Battling Alzheimer’s Stigma: How Family Can Advocate for Loved Ones and Stop Common Misconceptions
What do you think of when you hear the word dementia? For many people, until they themselves or a loved one receive a dementia diagnosis, what first comes to mind is a bumbling and forgetful old person. Someone who is made fun of and/or to be avoided. These popular culture depictions of Alzheimer’s disease and dementia can lead to Alzheimer’s stigma.
What is Alzheimer’s stigma?
When a condition is as prevalent as dementia — of which Alzheimer’s disease is the most common form — yet still poorly understood, it can lead to:
- Harmful and misleading assumptions
- Negative language
- Belittlement and jokes
- Lack of support after diagnosis
- Stigma by association that extends to families and caregivers
- Loss of self-worth
- Reduced quality of life
Even though dementia can affect anyone and there is no cure or treatment that can guarantee prevention, society at large lacks empathy and understanding. This lack of public awareness of dementia can prevent people from:
- Seeking medical treatment when symptoms first show up
- Receiving an early diagnosis, or any diagnosis at all
- Living the best quality of life possible while they still can
- Making plans for their future
- Benefitting from available treatments
- Developing a support system
- Participating in clinical trials
Fighting Alzheimer’s Stigma
Here are some tips for fighting the stigma of dementia from current and former members of the Alzheimer’s Association National Early-Stage Advisory Group. This group is made up of individuals experiencing the early stages of dementia who help raise awareness about the condition. Their suggestions include:
- Be open and direct: Engage others in discussions about Alzheimer’s disease and other forms of dementia and discuss the need for prevention, better treatment and an eventual cure.
- Communicate the facts: Sharing accurate information is key to dispelling misconceptions about dementia. Whether a pamphlet or a link to online content, offer information to help people better understand the forms of dementia.
- Stay connected: Having a network is critical. Stay engaged in meaningful relationships and activities with family, friends or a support group. If possible, find an early-stage support group near you.
- Stay positive: Denial of the disease by others is not a reflection of you. If people think that Alzheimer’s disease is normal aging, see it as an educational opportunity and teach them the difference.
- Be a part of the solution: The most powerful voice to help raise awareness, end stigma and advocate for more Alzheimer’s support and research is yours. Learn how you can make a difference in the fight against Alzheimer’s.
Progress Is Being Made Against Alzheimer’s Stigma
While it might seem like there’s a lot of work to do, Dementia Friendly America is making some progress against the stigma of dementia. Dementia Friendly America is a national network seeking to ensure that communities, organizations and individuals across the country are equipped to support people living with dementia. They believe every part of the community plays a role in creating a dementia-friendly culture and that by working together we can provide places that are safe and respectful of individuals, their families and caregivers.
Groups that can offer supportive options to help foster a better quality of life include:
- Businesses and banking that support customers with dementia by accommodating cognitive impairment.
- Law enforcement and first responders who recognize signs of dementia and respond accordingly.
- Healthcare systems that promote early diagnosis and connect individuals with community services.
- Faith communities that offer specialized programs, services or accommodations.
- Local governments planning and implementing housing, transportation, public spaces and emergency response that enable people with dementia and care partners to thrive.
- Community members who learn how to interact sensitively and create networks of support.
- Restaurants, grocery stores and libraries that offer services and support that foster access and independence.
- Employers that support employees who are caregivers through proactive personnel policies.
- Residential care and community services that offer a range of services to maximize independence and support ongoing community engagement.
Find Dementia Support For You and Your Loved One at The Ridge
Raven Storm, Senior Sales and Marketing Director at The Ridge Cottonwood Senior Living, is an expert in dementia care and has presented at statewide conferences and trained individuals on dementia care. He currently facilitates two Dementia Caregiver Support Groups a month in the Salt Lake Valley.
Raven believes, “A person with dementia can still have quality of life. They still have so much to offer us, their wisdom, their life experiences and their stories. At The Ridge Cottonwood, we have an amazing Dementia Caregiver Education/Support Group that’s free and open to the public and meets both in-person and virtually. We discuss all aspects of dementia care and really focus on giving family members the tools they need to effectively communicate with loved ones who have memory impairments.”