September is World Alzheimer’s Month and World Alzheimer’s Day is September 21. What is the purpose of dedicating a day or a month to Alzheimer’s? It’s to raise awareness and to challenge the stigma. We will explore both in this blog. But first, let’s talk about the numbers and why dedicating a day or a month is so vital for living well with dementia.
Currently there are over 50 million people globally and more than 6 million Americans living with Alzheimer’s disease. Alzheimer’s disease is the most common form of dementia, and one of the leading causes of death in the United States.
The number of people impacted by Alzheimer’s is expected to grow exponentially over the next few decades as the baby boomers, the largest portion of the American population, grows older.
Based upon US Census Bureau projections the 80-plus population will increase by 500,000 in 2025, and by 1 million in 2027. Along with this growth in the older adult population we anticipate seeing exponential growth in Alzheimer’s disease and other causes of dementia.
Raise Awareness: Understanding Alzheimer’s Signs and Symptoms
It can be difficult to discern the symptoms of Alzheimer’s/dementia from cognitive changes associated with normal aging; however, it’s something everyone should know. To be clear, dementia is not a normal part of aging. Alzheimer’s is a disease that people of all ages can experience but is more prevalent in those 65 and older.
Normal cognitive changes related to aging may include a slight decline in memory, speed of processing, or attention. But a key differentiator is these changes related to aging don’t have a significant impact on one’s ability to perform daily activities independently. For example, someone may occasionally forget a word or a name, but they can routinely recall the names of those who are familiar to them. They may occasionally forget where they placed something or what they went into a room to retrieve, but they don’t routinely forget where they parked their car, or they don’t routinely forget what they went to the store to purchase.
Bottom line is, as a rule of thumb, Alzheimer’s disease interferes with a person’s ability to engage safely and independently in daily life activities whereas normal aging doesn’t.
Watching for the subtle, early signs of dementia is important because Alzheimer’s often comes on gradually. What to watch for:
- A decline in memory, reasoning, attention, problem solving, judgement, time management, or new learning.
- These cognitive changes impair safe and independent functioning. Therefore, you will observe a decline in instrumental activities of daily living such as driving, cooking, money management, medication management, and scheduling and keeping appointments.
If you routinely observe these signs and symptoms, I highly recommend a discussion with their general practitioner. If you are in a role that performs cognitive screens and assessments, this is the time to administer. The physician or other medical professional, such as an Occupational Therapist, may perform brief cognitive screenings/tests. Basic medical tests and blood work may be ordered to rule out common causes of dementia symptoms that may be reversible.
If cognitive decline is to a degree that it impairs functioning and there is no probable reason for these changes, it is highly advisable to go on for further testing via a specialist, such as a neurologist. It is this level of specialization that is necessary to help determine the root cause of the symptoms (e.g., Alzheimer’s disease) and to implement a treatment plan.
Challenge the Stigma: The Greatest Barrier to Understanding Alzheimer’s
Unfortunately, there is much stigma associated with dementia, and the fear of Alzheimer’s disease is widespread. This stigma and fear can prevent access to the much-needed care, support, and specialists. For example, the pervasive belief is an Alzheimer’s disease diagnosis is a sentence of suffering. So, we often see people discounting the symptoms instead of seeking assessment and treatment. While it is true that currently there is no cure for Alzheimer’s disease, holistic treatment can help both the person living with dementia and their loved ones.
Treatment can slow the progression and optimize both quality of life and successful engagement in meaningful activities. Alzheimer’s disease (and other diseases that cause dementia) impacts more than the person who is diagnosed. It can take a toll on family and loved ones too. Holistic treatment should always include educating and supporting loved ones.
We can reduce the stigma if we change the way we think about Alzheimer’s disease. Like many diseases of aging, decline is inevitable, but it doesn’t mean all abilities are lost.
A person can coexist successfully with Alzheimer’s/dementia, but the catalyst is to be able to adapt and accept.
Adapt means we help the individual to do the things they are no longer capable of, while encouraging and fostering the use of the abilities that remain. We adapt our communication, our approach, and the activity to meet the person where they are in the dementia stages. This helps the person stay engaged at their best ability in meaningful activities. This has tremendous physical, cognitive, and emotional benefits, while also reducing the burden on the care partner (e.g., family).
Accept means we make decisions based on the reality of the situation today, and the actions we take are in keeping with that reality. Denial is common, especially in the earliest of stages. Denial can be a great coping mechanism for a while, but it can also prevent the person from gaining the medical interventions, care, and emotional support required to be able to live well with dementia.
Suggestions for Living Well with Dementia
Don't ignore signs and symptoms.
Whatever your role (family member/loved one or health care professional), be vigilant about watching for the symptoms. Pursue the next steps of screening and assessment with the goal of providing the holistic treatment the person diagnosed and their loved ones need.
Don't believe suffering is inevitable.
Do your part to reduce this stigma. Quality of life with dementia is possible when we provide person-centered, cognitively supportive care and we envelop families/loved ones with the help and support they need.
Don't go it alone.
Families and loved ones, this one is for you. Don’t “suffer alone in silence” and take it all upon yourself. Talk to those you trust, access the health care and support systems available, and remember to put your own oxygen mask on first. By engaging your personal network and professional services you help your loved one who is living with dementia, and you help yourself to get the time you need to take care of yourself. It matters. You matter.
Our vision is to cultivate a Dementia Capable Society—a world in which those living with dementia, their care partners and loved ones are supported and can thrive. With the staggering rise in dementia, this has never felt more important. I call on all health care professionals and providers who work with seniors to do what it takes to become dementia specialized, as appropriate for your role.
Society has never needed you more.
Kim Warchol, OTR/L, is the founder and President of Dementia Care Specialists at Crisis Prevention Institute.