Dementia is on the rise, and with it, understanding and knowledge about the disease. While this is great news for the more than 47.5 million people worldwide currently living with the disease, as well as the 7.7 million individuals who will be diagnosed with the disease every year, there are still many misconceptions, stigmas and stereotypes that remain.
“One of the biggest fears and concerns for individuals with dementia and their caregivers is the stigma they face,” says Eric Kessler, Executive Director of Bridges® by EPOCH at Westwood, a memory care assisted living community in Westwood, MA.“Many people report being misunderstood and alienated by others who don’t have all the facts about these diseases. It’s essential for us as memory care professionals, caregivers, individuals with the disease and loving family members and friends to help battle these misconceptions and shed light on the reality of these cognitive diseases.”
How Stigma Hurts
Stigma and stereotypes are dangerous because they affect the quality of life and well-being of individuals with the disease as well as their families. Perhaps the most worrisome effect is that when someone discovers they have a form of dementia, they will hide it and not share the diagnosis. They may also refuse to go to the doctor to get an actual diagnosis, because they simply don’t want to know or accept that they have this disease.
“People don’t hesitate to go to the doctor if they have diabetes or heart disease, because most of us want to get the medical help we need to live the best quality of life possible,” says Eric. “I try to tell people that the same should be true with cognitive diseases like dementia. Even though we don’t currently have a cure, there are still many things we can do to help slow the progression of the disease and help people live the best possible quality of life. The thing is, though, that most of our treatments available are most effective in the early stages, which is why it’s so important to take action as soon as you notice issues. If there is still a strong stigma about the disease, more and more people who could have been helped will hesitate and miss out on opportunities.”
Other medical effects that stigmas and stereotypes have are:
- Not making plans for the future
- Not being able to benefit from available treatments and clinical trials
- Not developing a strong support system
Besides the medical side of things, misconceptions can cause issues in relationships and friendships. Friends may withdraw, leaving individuals to feel isolated and abandoned. Family members may refuse to accept or talk about the disease, causing them to avoid interaction and giving the individual up as a lost cause.
“These relationship effects are the biggest reason why many people hesitate to get diagnosed or share their diagnosis,” says Eric.
Overcoming the Stigma of Alzheimer’s Disease
If you or a loved one have dementia, the last thing you may want to think about is being an advocate for the disease. However, by being open and honest and doing your part to share with friends and loved ones about the diagnosis, we will all take steps towards overcoming the stigma and helping more people get the assistance they need. Here are some tips from the Alzheimer’s Association® about how to do your part in overcoming the stigma of dementia.
If you’re the one who’s been diagnosed…
Be honest and direct. Let others know about your disease, and engage them in discussion about its effects, the need for better research and treatment and the hope for an eventual cure. Communicate the facts and share important information to dispel misconceptions.
Stay connected and build a support network. You will need the support, assistance and love of your family and friends now and as the disease progresses. Not only that, staying socially engaged and emotionally connected is one of the best things you can do to improve your cognitive function and have a high quality of life.
Understand and let others know the disease doesn’t change who you are. Many people view dementia as an immediate decline where you are no longer able to do things, enjoy life and be happy. Let them know this is not the case. You are still the same person you were before the disease, with the same interests, hopes, loves and memories. Even if when your abilities and actions change, the relationship you’ve formed with friends and loved ones will always be there.
Share your story. As someone living with dementia, yours is a powerful voice to help advocate and raise awareness of the disease. When you’re able and if you’re willing, consider sharing your story and making a difference in the fight against these diseases.
If your loved one has been diagnosed…
Change your vocabulary. It may sound overly “PC,” but the truth is that the way people speak contributes greatly to how a disease like dementia is perceived. As you’re talking to others about your loved one or dementia, try and speak in ways that humanize the person. For example, don’t just say someone “has dementia;” they’re “living with dementia.” They aren’t living in a “nursing home;” they’re living in a “memory care community.”
Share the facts. When people have a misunderstanding about the disease or its effects, look at is an opportunity to educate them about the actual facts. Sharing information will help others better understand dementia.
Stay connected. Meaningful relationships and connections are important for everyone involved in the dementia journey. If you are the primary caregiver for your loved one, remember that caring for yourself is just as important as caring for the individual with dementia. Build your own support network and carve out time to find joy in life.
Stay positive. This is easier said than done on most days! However, the reality is that you will face negative thoughts and responses from other people. Know that this does not reflect on you, your loved one or the person speaking. Don’t be discouraged and stay positive. There is no shame in your loved one having dementia, just as you wouldn’t be ashamed if they had heart disease or cancer.
“If we can slowly change the way dementia is talked about and seen, we can help end the stigma associated with it,” says Eric. “It won’t happen overnight, but the more of us who educate and advocate, the better chance we have towards building a better quality of life for our loved ones and hopefully finding a cure once and for all.”
Personalized Lifestyle
Bridges® by EPOCH at Westwood provides assisted living memory care that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia or memory impairment, we’ve created a wellness-focused lifestyle that promotes dignity and individual preferences. Our memory care professionals receive specialized and ongoing training designed to help residents maximize their independence in a secure, calm environment – making a truly positive impact on the lives of our residents each and every day.
Personalized Services
Our care and services are designed to recognize and adapt to the individual challenges and personalities of our residents, while making sure they are comfortable and safe. We believe in a full-service approach to care and provide a high level of personalized attention for every resident through all stages of memory loss.
Our Amenities
Bridges® by EPOCH at Westwood features a distinct design, providing residents with everything they need to enjoy comfort, familiarity and security. Our community is built specifically to benefit those with Alzheimer’s disease and memory loss … so we use soft colors, directional cues, aromatherapy and interactive life stations to create a soothing, safe environment where residents feel at ease.
Contact us today to learn more.