For those diagnosed with Alzheimer’s disease or another form of dementia, one of the most difficult struggles of coping with the disease exists outside the brain. Unfortunately, a great deal of stigma still exists surrounding memory loss, mainly due to the fact that many people don’t understand what exactly Alzheimer’s is. Many misunderstand the disease as minor forgetfulness, without realizing the intensity of cognitive change that takes place. Others may view dementia as a sudden loss of all abilities from thinking to speech and self-care. Yet, while the reality of most of those living with Alzheimer’s disease falls in between these two extremes, those diagnosed and their family and caregivers must deal with the various reactions caused by Alzheimer’s stigma.
“As with other stigmas, such as those surrounding mental health or people with disabilities, stigma about Alzheimer’s disease can make it even more difficult for those diagnosed,” says Rob Low, Community Relations Director at Clarity Pointe™ Pensacola, a memory care assisted living community in Pensacola, Florida. “Harmful stigmas can make it hard for those with memory loss to seek support from loved one or professionals. It can hurt their emotional health by tearing down their self-esteem or isolating themselves from people who don’t understand their illness. As difficult as it can be to address the misunderstandings people have about the disease, those diagnosed as well as their families have a unique opportunity to shed some light on this disease and help to fight against these damaging stigmas.”
How to Combat Stigma Surrounding Alzheimer’s
According to the Alzheimer’s Association® , it’s important for those caring for loved ones with dementia and those individuals themselves to address the stigmas that exist about their disease in order to experience the highest quality of life. Many diagnosed individuals and their caregivers experience undue shame, isolation and pain due to society’s misunderstandings about their reality.
If you have been diagnosed with Alzheimer’s disease or know and love someone who has, follow these useful tips for addressing Alzheimer’s stigma in your community:
- Get comfortable with your reality – Before you can help others understand what Alzheimer’s disease really is, you have to understand it for yourself. Become educated about the disease and how it affects your daily life. Then, although it’s easier said than done, learn to accept the reality of your or your loved one’s situation. Once you’ve come to terms with the changes you and your loved ones are likely to face, it will be easier to share your perspective with others and teach them what Alzheimer’s is and is not.
- Talk about it with family and friends – Share your diagnosis with those closest to you, such as family members, friends or even trusted coworkers. When people realize that they know someone with the disease, they may be more likely to learn about it and be more sensitive to its symptoms. Sharing this part of your life with people you trust can help you come to terms with the disease, as well as pave the way for valuable support connections as you need them.
Sadly, some family members or friends may distance themselves once they learn of your diagnosis. This reaction may be due to the fear that they won’t know how to respond to you, or it may be a defense against future grief. As painful as their choice might feel, try not to take their distance personally and take comfort from the people who continue to stand by your side.
- Join a support group – Stigmas exist because the number of people who don’t understand is greater than those who do. Therefore, it’s important for those dealing with Alzheimer’s to surround themselves with others who get what they’re going through. Support groups for individuals and caregivers are safe places to share your struggles and celebrations with people who understand the disease. Fellow group members may also become valuable people in your life who can lend a hand with care responsibilities, encourage you when you feel down and inspire you to share your stories outside of the group. You may even inspire someone else in the group to stand up against Alzheimer’s stigma by the way you live your life.
- Raise awareness – You and your family can personally combat Alzheimer’s stigma by raising awareness about the disease in your community. This can happen organically in conversations with friends and neighbors, or through organized efforts. You can coordinate with your local Alzheimer’s Association® chapter to set up a table in your local mall or outside the grocery store to hand out fact sheets and brochures with information about the disease. Not only does this help get information into the hands of those who don’t understand much about memory loss, but it may even help others recognize their own symptoms and seek an early diagnosis.
One great way to raise awareness of Alzheimer’s disease is to participate in your local Walk to End Alzheimer’s™. You and your family, friends, coworkers and neighbors can create a team, raise funds for research and connect with others in the community who are walking with you. This annual event also gives you a great reason to talk about memory loss with others and share why you’re walking.
- Share the facts – If you want to fight a stigma, you need to share the facts. So many have misconceived notions about what Alzheimer’s is or isn’t. Unless they’ve searched for the information on their own, they’re not likely to be educated about the disease. When you tell people about Alzheimer’s, be sure what you’re saying is true. Use research-based facts and figures to help others get a clear picture about the nature of dementia and its significant prevalence throughout the senior population.
- Be open and honest – Shying away from the most uncomfortable parts of Alzheimer’s disease is just another way stigma grows. While there’s an appropriate time and place to share personal details, be open with others in your life about the effects of your or your loved one’s disease. Steer clear of denial. When someone asks how you’re doing, be honest with your answer. People may not realize how serious your problems are if you always pretend that you’re fine. Sometimes, we have to be vulnerable in order to give others the opportunity to show us the depth of their support.
- Get involved in your community – Another way to fight the stigma about Alzheimer’s is to prove them wrong. People living with the disease are often capable of doing meaningful things, such as volunteering, participating in community events and pursuing their favorite hobbies and passions. If you’re caring for someone with dementia, encourage them to stay involved in their community. Take them to choir practice or community functions and help them schedule times to volunteer at their local food bank. When people see those with memory loss out and about in their community, they may rethink the stigmas they’ve held about the disease.
(Please remember that in the later stages of Alzheimer’s, some activities may no longer be safe or possible for loved ones. Never force your loved one to do something they can’t or don’t want to do for the sake of appearance.)
- Don’t be discouraged – As you and your loved ones learn how to cope with the effects of Alzheimer’s disease and the stigmas that surround it, you may run into people who refuse to understand or listen to your point of view. Don’t let these people discourage you. When you face difficult conversations or see stigma manifest in the worst ways, do what you can to address it, then seek support from those who love and care about you. We can’t change the whole world at once, but by staying strong, we can make a difference.
Find Support for Your Journey
“Clarity Pointe™ Pensacola and the caregivers who serve our residents are proud to be advocates for those with Alzheimer’s disease and other forms of dementia,” says Low. “We experience the realities of individuals and families living with the disease every day, and we understand the unique ways it can affect lives. Our team is a trusted resource for support as you navigate your journey with memory loss. Whether you need guidance for raising awareness or could use some advice as you talk to family and friends, we’re here to help.
“Contact Clarity Pointe Pensacola today for support in your family’s journey.”
Clarity Pointe™ … Our Difference is Clear
Clarity Pointe™’s Specialized Memory Care “Living” Neighborhoods are truly changing lives for those with Alzheimer’s disease and other dementias – and for those who love them. At Clarity Pointe, our mission is to ensure our residents lead connected and rewarding lives.
Unlike other providers that offer a secure memory care wing in a skilled nursing or assisted living center, Clarity Pointe Pensacola offers three free-standing, purpose-built memory care communities that are solely and entirely dedicated to memory care assisted living. Our communities blend luxurious surroundings with specialized care that is individualized to each resident and delivered by a compassionate, expert team of professionals.
We stay current on the latest trends and advancements in Alzheimer’s care and implement them into our residents’ care plans. Always moving forward, we combine the latest in evidence-based programming with luxurious, residential living and compassionate respectful care.
For each of our residents, we offer a life that is engaging, fulfilling, inspiring and meaningful.