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Understanding Alzheimer’s Stigma and Quality of Life after a Diagnosis: A Guide for Family Caregivers

Alzheimer’s is the most common form of dementia. The disease currently affects over 6 million Americans, a number that is expected to rise to nearly 13 million by 2050 according to the Alzheimer’s Association.

Even if this prevalence means that most people are familiar with the disease in a general sense, many harbor harmful misconceptions about what a diagnosis really means. Not only does stigma result in people living with Alzheimer’s feeling misunderstood and isolated, it may contribute to a lower quality of life, a faster progression of symptoms, and even lower rates of funding for government research.

If a loved one has been diagnosed with Alzheimer’s disease, or if you suspect that they might be developing symptoms, it is critical for both of you to know that people with Alzheimer’s can live full, satisfying lives for many years after a diagnosis. Life with Alzheimer’s is still worthwhile, especially with support from friends and loved ones, healthcare providers, and family caregivers.

Understanding the Stigma and Its Negative Impacts

The fear and stigma surrounding Alzheimer’s disease has many negative impacts for those who receive a diagnosis. It’s common for people experiencing Alzheimer’s symptoms to delay seeking medical advice, or delay receiving new treatments prescribed to them. Many will put off planning in advance of the disease progression due to a sense of shame or fear that prevents them from acknowledging how their cognitive functioning will change over time.

Dr. Raheel Karim, a Consultant Psychiatrist for Pall Mall Medical, emphasizes the importance of encouraging your loved one to speak to their healthcare provider as soon as possible if memory loss begins impacting familiar daily tasks. Delaying diagnosis and treatment could have negative impacts on their health and well-being that could have been avoided.

“A fear of discrimination, loss of autonomy and exclusion can prevent those with symptoms from seeking a professional diagnosis. Shouldering health concerns on your own can be a cause of great stress and anxiety – Alzheimer’s is no exception. A timely diagnosis allows for the patient and their family to adjust, process the diagnosis, and access support,” says Dr. Karim.

Some of the greatest concerns for people diagnosed with Alzheimer’s disease are the stigma that may lead to family or friends withdrawing from their lives, dismissing their symptoms as typical aging, or avoiding any discussion of the condition altogether.

“I think the first and primary negative impact of the various stigmas – anger, violence, cognitive decline, an 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 progressive, but something we better understand with each passing year, including how to delay its effects and provide a high quality of life for those living with it.”

Because the final stages of the disease are so feared, an Alzheimer’s diagnosis can have a negative impact on relationships, which can lead to isolation and a lack of emotional support. The social impact of the stigma around Alzheimer’s disease can be damaging to a person’s mental health, Dr. Karim explains.

“Friends often no longer consult with them directly, communicating instead through family members or caregivers. Losing touch with loved ones and being excluded from important conversations and day-to-day activities can all have a detrimental effect on a person’s mental health beyond their Alzheimer’s diagnosis. It’s important to establish a strong support network with open communication in the early stages of a diagnosis, to give the diagnosed person greater autonomy in terms of decision making. It helps prevent feelings of helplessness, and the frustration of not being heard.”

Sarah Johnson is in agreement.

“An Alzheimer’s diagnosis can have a negative effect on a person’s relationships far sooner than it needs to, with some friends and family distancing themselves in advance of any meaningful cognitive decline,” she says. “This can leave the person with Alzheimer’s without a strong emotional support network to help them come to terms and deal with their disease.”

Early Intervention for Alzheimer’s, and Factors Contributing to a Higher Quality of Life

If a loved one begins to experience significant levels of memory loss or disorientation that may indicate the onset of Alzheimer’s disease, it is highly encouraged to consult a healthcare provider. Receiving a diagnosis and beginning treatment in the early stages of the disease can allow people with Alzheimer’s to enjoy life for years after being diagnosed. Early diagnosis allows patients access to treatments that can help to slow the progression of the disease and better manage symptoms.

“It’s widely and wrongly perceived that people living with Alzheimer’s cannot have a good quality of life – but this doesn’t have to be the case if you seek early intervention and the right support,” says Dr. Karim. “Delaying intervention allows symptoms to worsen before a treatment or a care plan is put in place.”

Aside from early diagnosis and intervention, maintaining an active lifestyle and seeking opportunities to build and maintain interpersonal relationships can have a positive impact on well-being.

Leslie Eckford, a Licensed Clinical Social Worker specializing in mental health and aging and co-author of three books on the subject, suggests that loved ones remain physically active for as long as possible. “Some of the best advice I was given in caring for my own mother with Alzheimer’s was from her neurologist. He said to make sure that she continues to do the physical tasks that she normally would do for as long as she can,” Eckford says. “Muscle memory helps people retain activity that is part of being human. This means setting the table, brushing her own hair, opening a book.”

Eckford stresses that exercise is essential for people with dementia, providing both physical and emotional benefits. It’s important to note that staying active isn’t limited to traditional exercise activities such as running or sports. Any physical activity that your loved one enjoys can have a big impact on their well-being – even chores such as vacuuming.

And remaining connected with others is just as important, Eckford says. “There’s a hard truth with dementia. As the disease advances, close relationships are in shorter supply. Their social world gets smaller,” she explains. “If possible, do what you can to expand opportunities to see and relate to people. A senior day center or even an online senior center class can be helpful. It allows some easy exchange of greetings and seeing new faces.”

Human connection doesn’t have to be limited to face-to-face interactions. Any opportunity to connect virtually with friends and family who can’t be there in person should be encouraged.

“Zoom meetings can be tiring for many of us. But video calls are a source of human connection,” says Eckford “They are most successful if you plan for ‘tech assistance.’ Recruit a family member or staff person to be on hand. This limits the possibility of frustration.”

Eckford also suggests dabbling in art or music, which can allow people with Alzheimer’s to express emotions that may otherwise remain hidden. Dancing while standing or sitting in a chair might be a good form of exercise, as well.

One inspiring story of the potential for artistic expression to improve the lives if those with Alzheimer’s comes from the internationally renowned singer Tony Bennett. In February of 2021, 94-year-old Bennett took to Twitter to publicly announce his diagnosis. “Life is a gift,” he said. “Even with Alzheimer’s.”

Bennett first began experiencing symptoms of the disease in 2015 and was diagnosed in 2016. Between 2018 and 2020, he recorded an album with Lady Gaga as a follow-up to their chart-topping 2014 collaboration, “Tony Bennett & Lady Gaga: Cheek to Cheek.” Bennett’s family noted that even as his ability to recognize people and objects deteriorated, his stage performances were unaffected. Up until the pandemic shutdowns of March 2020, Bennett was still doing 90-minute sets, lighting up when his name was announced and performing each song as he would have at any other time of his life.

Tony Bennett’s story is proof that people living with Alzheimer’s can and should continue to pursue their passions, musical or otherwise. What mattered to your loved one before they began experiencing Alzheimer’s symptoms still matters to them now. Not only will continuing those pursuits bring joy into their lives, it will help them associate their identity with what they love more than the ravages of a progressive disease.  

How to Help a Loved One with Alzheimer’s Lead a More Fulfilling Life

Caring for a person with Alzheimer’s disease is both physically and emotionally challenging.

“Not all caregiving is the same” says Nicole Brackett, LPN, a trainer for professional care staff at Homewatch CareGivers. “Anyone caring for a loved one who is living with Alzheimer’s disease will face unique challenges, many of which change as the progressive illness advances.

Not everyone requires the same kinds of support,” she says. “Symptoms vary from person to person, as does the amount of time they live with the disease.”

Family caregivers know their loved ones intimately and understanding what needs to be done for the sake of their quality of life, overall health, and well-being. The relationship you have with a loved one living with Alzheimer’s disease can play a significant role in helping them to lead a more fulfilling life.

Brackett recommends participating alongside your loved one in activities that they enjoy, such as attending church services, visiting museums, or shopping at the market. “Having a thorough knowledge of the person’s likes and passions makes engagement more targeted and personal. The goal of these interactions is to build understanding and approach each situation with solutions that honor the meaning behind the expression or reaction of the person.”

Leslie Eckford suggests taking your loved one with you while you run errands or go for a drive. “Everyone needs to see and be a part of the world around them, not confined to four walls. It’s like hitting the refresh button for all of us mentally.”

Looking through photo albums is another enjoyable activity for many people with Alzheimer’s disease, providing an opportunity to discuss family photos, favorite vacation spots, and other memories. “Even if a person becomes less verbal, they can enjoy seeing familiar faces who were a part of their life,” Eckford explains.

But however much you love the person you’re caring for, and however prepared you feel to provide the support your loved one needs, it’s common for caregivers to experience anticipatory grief in addition to frustration, fatigue, and even burnout.

“First and foremost, you must understand the importance of taking care of yourself,” says Gary Joseph LeBlanc, Educational Director of the Dementia Spotlight Foundation. “If the primary caregiver’s health goes down, everything comes down with it. I understand from decades of personal caregiving experience this is not as easy as it sounds.”

LeBlanc says routines are critical for people living with Alzheimer’s disease. “Because of their short-term memory loss, it’s important to keep everything in patterns to help them feel safe and comfortable. Breakfast, lunch, and dinner should be scheduled at the same time every day. The same goes for bathing time. If a gentleman has shaved before showering every day of his life, make sure this does not get turned around on him. Keeping a familiar routine will immensely help both of you.”

Caregivers can also play a role in ensuring their care recipient remains socially active. “This might be difficult during the COVID-19 pandemic, but there are online options available for support,” says LeBlanc. “Dementia Mentors is one. Loved ones will have the chance to feel supported and uplifted through online discussions, while the caregiver has the opportunity to take a mental and physical break for the allotted time.”

Local support groups are another excellent resource for caregivers of loved ones with Alzheimer’s.

“Sharing your experiences and learning about what others are or have gone through, along with making new friends, is the perfect way to get educated on what does and does not work. This can make a huge difference in the caretaking experience your loved one receives,” LeBlanc says.

The most important thing, according to LeBlanc, is maintaining a sense of humor. “Whatever you do, never, ever stop finding ways to laugh and laugh hard with the ones you love,” he says. “Not only is it healthy and will help uplift your loved one during this challenging time, it will also help them remember many happy times of the past.”

There is not yet a cure for Alzheimer’s disease, but research continues to advance. The more we come to understand this disease, the better treatments will become and the easier it will be for those living with the disease to manage their symptoms. Research is also critical for raising awareness about the realities of Alzheimer’s disease and eliminating stigma. Today, people living with Alzheimer’s are often treated with the same fear and avoidance afforded to the disease itself. But your loved one’s disease does not have to become their identity. With early diagnosis and treatment, as well as the love and support of family and friends, they can continue to lead full, active lives and experience joy and fulfillment for years to come.

Need help caring for a loved one with Alzheimer’s disease? Learn more about Seniorlink’s coaching and support program for caregivers of Medicaid-eligible friends and family members.

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