Alzheimer’s disease is the most common type of dementia. According to the Alzheimer’s Association, the disease currently affects over 6 million Americans and is expected to increase to nearly 13 million by 2050.
Even if this prevalence implies that most people are aware of the disease in general, many people have harmful misconceptions about what a diagnosis means. Stigma not only causes people living with Alzheimer’s to feel misunderstood and isolated, but it may also contribute to a lower quality of life, a faster progression of symptoms, and even lower rates of government research funding.
If a loved one has been diagnosed with Alzheimer’s disease, or if you suspect they are developing symptoms, it is critical for both of you to understand that people with Alzheimer’s can live full, satisfying lives for many years after their diagnosis. Life with Alzheimer’s is still meaningful, especially with the help of friends and loved ones, healthcare providers, and family caregivers who can provide live-in care Alzheimer’s.
Understanding Stigma and Its Negative Consequences
The fear and stigma associated with Alzheimer’s disease have a wide range of negative consequences for those who receive a diagnosis. It is common for people experiencing Alzheimer’s symptoms to put off seeking medical advice or starting new treatments. Many people will put off planning ahead of the disease’s progression because they are embarrassed or afraid of how their cognitive functioning will change over time.
One of the most serious concerns for people diagnosed with Alzheimer’s disease is the stigma that may cause family or friends to withdraw from their lives, dismiss their symptoms as normal aging, or avoid any discussion of the condition entirely.
“I believe the first and most significant negative impact of the various stigmas – anger, violence, cognitive decline, inability to remember – is that people with the disease are, in a sense, condemned as soon as they are diagnosed,” says Sarah Johnson, a geriatric RN and the Health Ambassador for Family Assets, an eldercare and aging resource for seniors and caregivers. “People forget that Alzheimer’s is not only a progressive disease, but one that we are learning more about with each passing year, including how to delay its effects and provide a high quality of life for those living with it.”
Because the disease’s final stages are so feared, an Alzheimer’s diagnosis can have a negative impact on relationships, leading to isolation and a lack of emotional support. According to Dr. Karim, the social impact of Alzheimer’s disease stigma can be detrimental to a person’s mental health.
“Friends frequently no longer consult with them directly, instead communicating through family members or caregivers. Loss of contact with loved ones, as well as exclusion from important conversations and day-to-day activities, can all have a negative impact on a person’s mental health in addition to their Alzheimer’s diagnosis. In the early stages of a diagnosis, it is critical to establish a strong support network with open communication in order to give the diagnosed person more autonomy in decision making. It alleviates feelings of helplessness and frustration at not being heard.”
How to Help an Alzheimer’s Patient Live a More Fulfilling Life
Caring for someone who has Alzheimer’s disease is both physically and emotionally demanding.
“Not all caregiving is the same,” says Nicole Brackett, LPN, a Right Choice professional care staff trainer. “Anyone caring for a loved one with Alzheimer’s disease will face unique challenges, many of which will change as the disease progresses.
“Not everyone requires the same types of assistance,” she explains. “Symptoms differ from person to person, as does the length of time they have the disease.”
Family caregivers are intimately familiar with their loved ones and understand what needs to be done to improve their quality of life, overall health, and well-being. Your relationship with a loved one suffering from Alzheimer’s disease can play an important role in assisting them to live a more fulfilling life.
Brackett suggests participating in activities that your loved one enjoys with them, such as attending church services, visiting museums, or shopping at the market. “Having a thorough understanding of the person’s likes and passions allows for more targeted and personal engagement. The goal of these interactions is to increase understanding and approach each situation with solutions that respect the meaning behind the person’s expression or reaction.”
Leslie Eckford recommends taking a loved one with you while you run errands or go for a drive. “Everyone should be able to see and be a part of the world around them, rather than being confined within four walls. It’s like hitting the reset button for all of us.”
Another enjoyable activity for many people with Alzheimer’s disease is going through photo albums, which allows them to talk about family photos, favorite vacation spots, and other memories. “Even if a person becomes less verbal,” Eckford explains, “they can enjoy seeing familiar faces who were a part of their life.”
However, regardless of how much you love the person you’re caring for or how prepared you feel to provide the support your loved one requires, it’s common for caregivers to experience anticipatory grief as well as frustration, fatigue, and even burnout.
Routines, according to LeBlanc, are critical for people living with Alzheimer’s disease. “Because of their short-term memory loss, it is critical to keep everything in patterns in order for them to feel safe and comfortable. Every day, breakfast, lunch, and dinner should be scheduled at the same time. The same is true for bathing. If a gentleman has shaved before showering every day of his life, make certain that this is not reversed on him. Keeping a consistent routine will be extremely beneficial to both of you.”
Caregivers can also help their care recipient maintain their social activities. “This may be difficult during the COVID-19 pandemic, but there are online support options,” says LeBlanc. “One is Dementia Mentors. Through online discussions, loved ones will be able to feel supported and uplifted, while caregivers will be able to take a mental and physical break for the allotted time.”
Local support groups are another excellent resource for caregivers of Alzheimer’s patients.
There is no cure for Alzheimer’s disease, but research is progressing. The more we learn about this disease, the better the treatments will become and the easier it will be for those suffering from it to manage their symptoms. Research is also essential for increasing awareness of the realities of Alzheimer’s disease and eradicating stigma. People with Alzheimer’s disease are frequently treated with the same fear and avoidance as the disease itself. However, your loved one’s illness does not have to become their identity. They can continue to live full, active lives and experience joy and fulfillment for years to come with early diagnosis and treatment, as well as the love and support of family and friends.