An estimated 6.2 million Americans age 65 and older are living with Alzheimer’s disease today, according to the Alzheimer’s Association. Alzheimer’s disease is the most common cause of dementia — a general term for the loss of cognitive ability severe enough to disrupt daily life — accounting for 60 to 80 percent of cases.
Women are disproportionately affected by Alzheimer’s: Two-thirds of Americans diagnosed with Alzheimer’s are women, according to the Women’s Alzheimer’s Movement. What’s more, two-thirds of Alzheimer’s caregivers are women, a role that causes many to take time off or leave their employment permanently.
Black and Hispanic Americans are also disproportionately affected by Alzheimer’s: Older Black Americans are about twice as likely to have Alzheimer’s or another form of dementia as older white Americans, while older Hispanics are about 1.5 times as likely to have Alzheimer’s or another form of dementia as older white Americans.
While there are some medications available today that can temporarily improve cognitive symptoms, none can stop the damage and destruction of neurons that cause Alzheimer's symptoms and ultimately make the disease fatal.
With all of these grim realities, is there anything the average person can do to advocate for those currently living with Alzheimer’s and for the researchers who are looking for better ways to prevent and treat this devastating disease? In fact, yes, there’s a lot you can do.
Awareness Days and Weeks
The Alzheimer’s Association is one of several organizations that, through fundraising events and media campaigns and across social media platforms, works to increase public awareness of Alzheimer’s disease, help families facing the disease learn about available resources, and encourage people to get involved in supporting the cause.
The Alzheimer’s Association focuses its awareness efforts on Alzheimer’s and Brain Awareness Month, in June. Purple is the official color of the Alzheimer’s Association, and throughout June, people around the world wear purple to raise awareness and help fight Alzheimer’s. Purple clothing and accessories are available through the organization's website.
Each year, on the summer solstice — the day with the most light, usually falling on June 20 or 21 — the Alzheimer’s Association promotes “The Longest Day.”
Participants across the globe come together each year to help “stand up to the darkness of Alzheimer's” through an activity of their choice.
The organization suggests that participants turn any favorite activity, from basketball to baking to card games to crafts, into a fundraiser to support the organization's care, support, and research efforts.
To register a fundraising activity, get ideas, or sign up to volunteer, visit The Longest Day on the Alzheimer's Association website.
Some other times of the year when Alzheimer’s disease and the people affected by it are recognized include:
- World Alzheimer’s Month, in September
- National Alzheimer’s Disease Awareness Month, in November
- National Family Caregivers Month, in November
Walks, Bike Events, and Flag Football
Each year, more than 600 communities nationwide hold Walk to End Alzheimer’s events to raise awareness and funds for Alzheimer’s care, support, and research.
In 1989, nine Alzheimer Association chapters held the first Memory Walk, with 1,249 participants raising $149,000. In 1993, the event went nationwide, with events in 167 locations, and raised $4.5 million. In 2018, more than 65,000 teams participated in more than 600 walks across the country, raising more than $90 million.
Today, the Alzheimer's Association’s Walk to End Alzheimer’s is the world's largest event to raise awareness and funds for Alzheimer’s care, support, and research. Participants of all ages and abilities are welcome. Walks are between two and three miles. You can register for a walk as a team captain, team member, or individual. While there is no fee to register for a walk, participants are encouraged to fundraise, both to contribute to the cause and to raise awareness of Alzheimer’s disease in their communities. Find a walk near you by using the tool on the Alzheimer’s Association website.
Here are just a few of the walks that took place in 2021:
- Walk to End Alzheimer’s, Bemidji, Minnesota, October 2, 2021
- Walk to End Alzheimer’s, Foxboro, Massachusetts, November 6, 2021
- Walk to End Alzheimer’s, Brooklyn, New York, September 19, 2021
- Walk to End Alzheimer’s, Coachella Valley, California, November 13, 2021
- Walk to End Alzheimer’s, Gainesville, Florida, October 16, 2021
The Alzheimer’s Association Ride to End ALZ is a one-day cycling event for participants age 13 and older. Cyclists of all skill levels can choose from four routes, ranging from 20 to 100 miles. Events are scheduled in the spring, summer, and fall in different parts of the country, and depending on the ride, the event can last from one to six hours.
RivALZ is a flag football competition where teams of young professional women organized around age-old rivalries, such as East versus West, blondes versus brunettes, or city versus suburbs, raise funds for the Alzheimer’s Association.
Only three RivALZ events were scheduled in 2021:
- RivALZ, Twin Ports, Minnesota, September 18, 2021: Team Blondes vs. Team Brunettes
- RivALZ, Indianapolis, Indiana, October 2, 2021: Team White vs. Team Purple
- RivALZ, Wichita, Kansas, October 23, 2021: Blondes vs. Brunettes
Conferences and Meetings on Alzheimer’s Disease and Dementia
There are several conferences and meetings held yearly to share research findings and offer individuals with Alzheimer’s and their caregivers a chance to network. These include:
- Alzheimer’s Association International Conference (AAIC)
- Mayo Clinic Conference on Brain Health and Dementia
- International Conference on Alzheimer’s Drug Discovery
You can also learn more about Alzheimer’s from the live and taped webinars on the Cure Alzheimer’s Fund website.
Alzheimer’s Association International Conference (AAIC)
This event convenes leading clinical researchers, investigators, clinicians, and the care research community to share research discoveries. It is the world’s largest event of its kind.
In 2021, the meeting took place in Denver and online, and in 2022, it will take place from July 31 to August 4 in San Diego and online.
For more information about past and future conferences, visit the Alzheimer’s Association AAIC page.
Mayo Clinic Conference on Brain Health and Dementia
In 2021, the Mayo Clinic, in collaboration with the Alzheimer’s Association and AARP Minnesota, hosted its inaugural Conference on Brain Health and Dementia to share the latest research findings and information on treatments for dementia. People with mild cognitive impairment (MCI) or early dementia, caregivers, families, friends, and professionals were encouraged to come together to learn, connect, and share resources and support.
International Conference on Alzheimer’s Drug Discovery
Every year, the Alzheimer’s Drug Discovery Foundation (ADDF) hosts its International Conference on Alzheimer’s Drug Discovery. In 2021, the event took place October 4 and 5 online.
Attendees at this annual conference have an opportunity to see the diverse, cutting-edge approaches ADDF scientists are undertaking, while also networking and partnering with academic and industry scientists engaged in drug discovery research for neurodegenerative diseases such as Alzheimer’s.
Founded in 1998 by Leonard A. Lauder and Ronald S. Lauder, the Alzheimer’s Drug Discovery Foundation is the only charity solely focused on finding drugs for Alzheimer’s. The ADDF has awarded more than $150 million to fund over 626 Alzheimer’s drug discovery programs and clinical trials in 19 countries. For more information on the event, visit the ADDF website.
Take Action Through Volunteering
The Alzheimer's Association, which includes a network of 75 chapters, offers a number of volunteering opportunities, whether you have a few hours a week to spare or can make a more significant time commitment. Some of those volunteer opportunities include:
Support Group Facilitator As a facilitator, you’ll lead monthly meetings for family caregivers, adult children, spouses, or people living with dementia in their community.
Community Educator If your public speaking skills are among your best assets, you might want to become a community educator. These speakers help provide education and expand the reach of the Alzheimer's Association program. You must deliver a minimum of 12 presentations per year.
In addition, the organization seeks volunteers for their annual events including Walk to End Alzheimer’s and The Longest Day.
Spread the Word on Alzheimer’s on Social Media
If you can’t participate in a walk, bike ride, or other event, you can show your support, grow awareness, and connect with others through social media.
Facebook Join the Alzheimers’ Association community on Facebook.
Twitter and Instagram On Twitter and Instagram, use the hashtags #Walk2EndAlz, #EndAlz, or #ShowYourPurple to promote an event or show support.
To spread the word about The Longest Day, specifically, take a selfie or a photo of a person you are honoring, or make a video and post it to Instagram and Twitter using the hashtags #ENDALZ and #TheLongestDay to have your post included on the Alzheimer's Association The Longest Day online gallery.
Sign up to become an Advocate for the Alzheimer’s Association, and the organization will send you timely alerts for ways to take simple actions that will help influence national policy and create widespread awareness for Alzheimer’s disease.
In addition, the organization’s separately incorporated advocacy affiliate, the Alzheimer’s Impact Movement (AIM), advances and develops policies to overcome Alzheimer’s disease through increased investment in research, enhanced care, and improved support.
On its Act Now page, AIM offers a variety of ways to contact your congress member regarding legislation that would help people living with dementia and their caregivers. You can also download the ALZ Advocacy app to make sure you have the tools you need to be an advocate.
The American Academy of Neurology is also active in advocating for improved patient care for those with neurological disorders. It encourages the public to share their stories of living with neurological disorders to support those advocacy efforts.
Share Stories and Tips About Living With Alzheimer’s
Alzheimer’s disease is challenging for both the individual who has it and that person’s family, friends, and caregivers. Although everyone’s journey with the progressive disease is unique, personal stories can help us better understand what to expect as we navigate through the various stages of the disease and help us to plan for and cope with some of the more difficult challenges.
Everyday Health has been a platform for both individuals living with memory loss and caregivers to share their stories, including:
- Ed Patterson, who serves as a member of the Alzheimer’s Association’s Early-Stage Advisory Group, was diagnosed with Alzheimer's disease at age 71. He describes his husband’s role in helping him to get an official diagnosis and his support as his caregiver helping him to face this challenge.
- Flutist Eugenia Zukerman recounts how she reacted to her Alzheimer’s diagnosis by writing poetry, which she now reads and discusses with other people living with the disease.
- Austin Drevs describes how his relationship with his father changed — for the better — with his father’s diagnosis of early-onset Alzheimer’s.
- Priscilla Jean-Louis and Peter Karris relate what it’s been like to care for their mothers, both of whom have Alzheimer’s disease.
ALZConnected is a free online community hosted by the Alzheimer’s Association where people living with Alzheimer’s, caregivers, family, and friends can ask questions, get advice, and find support. There are forums dedicated to caregivers, younger-onset patients, clinical trials, and caregivers who have lost someone, among other specific groups.
The American Brain Foundation shares the stories of people living with brain diseases of all types, including Alzheimer’s and other forms of dementia, and invites the public to share their stories of brain disease. You can watch more stories in video form on the foundation’s YouTube channel.
Numerous other Alzheimer’s organizations have online communities and blogs where you can connect with others, share stories, or post about your own experiences include:
- Alzheimer’s and Dementia Weekly
- Alzheimer’s Speaks
- Early Onset Alzheimer’s Blog
- Dealing With Dementia
- Caregiving, from the Women’s Alzheimer’s Movement
Get Involved in Research Studies and Clinical Trials
Individuals with Alzheimer’s or other dementias, caregivers, and healthy individuals are all needed to participate in studies to find better treatments, preventive measures, and ultimately a cure for Alzheimer’s. There are several ways to learn about clinical trials and studies and ways to participate:
The Alzheimer’s Association offers a matching service that can connect you to a trial or study; see their webpage for details.
The National Institute on Aging provides a way to search for clinical studies related to Alzheimer’s, other forms of dementia, mild cognitive impairment, and caregiving.
Banner Alzheimer’s Institute has a program called the Alzheimer’s Prevention Registry that can connect people to research studies taking place in their communities.
ClinicalTrials.gov lists more than 500 studies of Alzheimer’s disease that are currently recruiting participants.
Examples of ongoing clinical trials and studies include:
AGB101 for Mild Cognitive Impairment Due to Alzheimer’s Disease This study is designed to evaluate the effectiveness and safety of AGB101, a low-dose formulation of levetiracetam, an anticonvulsant originally developed for the treatment of epilepsy, to treat mild cognitive impairment. Participants will either receive a tablet of AGB101 or a placebo to take orally once a day for 78 weeks. They will also be assessed for cognitive and functional changes and clinical progression of the disease.
Aerobic Exercise and Cognitive Training for MCI (ACT Trial) This study will compare the effects of pedaling a recumbent stationary cycle and cognitive training alone and together in older adults (65 and older) with mild cognitive impairment. Participants will complete assigned activities three times a week for six months. Researchers will track changes in cognition, fitness levels, brain structure, and function, as well as any progression to Alzheimer’s disease.
Adult Day Plus Program for Family Caregivers Because caregivers typically assume care responsibilities without training or support, they are at risk for multiple health problems, including depression. This study will test the effectiveness of an adult day services program at improving caregiver well-being. The program components include care management, resource referrals, dementia education, situational counseling with emotional support and stress reduction techniques, and skills training to manage behavioral symptoms such as aggression.
Sharing Resources to Help People With Alzheimer’s Disease
Alzheimer’s disease often involves long-term care, and families often face daunting financial burdens. There are many resources available to help families and caregivers navigate these financial challenges.
The Alzheimer’s Association can connect you with low-cost or free community support services, including respite care, support groups, transportation, and home-delivered meals.
They can be reached at their 24/7 helpline: 800-272-3900.
The National Council on Aging’s BenefitsCheckUp online tool can help connect older adults with benefits they may qualify for, including programs that help pay for medication, healthcare, food, utilities, and more.
The U.S. Department of Health and Human Services offers resources for planning for long-term care, as well as information about public programs that help pay for long-term care services.
Benefits.gov is an online resource to help you find government benefits you may be eligible for, including Medicare and Medicaid.
The Alzheimer's Foundation of America (AFA), an organization founded in 2002 by a caregiver to provide support, services, and education to individuals, families, and caregivers affected by Alzheimer’s disease and related dementias, awards prizes to college-bound high school seniors, from $750 for runners-up to $5,000 for the grand prize winner. Applicants submit 1,200- to 1,500-word essays describing the impact Alzheimer’s has had on themselves, their families, or their communities and what they have learned from their experiences coping with the disease.