confusion, language problems Progression Speed - Faster progression compared to late-onset and rapid cognitive decline (b) Late-Onset Alzheimer’s Age of Onset - After 65 Frequency - Most common form of Alzheimer's disease Genetic Link - Associated with certain genes, but not guaranteed Symptoms - Gradual cognitive decline, memory issues, difficulty performing tasks, language problems Progression Speed - Gradual decline in functioning (c) Familial Alzheimer’s Disease (FAD) Age of Onset - Varies (can be early or late) Frequency - A very rare form of Alzheimer's disease (<1% of cases) Genetic Link - Inherited genetic mutations are a key characteristic of this type Symptoms - Similar to early-onset but strongly linked to family history Progression Speed - The symptoms can set in earlier and rapid progression is also found among those diagnosed with the disease There are other types of Alzheimer's disease which can affect individuals. Atypical cases tend to affect different brain areas first (not memory-related alone), leading to varying patterns of cognitive impairment. This is where they differ from typical Alzheimer's cases.
Stages of Alzheimer's
While forgetting a few things can be considered age-related, any serious memory loss or memory problems could arise due to Alzheimer’s or dementia and will need immediate attention. Alzheimer’s disease symptoms progress slowly and it can be typically found in three broad stages: early, middle, and late. Since Alzheimer’s affects people in different ways, each person may experience it differently. To support individuals suffering from symptoms of Alzheimer’s disease and aid in treatment, it is important to be aware of the different stages and how it can impact their loved ones. Stage - Before symptoms appear, changes in the brain may be there years before. Symptoms - There is no noticeable cognitive decline, but on inspection, there might be noticeable signs in the brain. Duration - Can affect the individual for many years. 2. Mild Cognitive Impairment (MIC) Stage - Early cognitive impairment might be present, but they have not begun to affect everyday life yet. Symptoms - Mild memory problems, such as forgetting recent events or appointments, and difficulty with problem-solving, planning, or finding words. These symptoms are often noticed by people around the individual, but the individual itself may be unaware. Duration - It can differ from one person to another. Also, some people with MCI may not progress to Alzheimer’s. 3. Mild (Early-Stage) Alzheimer's Disease Stage - The first stage after the official diagnosis of Alzheimer’s. Symptoms - Increased memory loss, difficulty in forming words and remembering names, misplacing objects, poor judgement, taking longer to complete everyday tasks, repeating questions, and changes in temperament and mood, might begin to need assistance. Duration -Typically 2-4 years 4. Moderate (Middle-Stage) Alzheimer's Disease Stage - There is significant cognitive decline, which affects daily activities and personal care. Symptoms - Including the above symptoms, there could be more need for assistance and the individual may often forget where they are or get lost. Duration - Typically, it can last 2-10 years 5. Severe (Late-Stage) Alzheimer's Disease Stage - A rapid and profound cognitive decline is found in this stage. Symptoms - Inability to recognise family and friends, loss or slurring of speech, decline in physical health, extreme dependence on caregivers, etc. Duration - Can last 1-3 years 6. End-Stage Alzheimer's Disease Stage - As the brain tissues shrink, people with this disease can no longer communicate or look after themselves. The last stage tends to have almost 100% dependency. Symptoms - Loss of weight, and loss of most motor skills, patients might be bedridden for years and be completely dependent on their caregivers. Duration - This is usually the shortest stage and it can last for 1-2 years. While there is no known way to prevent Alzheimer's disease, there are things you can do to reduce the risk or delay its onset - such as regular exercise, having a nutritious diet, cutting out alcohol and smoking, managing blood pressure and blood sugar, cognitive training, staying mentally active, etc. Some ideas to keep the mind engaged and active are - To learn a new language Regular social meet-ups Trying new activities or taking up hobbies Reading and writing Learning to play a musical instrument
Treatment
People know that there is no cure for Alzheimer's. However, did you know that there are many ways one can make use of Alzheimer's disease treatment and management? While there is no one particular cure for the disease, there is huge progress in managing the symptoms of the disease. Due to the range and different types of treatment, different things might work for different individuals. Certain medications can manage the symptoms, progress, and reduce the suffering of Alzheimer's. Depending on slow to severe memory loss, medications or drugs are prescribed by doctors. By slowing down the symptoms of Alzheimer’s disease and the stages of Alzheimer's disease, it can provide great relief for both the patient and the caregivers. Due to new-found case studies, medication today can remove certain proteins and elements in the brain that might aggravate the symptoms of Alzheimer's disease. Behavioural problems associated with this condition can be controlled effectively with psychiatric medications and the progress if monitored regularly by a neurologist, can lead to huge improvements. Therapies are highly recommended, even a small puzzle or an interactive game can make a difference. Therapy could include simple solutions as well, such as recording one’s day-to-day activities, journaling one’s life, talking to a qualified person about the challenges faced, and joining support groups. Every day, we learn more about how to prevent Alzheimer's. Ongoing research into Alzheimer's disease is exploring new drugs, therapies, and intervention strategies to benefit patients. Clinical trials and observational studies, also focus on underlying disease processes, how the disease progressed over time, possibilities of positive intervention, cognitive training, diet restrictions, and physical activity. By participating in clinical trials, patients may be eligible to access experimental treatments and receive more aid from the world of science. These trials also help individuals with Alzheimer's disease symptoms to find support groups, learn their condition better, and get additional resources that might make their lives easier.Medication and Drugs:
Therapy and medical professional involvement:
Research and Trials:
Coping Strategies
Living with Alzheimer's disease is overwhelming for the individual affected by it as well as their dear ones. With changing difficulties and challenges as the disease worsens, individuals may be in increasing need of help with every stage of Alzheimer's disease. Educating and providing resources to caregivers is most important as they may struggle with the different stages as the disease progresses - we learn more about this further in the blog. Coping strategies are fundamental to the well-being of individuals with Alzheimer's disease, to help them find meaning and lead a fulfilling life. Studies have found that when the right coping strategies are introduced, it can have a profound effect on depressive and anxiety symptoms of the individual with Alzheimer's disease and reduce the burden of caregivers greatly. Coping strategies are broadly classified into: preserving the person's identity normalisation of the situation, and participating in the society This is one of the primary symptoms of Alzheimer’s disease. Forgetting events, names, faces, and places are all part of the symptoms. This could be dangerous and difficult for the people around, as individuals are often unable to anticipate or avoid dangerous situations. Coping mechanisms for memory loss: Use reminders: Setting alarms or jotting down notes on your loved ones phone can help them keep track of their daily activities. Consider placing a calendar in an easily accessible spot at home to help them remember important tasks or dates. Create a routine: People with Alzheimer’s can benefit from a structured daily routine. It helps them focus on activities that bring them joy, which in turn can improve their mood. A structured routine can also reduce the number of distractions, which can help them focus on the task at hand. Seek support: Talking to people around us can also help bring clarity to the situation and provide loved ones with the support they need. Encouraging Alzheimer's patients to mingle and take part in social activities can help stimulate cognitive function, which may slow down the progression of the symptoms. Finding the right words, and phrases and putting together a complete sentence, and understanding others can become difficult as one progresses from one stage of Alzheimer's disease to the next. Coping mechanism for communication difficulties: Keep communication and language as simple as possible. Include non-verbal communication wherever needed or if the individual is severely confused. Avoid distractions when they are focusing on simple tasks. Reducing background music and noisy equipment running at the back can help to create a calmer environment promoting focus. With the onset of Alzheimer’s disease, heavy mood changes can be found in individuals, from anxiety and increased irritability to depression and isolation. Coping mechanism for behavioural changes: Seeking professional help should be the most important step here, as a medical professional can recommend therapy or medication to help bring drastic behavioural changes under control. Creating a safe and calm environment that is reassuring can reduce anxiety and stress levels to a great degree. A main concern with Alzheimer’s is that it leads to dependence, as one is unable to perform simple, everyday tasks. Forgetting daily routines, needing help with complex tasks (having medicine, finances, cooking, etc.), being unable to take care of the house, or even maintaining personal hygiene are all reasons for dependency. Coping mechanism: Breaking down everyday activities into simple tasks and using visual aids and cues to help individuals understand them can be helpful. Making the tasks easy, simple, and accessible can also be a good idea. For many families, hiring help and assistance as needed is a wise decision, particularly when the caregiver faces challenges, especially in the later stages of care. For most families, hiring help and assistance proves to be helpful, especially in the later stages of care. There is a possibility of individuals wandering and eventually losing their way home when they forget their surroundings. They may also be at a higher risk of accidental falls and fall-related injuries. This makes it crucial for loved ones to monitor such patterns and ensure safety measures are set in place inside the home to prevent any accidents. Interventions, like home-based exercises or safety-interventions, have proven to be effective in preventing falls and fall-related injury, especially in older people. Coping mechanism: Simple practices such as having a lock, camera, or alarm in the house, installing a tracker in their phone, making sure they have a medical bracelet or an ID with them at all times, etc., can be done to keep track of one's location as well. It is a good idea to inform the neighbours of your loved one's health condition and their tendency to wander away. Request them to keep a look-out.
Memory loss and confusion
Communication difficulties
Changes in behaviour and personality
Maintaining a routine
Creating a safe environment
Tips for Caregivers
Caregivers often face several challenges while caring for individuals with Alzheimer’s disease. Some might be exhausted physically and mentally and others might be unaware of how to help and deal with the different stages of Alzheimer's disease. Understanding and educating oneself about the disease is an important long-term strategy to help people affected by it. Taking care of someone with Alzheimer’s disease requires patience, creativity, and a lot of strength. Perhaps one of the most important steps would be to be patient and kind to yourself as well when dealing with such challenges. Here are some tips to help you: Reach out to others, friends, and other family members who can help give you a break from taking care of the caregiving responsibilities, and allow you to take a breather. Asking for medical help as and when needed, or consulting with a doctor when the symptoms change or become worse, can help one cope with this complex disease. Today, there are support groups online and offline to help people overcome the stress of caregiving for patients with Alzheimer's disease. With tried and tested ideas, non-judgemental people to talk to, and emotional support, this can be a huge win on your side. There are many institutions and programs where families can educate themselves on the various stages of Alzheimer’s. These programs also provide coping mechanisms to deal with difficult behaviours and other caregiving challenges that may come up. Prioritising yourself is something that should be done regularly. Activities such as taking a walk, meditating, eating well, and managing stress levels, are all things that one must do, to avoid burnout and stress.
Conclusion
This 21st of September, World Alzheimer's Day, is a day of awareness and recognition! Scientists today continue to unravel the complex nature of our brains, treatments are being approved to slow Alzheimer's in the early stages. Researchers are making big strides in diagnosis, and understanding the fundamentals of the causes of Alzheimer's disease is being prioritised all across the globe. Alzheimer's affects millions of people worldwide, yet myths, misconceptions, and lack of knowledge about its symptoms, progression, and impact on individuals and families continue on a large scale. By taking time to read this blog, you are already playing a vital role by educating yourself and raising awareness around the world. So, do your bit, and do not hesitate to approach a medical professional if you detect the onset of Alzheimer's disease symptoms in your loved one. With the right support and people in your corner, individuals with Alzheimer’s can lead happy and meaningful lives. If you notice any of these symptoms in a family member, friend, or colleague, make sure to consult a professional. . Alzheimer's can be treated and managed, but it can also be prevented and delayed. All you need to do is ask for help.
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