Alzheimer's Association - National Office

Last week, nearly 12,000 attendees, both in-person and virtual, joined the Alzheimer's Association International Conference® (AAIC) — the world’s largest and most influential international meeting dedicated to advancing dementia science. As the hybrid conference comes to a close, here are five learnings as the research community continues to seek treatments, earlier detection and prevention strategies for Alzheimer’s and all other dementia. What is the Long-Term Cognitive Impact of COVID-19? It’s vital to study how Alzheimer's — a global health crisis — relates to the global pandemic that is COVID-19. With over 4 million deaths worldwide, COVID-19 has especially impacted older, vulnerable populations, including people living with Alzheimer’s and other dementia. While an unwelcome opportunity, the pandemic has enabled researchers to study the impact of viral infection on the brain. Initial data presented at AAIC 2021 suggest older adults may suffer lasting cognitive impairment after recovery from COVID-19 infection. As these symptoms persist for many, researchers are working to understand why, and what this may mean for long-term cognitive health. One study conducted over six months in nearly 300 older adults from Argentina who had COVID-19 found more than half had continuing problems with forgetfulness, and 25% had additional problems with cognition. These difficulties were also associated with an enduring lack of smell. This new data comes from first reports from an international consortium evaluating the long-term impact of COVID-19 on the brain. With guidance from the World Health Organization, the consortium includes scientific leaders from the Alzheimer’s Association and study teams representing nearly 40 countries. The Takeaway While we work to understand the long-term impacts of COVID-19 on our bodies and brains, the “take home” message to protect cognition is simple: don’t contract COVID-19. The best way to prevent getting COVID is to get vaccinated. If you do contract the virus, it’s especially important to take care of your cardiovascular health. If you have been infected with COVID, it doesn’t necessarily mean you’re at an increased risk for dementia or Alzheimer’s. We're still trying to understand what that relationship is, but if you are experiencing symptoms such as “brain fog” or memory loss, you should talk with your doctor. Improved Air Quality May Decrease Dementia Risk Multiple studies presented during AAIC 2021 are the first to suggest that reducing pollution is associated with lower risk of dementia and Alzheimer’s disease. When looking at air quality over time, findings include: Reduction of fine particulate matter and traffic-related pollutants over 10 years was associated with 14% and 26% reductions, respectively, in dementia risk in older U.S. women. Long-term exposure to air pollutants was associated with higher beta amyloid levels in the blood, showing a possible biological connection between air quality and physical brain changes that define Alzheimer’s disease. The Takeaway We know that air pollution is bad for our health — including our brains. This new data indicates that improving air quality may actually reduce the risk for dementia. More research is needed in low and middle income countries that we know experience high levels of air pollution, and as areas of the U.S. with high levels of pollution tend to be populated by low income individuals and people of color, it’s important that we continue to study this relationship. The hope is that this research will help to inform policies and actions — likely including coordination with federal and local governments — to address air pollutants and to develop effective strategies to reduce risk in all communities. Transgender Adults Experience Higher Rates of Subjective Cognitive Decline The first dementia prevalence data for U.S. lesbian, gay and bisexual individuals was reported at AAIC 2018, and researchers have since explored experiences of cognitive decline and dementia in these and other LGBTQ communities. Nonetheless, little is known about the intersection of gender identity and cognition, and AAIC 2021 included some of the first-ever reports of cognitive changes in transgender individuals (those who identify with a gender different than the one assigned to them at birth) and gender nonbinary individuals (those who identify outside the male/female binary). One team examined data from the Behavioral Risk Factor Surveillance System and found that transgender adults were nearly twice as likely to report subjective cognitive decline, and more than twice as likely to report subjective cognitive decline-related functional limitations, such as reduced ability to work, volunteer or be social. Another team used the same data set and found that depression — a risk factor for dementia — was significantly higher for transgender and gender nonbinary adults (37%) compared to cisgender adults (19.2%). The Takeaway More research is needed to understand cognition in the transgender and nonbinary communities, and all sexual orientations and gender expressions. The Alzheimer’s Association has partnered with SAGE (Advocacy & Services for LGBT Elders) to help support LGBTQ community members living with Alzheimer’s or other dementias, and their caregivers. Learn more. Global Prevalence of Alzheimer’s Predicted to Triple by 2050 It’s a stark number: According to the World Health Organization, more than 50 million people are living with dementia worldwide. Now, new data presented at AAIC 2021 forecasts global dementia prevalence will triple to 152 million by 2050. Without effective treatments, this number will only continue to grow, creating an unsustainable burden on families and health care systems. While positive global trends in education access are expected to decrease dementia prevalence worldwide by 6.2 million cases, upward trends in smoking, high body mass index (BMI) and high blood sugar are predicted to increase prevalence by nearly the same number — 6.8 million. Other statistics reported at AAIC 2021 provide new insight into global rates of younger onset Alzheimer’s, and differences in regional U.S. mortality rates due to Alzheimer’s: Each year, an estimated 10 in every 100,000 individuals develop dementia with early onset (prior to age 65). This corresponds to 350,000 new cases of early onset dementia per year, globally. We’ve learned that from 1999 to 2019, the U.S. mortality rate from Alzheimer’s in the overall population increased from 16 to 30 deaths per 100,000, an 88% increase. Also from this study, among all areas of the U.S., mortality rates for Alzheimer’s were highest in rural areas in the East South-Central region of the U.S., where the death rate from Alzheimer’s is 274 per 100,000 in those over 65. The Takeaway While new analysis shows a decrease in prevalence due to education, it is countered by the increase due to heart health risk factors. We must continue to work toward effective treatments to stop, slow or prevent Alzheimer’s and all dementia, or this number will only grow and continue to impact individuals, caregivers, health systems and governments on a global scale. Clinical Trial Diversity is Crucial A major hurdle in developing treatments for Alzheimer’s disease that work for people of all backgrounds is the recruitment and retention of underrepresented groups into clinical trials. Minorities have historically been left out of clinical Alzheimer’s research — in fact, all clinical research — and these are the very populations at a higher risk for developing Alzheimer’s. Data from the Alzheimer’s Association’s 2021 Facts & Figures special report found nearly two-thirds of Black Americans (62%) believe that medical research is biased against people of color — a view shared by substantial numbers of Asian Americans (45%), Native Americans (40%) and Hispanic Americans (36%). Only half of Black Americans trust a future cure for Alzheimer’s will be shared equally regardless of race, color or ethnicity. At AAIC 2021, researchers shared new, evidence-based insights into why people from communities of color choose to participate in clinical trials — or not: Individuals are most willing to volunteer if invited to participate (85%), if they want to contribute to research (83%) or have a family member with the disease (74%). Black, Latino and American Indian respondents are significantly more likely to volunteer if asked by a person of the same race. According to a review of National Institute on Aging-funded Alzheimer’s and dementia clinical trials, commonly used exclusion criteria disproportionately affect Black Americans and Hispanics/Latinos, and may play a role in their reduced enrollment in research. The Takeaway Simply put, diversity is crucial to the success of clinical trials. The Alzheimer’s Association is proud to support the bipartisan Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act, legislation introduced to increase the participation of underrepresented populations in dementia clinical trials by expanding education and outreach to these populations. Today, the Alzheimer’s Association is leading the way with two clinical trials that focus on diverse participation. The New IDEAS study is recruiting 2,000 Latinos/Hispanics and 2,000 Blacks/African Americans to investigate the impact of a brain amyloid PET scan on clinical care outcomes. The U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (U.S. POINTER), is a two-year clinical trial studying the effects of multi-component lifestyle interventions on risk of cognitive decline in a diverse population in the U.S. To address the growing need for clinical trial participants, there is Alzheimer’s Association TrialMatch®, a free clinical studies matching service with a current database of more than 550 studies being conducted across the country and online. Alzheimer’s disease and other dementias are a global health crisis, one that can only be solved through research. As scientists continue to advance new discoveries, we are filled with hope as we continue our work toward a world without Alzheimer’s and all other dementia. As the largest, private, non-profit funder of Alzheimer’s and dementia research, the Alzheimer’s Association leads, convenes and accelerates research in order to create a world without Alzheimer’s and other dementias.

Valerie Tsosie, Navajo, is a community educator with the New Mexico Chapter of the Alzheimer’s Association. She leads the So’Tsoh Foundation, an organization that aims to create pathways to better health by offering innovative solutions for Diné caregivers. In partnership with the National Indian Council on Aging (NICOA), a long-standing organization focused on the needs of aging American Indians and Alaska Native elders, the Alzheimer’s Association recently offered a webinar, “Understanding Alzheimer’s and Dementia,” which examined the impact of Alzheimer’s and how it affects these Native communities. Led by Valerie, the program included information about stages of the disease, risk factors, current research and treatments, and information on how individuals and families affected by the disease can access Alzheimer’s Association resources. “Sharing the importance of an early diagnosis is one of the topics I always focus on,” Valerie says. “There are so many moving parts for families to think about.” During Alzheimer’s education sessions with Native communities, Valerie says that Native families are open to learning more about the disease — and eager for resources. “These communities don’t have central offices, places to provide and house educational materials — and that includes Navajo, and we are one of the biggest in the nation.” When she started as a caregiver resource specialist with the Navajo Nation Division of Aging In 2018, Valerie was conducting caregiver education alongside five different agencies. That is when she realized that each individual Native community has their own very unique needs. “But at every training, people would ask the same question about signs in their mom, or grandpa: ‘Is this Alzheimer’s?’ Thankfully I received the Road Map for Indian Country training, bringing these learnings back to our people,” Valerie says. The Healthy Brain Initiative (HBI) Road Map for Indian Country is a guide for American Indian and Alaska Native leaders to learn about dementia and start discussions throughout their communities. In working with tribes other than Navajo, Valerie discovered that American Indian and Alaska Native communities are facing many of the same hurdles. “The training was so helpful in how to approach these sensitive topics. I continually catch new people being impacted by the disease who need our help. I am identifying new and existing caregivers all the time.” Caring for Our Elders, Who Cared for Us In American Indian and Alaska Native communities, elders are the spiritual leaders, and there is a stigma around placing elders in long-term care communities. As these elders develop dementia, they are being cared for by family, in multigenerational homes, especially due to the effects of the COVID pandemic. But another obstacle exists. “Young people are encouraged to get an education, but if they are away from reservation for four to eight years,” Valerie says, “what happens to their families when they leave?” Data from the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report indicates that while 92% of Native Americans feel it is important for health care providers to understand a person’s ethnic or racial background, fewer than half feel they have access to providers who are culturally competent. “Like many people in the later stages of Alzheimer's, Native people can become combative about leaving home, but more particularly their land, and being taken to a new, strange place,” Valerie says. “Unfamiliar people, doctors especially, can be very frightening, especially doctors who don’t speak their language.” In Native communities, Valerie says, “Caregivers don’t identify as caregivers. Caring for their own is a way of life for Native people: You have children, you care for them, and when your parents age, you care for them. People will say: ‘I am not a caregiver, but I need information.’ When asked what they do, they list all the activities and responsibilities of a caregiver. I tell them, unequivocally: ‘You're a caregiver.’ Many people in our communities think you are only a caregiver if you are being paid, caring for someone outside your own family unit.” In addition to the hurdles around care and the family unit, reservations don’t have traditional resources within their grasp. “Our people don’t have easy access to pharmacies, hospitals, or traditional grocery stores. Some people must travel 30 minutes on a dirt road to reach another paved road, where they must travel another 30 minutes, and so on,” Valerie shares. “Supporting these caregivers on the reservations by providing resources and educating communities will result in better care.” Caregiver programs in American Indian and Alaska Native communities delivered by dedicated educators like Valerie importantly allow people to receive education and support from someone they trust, who looks like them, and who speaks their language. Death is taboo in Native cultures, yet Valerie knows that unanswered questions around Alzheimer’s only happen when people are passive. “I tell people: ‘If you have questions, keep asking.’ If you need help, we can find the answers. Be your own advocate, and be prepared when you go to the Indian Health Service (IHS), writing down the signs and changes you see in your loved one. Push for an accurate diagnosis.” As part of the Navajo nation, Valerie says other surrounding tribes differ in their own traditions, and way of life, and educators have to come into the situation with understanding. “I’m here to help people because I know that the struggle is very real for our communities. Education I provide through the Alzheimer's Association can help these communities face Alzheimer’s together, and help people realize that they are not alone.” Native communities are still greatly in need of solutions to care and the cost of care for elders. With support groups, training and educational programs in place, Valerie wants the public to know the facts. “Caregivers are a critical part of approaching the aging population. Without them, much of the economy would not function. It’s my goal to continue to make a difference in Native communities as we face this disease as a nation.” Learn what the Alzheimer's Association is doing to address health disparities and provide support for Native Americans facing Alzheimer's. https://www.alz.org/help-support/resources/native-americans

Lesley and Rob Sattin were first married in 1987. On February 14, Valentine’s Day 2017, Rob received his diagnosis of Alzheimer's disease at the age of 59. Here, Lesley shares their story. I first met my husband Rob over a citizen’s band (CB) radio in 1984. Breaker, breaker! We chatted for two weeks, and the day Rob came to meet me, I told my mom: “I am going to marry this guy.” I fell in love with him the first day I saw him. I think the Italian lilt of his accent did it! In May 1984, he asked me to be his girlfriend, saying: “Will you be my girl?” We got married in 1987 in Johannesburg, South Africa. Rob had the kind of mind that remembered everything: numbers, tiny details — everything was in his head. He was one of the smartest people I have ever known. He always wanted to be the best, have the best. So extraordinarily motivated, always reserved. He started his own HVAC company in South Africa from scratch, and when we moved to the U.S. in 1991, it grew into a huge success. Rob was the dominant personality in the marriage, and our family was used to having anything we wanted thanks to the success of his business. He was very traditionally male, and when I became the breadwinner, that transition was difficult. The roles had reversed. Today, I take care of Rob. Today, I am no longer a care partner to my husband as much as I am a caregiver. I am lucky that our sons, who are in their 20s, live nearby, as do Rob’s parents and sister. We are lucky to have live-in help in the form of Rob’s sister’s mother-in-law, who is 85. While I work from home and attend meetings, she is an extra set of eyes and ears who can alert me of any issues, like Rob wandering. Another blessing. And while I have a huge network of support around me, Rob still gets agitated if the person nearby isn’t me. Today, Rob can still walk on his own, use the washroom, keep himself occupied — but he doesn't talk much. Alzheimer’s has changed him completely. Today, he likes to draw and color, and arrange beads and other items; this repetition helps his agitation and anxiety. He also takes medication for these symptoms, and fortunately responds well to that. He is happy to come with me on my work errands and help carry boxes. This is not the Rob I met in the 1980s. February 14, 2017 The day of Rob’s diagnosis just happened to be Valentine’s Day. I felt relief in some ways, since it had taken two years to get a diagnosis. In hindsight, symptoms were there as far back as 2012. I reached the end of my tether about a year before his diagnosis. It truly was the worst year of my life. I was floundering. Rob had driven the business into the ground due to this disease, and we were all brought to our knees. We would go to his doctor together, and I’d say, “He is forgetting things; he is disconnected. He is not himself.” He always insisted that nothing was wrong with him, a lot of denial. I said: “If there is nothing wrong with you, then why are you acting this way?” I always knew that if I ever left him, it would be the end. His pride wouldn't allow him to change to get me back. It was once he began to battle his disease that his personality completely changed from that of an alpha male to a devoted, hyper-loving husband. He sent me flowers, chocolates and teddy bears to win back my love during a time when things were incredibly strained. Turning Point It was then that I sat down with him and said: “We need to seek counseling, look at our finances.” I had a list of things that needed to change. He said: “No problem. Whatever you need.” I think he knew something was wrong, and he was terrified of losing me. And now he was opening up and accepting love and help, saying it out loud. After a tumultuous relationship — we were just 18 and 26 when we met — he was finally relinquishing control. He allowed me to step up, something I had to do for both of us. We both got a tattoo that reads ‘quatervois,’ which means a crossroads, a turning point in life. Since the day we both got that tattoo, we never had an argument again. Saying “I Do”: Part Two Rob doesn't remember me as his wife. One day, he asked if I was married. When I told him that I was his wife, he said he couldn't possibly be married, because he didn't have a ring. (In his HVAC business, wearing a ring could be a safety hazard, so he never wore any kind of jewelry.) My response? “If you want a ring, you're going to have to marry me — again!” And he replied: “I would love to marry you.” On October 3, 2021, the day of our 34th wedding anniversary, he did just that. It was the most amazing day. Our church community all came together for a potluck, a far call from the lavishness of our first wedding. But this was even more special. There was love all around us, in every corner. I wore the headpiece I had worn 34 years earlier, and our sons walked me down the aisle. This experience was so meaningful to me. I had walked that same walk 34 years ago as a very young woman. I had no idea what ‘for richer or poorer’ or ‘in sickness and in health’ really meant. I had this naive, fantastic idea of what marriage is. Many of us have no idea how hard it is, the sacrifices you will need to make. I immediately fell in love, but years of difficult moments made it hard to sometimes focus on that love, especially when Rob displayed strange signs I didn't understand to be Alzheimer’s. Being able to bring back that love — that’s God. God helped me to soften my heart, keep the past in the past, and make that vow again knowing what I know now, that Rob has a terminal disease, and that he will require everything I have to give. I went into this renewal of vows more prepared, with open eyes and an open heart. Being able to do that in front of God was a gift. This event allowed people from all parts of our lives to come together, an opportunity to pay homage to the life we built together. Today, I know Rob likes me. He loves me. He needs me. But he does not remember that I am his wife. I am just so thankful for the day he said he wanted to marry me again. It touched my heart and gave me the strength I needed to be the best caregiver I can be. It's my goal for him to feel safe, and loved, and to keep him close to me. I want him to live with dignity, respect and most of all — love. At our vow renewal, we released 34 doves. We’ve had 34 years of challenges, but most of all, 34 years of a love that continues to develop, change, endure. We are lucky. We are blessed. *This post was adapted from an interview with Lesley Sattin. About: Alzheimer’s disease runs in Rob’s family, and the family are participants in the Walk to End Alzheimer’s, raising nearly $32,000 since their first walk in 2017. Today, the couple live in California with their furry friends, close to family, friends and their church. Read Lesley's blogs about the couple's journey.