National Alzheimer’s Disease Awareness Month
Most of us know someone who has been impacted by Alzheimer’s disease, whether it’s touched our own family or a friend’s loved ones. Nationally, the month of November is known as Alzheimer’s Disease Awareness Month. Recognizing the need for heightened awareness of this disease, President Ronald Reagan made this designation in 1983. According to the Alzheimer’s Association,1 there were less than two million Americans with Alzheimer’s disease at that time. That number has increased to nearly six million nationally. According to the World Health Organization (WHO),2 roughly 50 million people worldwide live with Alzheimer's disease and other types of dementia.
Whether it’s during November or any other time of the year, understanding Alzheimer’s disease can improve the quality of life for those with previously undiagnosed Alzheimer’s. And that’s what National Alzheimer’s Disease Awareness Month is all about! In this guide to Alzheimer’s Awareness, we’ll cover:
- Defining Alzheimer’s disease
- Important signs and symptoms to look out for
- Current research and treatments for Alzheimer’s
- Ways to get involved in the fight against Alzheimer’s disease
What is Alzheimer’s Disease?
Alzheimer’s disease is a type of dementia, which is a term that describes memory loss symptoms and cognitive decline significant enough to interfere with daily life. Alzheimer’s dementia, the most common type of dementia, accounts for 60 to 80 percent of all cases.3
Although everyone experiences a change in brain function as they age, what occurs with Alzheimer’s disease is not a normal part of aging. Alzheimer’s is a progressive neurodegenerative disease, which means it gets worse over time, and the person affected eventually loses the ability to accomplish daily tasks.
Memory loss, such as frequently forgetting names, words, or new information, is typically one of the first warning signs of Alzheimer’s disease. Although unwanted and frustrating, occasional memory lapses and instances of mild forgetfulness do not mean that a person has Alzheimer’s. One clear distinction for any dementia diagnosis, including Alzheimer’s, is that memory struggles and other symptoms need to be significant enough to impair someone’s ability to accomplish everyday tasks independently. These tasks are often referred to as Instrumental Activities of Daily Living (IADLs). IADLs include things like:
- Using the phone
- Preparing meals
- Using transportation
- Taking medication(s)
- Managing finances.
If someone has memory or cognitive struggles, but these struggles do not clearly impact daily independent living and the tasks above, they may first be diagnosed with mild cognitive impairment (MCI). Generally, mild cognitive impairment (MCI) is the phase between the cognitive decline of normal aging and the more notable decline of dementia. It may also increase the risk of developing Alzheimer’s disease.
At the beginning of Alzheimer’s disease, struggles with memory, communication, and planning may be frequent but mild. As the disease progresses, those diagnosed experience gradual changes in behavior and declines in memory, navigational abilities, and communication. At the moderate stages, impaired judgment and confusion occur more frequently, and behaviors may include wandering, repeated questioning, and suspicion of others. Individuals may need support with self-care and multi-step tasks. At the severe stages, those with Alzheimer’s may become unaware of their environment, lose the ability to carry on a conversation, and require daily assistance with personal needs. After diagnosis, those with Alzheimer’s disease typically live an average of three to ten years but can survive for up to 20 years, depending on other health factors. Official causes of death are often related to falls, infections like pneumonia, or malnutrition, given the impact of Alzheimer’s on the ability to eat and swallow in the more advanced stages of the disease.
Although older adults aged 65 and over are more likely to develop Alzheimer’s disease, a very small percentage of people develop early-onset Alzheimer's disease at a much younger age. Early-onset dementia is mostly hereditary and can occur as early as your thirties, forties, and fifties.
Alzheimer’s Disease Symptoms
Part of Alzheimer’s disease awareness is knowing the symptoms so you can recognize them in a loved one who may be developing Alzheimer’s. Early diagnosis of mild cognitive impairment (MCI) or dementia is key to optimal health management and planning. Symptoms to look out for related to mild cognitive impairment or Alzheimer’s disease include:
- Memory loss – People may forget things they have recently learned, including dates, names of people or things, and details of events. They might ask the same question several times and repeat details or stories.
- Confusion with time or place – Those with Alzheimer’s often lose track of time. It may start with not knowing the day or date and progress to mistaking the month, season, or year. They may forget where they are and how they ended up there, which can lead to getting lost in familiar locations, periods of disorientation, and wandering.
- Trouble planning, organizing, or solving problems – You may notice a loved one taking longer to complete tasks they used to be able to do more quickly. They might also have trouble following directions, especially those with multiple steps. Even more familiar tasks like writing a check, addressing a letter, taking one’s medications, or following known or straightforward recipes become more difficult.
- Communication struggles – People may find it challenging to find the correct words to express ideas. They might blank on common words and phrases and substitute words with similar words, like saying “mom” for “sister” or “pen” for “pencil.”
- Misplacing things and being unable to retrace steps – Those with Alzheimer’s often misplace objects. Although they would have been able to retrace their steps to find what they were looking for in the past, that is no longer the case. Sometimes this leads to accusations of stealing because they can no longer find their belongings.
- Mood and personality changes – Because of the changes occurring in their brain, you may notice significant shifts in mood and personality. They might become confused, agitated, restless, suspicious, worried, and depressed. Sleep changes and sundowning in dementia may also increase the likelihood of these symptoms.
The sooner a diagnosis is made, the sooner someone can work with their medical team to optimize the treatment of physical and mental health conditions. Optimal physical health, regular medical follow-up, socialization, activity, nutrition, and overall well-being can make a big difference in dementia symptoms and progression.
Is There a Cure for Alzheimer’s Disease? What About Studies on Alzheimer’s Disease?
Unfortunately, there are no drugs or treatments that can cure Alzheimer’s disease. No known medications or treatments appear to stop the deterioration and ultimate death of brain cells, which is what makes the disease progress. Current Alzheimer's treatments may temporarily improve symptoms or slow down memory loss and difficulties with thinking and reasoning, or they may attempt to manage the disease's behavioral symptoms.
Medications offered at the mild to moderate stages of Alzheimer’s often seek to prevent the breakdown of brain chemicals important for memory and thinking. At more moderate to severe stages, medications aim to decrease symptoms, focusing on helping people maintain daily function a little longer than they would have otherwise.
Research on Alzheimer’s Disease
There are many different research studies and clinical trials on Alzheimer’s disease. Those with Alzheimer’s disease, caregivers of those with dementia, and healthy volunteers can all participate. Studies with healthy volunteers are particularly useful for exploring preclinical Alzheimer’s disease, with the goal of intervening as early as possible in the disease progression, even before developing cognitive symptoms. All studies have inclusion and exclusion criteria that limit who can participate. If you are interested in participating in research, you can make yourself available to many local and national studies by joining a registry or research trial matching service. Two such services are the Alzheimer Prevention Registry4 and TrialMatch5.
Helping People with Alzheimer’s Disease
Although there is no cure for Alzheimer’s disease, there are things you can do to help a loved one and support them through their difficulties and struggles.
- Have a daily routine – Structure and familiarity help the person know what to expect and alleviate problems with day and time confusion. It can be useful to keep consistent times for daily activities like going to bed and waking up, visitors, medication, and mealtimes. Setting the environment up to cue what time it is can also be helpful, like opening the curtains in the morning or putting quiet music on around bedtime.
- Keep things simple – Aim to speak more slowly about a single topic or present only one idea at a time. Try to use yes/no questions instead of asking them to elaborate or use “don’t you remember” or “tell me about” questions. Also, try to keep the environment simple and calm. Additional noise or glare (like having the television on when trying to communicate) can distract and impact understanding.
- Eye-level and close by conversation – Try to speak close to, facing, and at the eye level of your loved one. Communication can be easier, and connectedness can be stronger when the person with dementia can see your face. Try approaching from the front instead of from behind or the side so that they can see you coming.
- Set them up for success – Aim to involve your loved one with Alzheimer’s in daily activities at a level of independence they are capable of. For example, they may not be able to get dressed or tie their shoes but may be able to put clothes in the laundry or hamper.
- Be reassuring and validating – Some suspicions and fearful behaviors fueled by memory loss may be managed through validation and empathic statements like “you are safe” or “you are loved.” Smile, use touch if it’s alright with the person, make eye contact, and use gestures and other body language to communicate instead of using words.
- Don’t take their behavior personally – A lot of the behaviors you see are caused by the impact of dementia on insight. Sometimes, a person with Alzheimer’s disease may have a better day, which can complicate a loved one's reactions and increase frustration when memory loss or confusion returns. Additionally, individuals with dementia can often sense negative emotions and frustration, amplifying their own feelings and behaviors.
- Try not to correct – It may be useful to leave out the entire truth if correcting the person with dementia may be upsetting. For example, if the person asks when they may see a loved one who died years ago, avoid being confrontational or correcting. Instead, you can say, “they are not here right now” or “I’d like to see that person too.”
Most caregivers find that using some of these approaches helps them communicate and connect to their loved ones with Alzheimer’s.
Alzheimer’s Disease Awareness Month Activities
During Alzheimer’s Disease Awareness Month, organizations like the Alzheimer’s Association work to educate the public about the disease. They discuss some of the areas mentioned above, symptoms, treatments, and coping.
In the months leading up to November, there are often many “memory walks” to raise awareness about the disease and raise money for research. You can find a walk near you6 (many are now occurring virtually due to the pandemic) or find out more about how you can get involved.
Throughout the year, donations for Alzheimer’s research and programming are always welcomed. Organizations are also always looking for volunteers or friendly visitors to work with those with Alzheimer’s. If interested, you can look in your area to find out where you can volunteer your time.
Many people opt to take part in the National Memory Screening Program7. This free program is available nationwide and provides confidential memory screenings to anyone interested. During the coronavirus pandemic, these screenings happen regularly and virtually. Participation in this program is an excellent way to see if you or a loved one is experiencing memory problems. Speaking to your primary care physician or medical team is also very helpful, and they may be able to do a memory screen during your office visit.
During November and throughout the year, being aware of the signs and symptoms of Alzheimer’s disease and joining the fight against it can make a real impact on your loved ones and community.