A free teleconference series covering a wide range of topics with leaders in the Alzheimer's community
Is depression or anxiety a risk factor for Alzheimer’s disease – or the other way around? For our May 2018 Talk, we spoke with Jennifer R. Gatchel, MD, PhD, a geriatric psychiatrist at Massachusetts General Hospital and an instructor in psychiatry at Harvard Medical School.
Dr. Gatchel shared an overview of what we know, current theories on this topic, and insights from her own research, which has found links between depression and anxiety symptoms and buildup in the brain of tau and amyloid. Through a mix of brain imaging, cognitive testing, clinical assessments, and ongoing interactions with patients, her research aims to improve care and brain health for older adults.
How often do Alzheimer’s and depression occur together? One source found that up to 40 percent of those with symptomatic Alzheimer’s Disease also have depression. Dr. Gatchel notes that there is also evidence for a link between Alzheimer’s Disease and anxiety.
Is one a risk factor for the other? What does research tell us? Compelling evidence exists to support a bidirectional relationship between depression and Alzheimer’s Disease. Data from large population studies suggest that recurring depression throughout the lifespan is indeed a risk factor for Alzheimer’s Disease and related dementias. Moreover, when depression and other neuropsychiatric symptoms are present in Alzheimer’s Disease, dementia progression can be hastened.
However, she says, we do not know definitively whether the opposite is true—if Alzheimer’s Disease pathology influences the development of depressive symptoms.
With funding from the NIH National Institute on Aging, Dr. Gatchel is leading a new study to investigate depressive symptoms in the early stages of Alzheimer’s Disease, when cognition is normal, but evidence of Alzheimer’s pathology can already be seen in brain scans. Participants will be followed for 4-5 years to assess whether mild or moderate depression—especially depression that begins later in life—is a marker of a faster trajectory along the Alzheimer’s Disease pathway. She hopes to tell if depressive symptoms, whether cause or consequence of Alzheimer’s Disease, contribute to more rapid accumulation of Alzheimer’s Disease brain proteins and memory decline in living older adults—a question that has never before been tested.
Can antidepressants help reduce Alzheimer’s risk? Any interventions that can lessen symptoms of depression and anxiety may promote brain health, which could protect against Alzheimer’s, but current evidence related to antidepressant medications is somewhat conflicting.
A study published in 2018 in the British Medical Journal found that antidepressants may be linked to dementia; however, while it found a connection, it did not address causality. Another study, also published in 2018, as part of the large Alzheimer’s Disease Neuroimaging Initiative (ADNI), found that those with mild cognitive impairment (MCI) who were prescribed a specific category of antidepressants over the long term, compared to those with short term use of these medicines or those with no history of depression, had a lower risk over time of MCI becoming Alzheimer’s—suggesting a possible protective role for these medicines.
Are some depression symptoms more concerning than others? Preliminary data from research under way suggests that certain aspects of depression and anxious depression may be more closely related to imaging biomarkers that indicate Alzheimer’s Disease. However, we do not yet have data over time on this question. A secondary aim of Dr. Gatchel’s current NIH-funded study is to learn whether certain constellations of depressive symptoms may also mark presymptomatic Alzheimer’s.
Is there anything I can do? For older adults with changes in mood or anxiety—either noticed by them or their family and friends—Dr. Gatchel advises they discuss their primary care physician, psychiatrist or geriatric medicine specialist about their symptoms and whether they might be at higher risk for Alzheimer’s as a result. She also advises that patients work with these physicians to treat symptoms of depression and anxiety and promote mental and physical health.
“The relationship between Alzheimer’s and depression is quite complex,” says Dr. Gatchel. She sees better understanding of this area as a crucial unmet need for many patients and families.
To learn more about studies of Alzheimer’s and depression that are under way at Harvard and at Massachusetts General Hospital, call 1-617-643-5200 or 1-617-643-0143.
Listen below to hear the full discussion about Alzheimer’s and mental health.
For National Minority Health Month, our April Alzheimer's Talks focused on a first-of-its-kind study that used tailored text messaging to boost Alzheimer’s knowledge in African Americans—who are up to three times more likely than non-Hispanic whites to get Alzheimer’s. Do the findings point to ways to improve health information-seeking and health literacy about Alzheimer’s among high-risk communities of color?
Stephanie Monroe, Executive Director of our AfricanAmericansAgainstAlzheimer's network, spoke with Karen Lincoln, PhD, about her pioneering work testing the effects of different health education approaches on Alzheimer's knowledge and attitudes. Dr. Lincoln is Director, Hartford Center of Excellence in Geriatric Social Work; Associate Professor, Suzanne Dworak-Peck School of Social Work; and Founder, Advocates for African American Elders at the University of Southern California. Much of her work focuses on outreach and engagement with aging adults in underserved communities—on health literacy and generating knowledge to improve health.
Connecting Knowledge & Health Behaviors
Dr. Lincoln notes that health literacy is generally low among African Americans: many do not seek health information, have fewer information sources, and have limited access to the Internet. These barriers may worsen the burden of Alzheimer’s and dementia in this community. However, African Americans are more likely than others to seek health information using their cellphones. These characteristics sparked the idea for a unique research project.
Her 2017 pilot study, BrainWorks, was the first of its kind to use culturally tailored, daily text messages among African Americans to try to raise knowledge levels about Alzheimer's and begin to change attitudes about Alzheimer’s research.
Her team filled the study in just six weeks, thanks to long-standing relationships with senior centers, senior housing communities, churches and social groups. From a local community with many older, low-income residents, they enrolled 235 African Americans aged 45+.
One group in the study received printed materials about Alzheimer’s. One received daily texts with general-population Alzheimer’s information: More than 5 million Americans have Alzheimer’s; Alzheimer’s is the fifth leading cause of death in Americans. The third group received culturally tailored daily text messages: Alzheimer’s is the fourth leading cause of death among African Americans; African Americans are 2-3 times more likely to get Alzheimer’s; every shut-eye ain’t sleep. An advisory board of African American seniors helped ensure the texts’ cultural relevance and appropriate reading level.
Alzheimer’s knowledge improved in all groups but improved most in the group who received culturally tailored texts.
Focus groups held in the study identified fears of Alzheimer’s and of research—fears of being “experimented on” and that African Americans might be treated differently than whites in a research study. The culturally tailored text messages helped address this general mistrust of research, as did the African American research team.
To build on this study’s findings, Dr. Lincoln plans an expanded study to see if more knowledge leads to more conversations with doctors—replacing Alzheimer’s fear with knowledge, empowerment and being proactive. Her promising results could lead to more effective education efforts, using innovative technology approaches to address disparities in Alzheimer’s.
Listen to the full conversation, below.
Demystifying clinical trials was the topic of our March Alzheimer’s Talk—how they work, what you need to know and why they’re important. UsAgainstAlzheimer’s Board Member and Author/Caregiver Advocate Meryl Comer moderated an insightful discussion with:
- Reisa Sperling, MD, Harvard neurology professor and project leader of the NIH-funded A4 Study, a first-of-its kind prevention trial in older adults with evidence of early Alzheimer’s but no symptoms
- Geri Taylor, who is living with early-stage Alzheimer’s and participating in a clinical trial, and Jim Taylor, her husband and care partner—both were profiled in a 2016 New York Times article
- Nate O’Keefe, Founder and CEO of Roobrik, which worked with UsAgainstAlzheimer’s to develop a decision tool, Is Clinical Research Right for Us?
Should You Join a Clinical Trial?
As Nate observes, “Almost no one is innately equipped to make an informed decision about this.” You may not be aware of all of the clinical trial options; you may be uncertain about whether changes you’ve noticed are serious, or inertia may keep you from taking the first step. A decision tool, like Roobrik’s, can help. It walks you through questions that can help you understand what kinds of studies might be a good fit for you. Nate says, “Whether you’re the ‘worried well’ or recently diagnosed with Alzheimer’s, this process can empower you to take action. Even taking this small step is an act of heroism.” The decision tool report can help guide a discussion with your doctor and family about clinical trials.
Finding the Right Study
Geri had used TrialMatch to look for studies. Then Jim saw a news article about a Biogen study that seemed just what she wanted – an FDA-approved, double-blind interventional trial. While that meant she might get a placebo instead of an experimental drug, as Jim says, “If you don’t join a clinical trial, you’re on the placebo the rest of your life.”
Dr. Sperling notes that Alzheimer’s clinical trials are getting longer because scientists are trying to intervene earlier, so they follow patients for longer timeframes. To gather such long-term data, researchers try to make it easy to stay enrolled for years—offering more satellite locations, for instance.
Not all studies mean taking an experimental drug. Online studies, phone studies, caregiver studies and others all may help find treatments or better support for families.
Another resource is Antidote’s clinical trial search tool.
Advantages of Being in a Clinical Trial
Jim says the advantages are many: learning more about Alzheimer’s, replacing fear with knowledge, which can lead to better decisions; receiving the very best medical care, since an expert study team follows your health closely; no costs to you (you may even receive a small stipend); an Alzheimer’s research team that knows better than anyone what you’re going through and can answer your questions; and the psychological advantage, the mood boost, of taking action to help find a cure.
Fears & Obstacles
- I don’t want to know: Most Alzheimer’s trials require that you learn your genetic risk or amyloid status. (The DIAN Study does not.) Dr. Sperling sees knowledge as power: “People are scared to know because they think there’s nothing they can do. Clinical trials are a way that you can be proactive—hopefully to help find a successful treatment for you and others in your family. Many are willing to learn their status if they can do something positive with that knowledge.”
- I live far from research centers: TrialMatch sorts by distance. Look for telephone or online studies via ClinicalTrials.gov. Find studies funded or run by the National Institute on Aging at NIH. Search for options through Cleveland Clinic’s Healthy Brains or the Memory Strings Community. Participate in online research: join UsAgainstAlzheimer’s A-LIST.
Will I Qualify?
- Family history: A close relative with Alzheimer’s is unfortunately a strong predictor for the disease. If you have family history but no symptoms, Dr. Sperling suggests a prevention study like the EARLY Trial or the Generation Studies.
- No diagnosis or family history: Dr. Sperling say you can still be of value to a clinical trial. As trials look at earlier stages of Alzheimer’s, more will seek healthy people in their 60s or 70s. Consider signing up for the Alzheimer’s Prevention Trials Webstudy, Alzheimer’s Prevention Registry or Brain Health Registry.
Study Partner’s Role
An Alzheimer’s trial may require participation by a care partner. At some of Geri’s appointments, for instance, Jim shares observations of her cognitive status and functional abilities with the research team.
Knowing Why You Want to Join a Study
Nate emphasizes knowing why you want to join a study: “If you don’t acknowledge the ‘why,’ you may have trouble with smaller decisions along the way.” Motivations include the chance of a treatment/cure for you or a loved one, the hope of preventing disease, honoring a road traveled with a family member, or helping the world generally. Geri finds being in a trial empowering. Alzheimer’s also struck four of her family members, so she says, “For my family, myself and others, I want to be in this fight.”
Hear more questions from listeners and answers from our panelists. Listen to the full conversation below -- or follow Alzheimer's Talks through iTunes Podcasts.
For our January Alzheimer’s Talks, Brooks Kenny, Executive Director of our WomenAgainstAlzheimer’s network, spoke with Dr. Richard Isaacson, founder of the Alzheimer’s Prevention Clinic at NewYork-Presbyterian/Weill Cornell Medical Center. Joining him was Karen Segal, an UsAgainstAlzheimer’s board member who is participating in a research study Dr. Isaacson is leading.
Karen shared her experiences as an Alzheimer’s care partner to her mother and her reasons for joining the study. Dr. Isaacson’s discussed his exciting work helping patients reduce Alzheimer’s risk and his research into lifestyle changes to prevent or delay Alzheimer’s, including a study of Alzheimer’s in women, seeking brain changes that occur long before symptoms do.
One in three cases of Alzheimer’s may be preventable: As with heart disease and stroke, we may never prevent all cases of Alzheimer’s, but you can reduce your risk. Alzheimer’s starts decades before symptoms appear, allowing lots of time to take steps to prevent or delay symptoms. (For the other two of three cases, if we can delay it even a few years, an effective treatment may be available then.)
Lifestyle changes can reduce your risk. Your genes are not your destiny. Modifiable risk factors include diet, exercise, sleep, stress reduction, cognitive engagement, and management of diabetes and heart health. In recent studies, even those with higher genetic risk could delay or prevent cognitive decline through nutrition, exercise, cognitive exercises and managing heart health.
Women, menopause and Alzheimer’s—what’s the connection? Two of three people with Alzheimer’s are women, and it’s not just that women live longer. Dr. Isaacson is studying changes in brain metabolism before, during and after menopause that may offer clues.
Clinical trials put you in the driver’s seat. Karen Segal shared her experience as a participant in Dr. Isaacson’s study: regular bloodwork, cognitive testing, brain imaging, and diet and exercise monitoring. She knows current research can’t save her mother, who has had Alzheimer’s for 15 years, but it may save younger generations: “The first person cured of Alzheimer’s will be in a clinical trial.”
RESOURCES SHARED DURING THE CALL
Alzheimer’s Universe: www.alzu.org Learn more about prevention, treatment, caregiving. Free online lessons & activities. Created by Weill Cornell Medicine, NewYork-Presbyterian and many researchers.
Alzheimer’s Prevention Clinics:
Alzheimer’s Prevention Clinic, NewYork-Presbyterian/Weill Cornell Medical Center, New York, NY
Alzheimer’s Risk Assessment and Intervention Clinic, Univ. of Alabama at Birmingham, Birmingham, AL
Alzheimer’s Prevention Program, Loma Linda University Medical Center, Loma Linda, CA
Center for Brain Health, NorthShore University Health System, Chicago, IL
For our December Alzheimer’s Talks, UsAgainstAlzheimer’s Chairman and Co-Founder George Vradenburg spoke with Lakelyn Hogan, a gerontologist and caregiver advocate at Home Instead Senior Care, where she educates professionals, families and communities on issues that older adults and their families face. At HelpForAlzheimersFamilies.com, visitors can sign up for Lakelyn’s free weekly email, with advice, resources and inspiration from a community of 40,000 caregivers.
This month’s topic was making the holidays enjoyable when a loved one has Alzheimer’s or dementia. Lakelyn offered many tips for families to find joy in this season.
Involve your loved one: Engage your loved one in holiday traditions and festivities. Modify some activities so they can participate. Have other family members help them with decorating, baking or hosting.
Keep everyday routines: Many with Alzheimer’s find a daily routine comforting. Be respectful and stick to their schedule if possible. Adjust times for holiday gatherings and meals so they can keep their routine.
Adapt: Be prepared but flexible. Allow extra time to prepare for outings. Bring your loved one’s favorite music, snacks or activity to gatherings away from home, so they can enjoy something familiar.
Help them reminisce: Many with Alzheimer’s or dementia have sharper long-term memories. Look at family photo albums together. Ask them their memories from past holidays and document their recollections. If they cannot communicate, share your holiday memories.
Use the senses of the season: Engage the senses to help your loved one experience holiday joy. Make treasured family recipes to create familiar scents. Play classic holiday songs or movies, or read religious texts to them.
Make the most of time together: Use this family time to discuss caregiving roles and your loved one’s wishes for the future. If tension or conflict exists, this time can promote forgiveness or healing; a geriatric care manager may be able to help. Give the primary caregiver some respite time to take care of themselves.
Look for signs of cognitive decline: Holiday visits with older relatives offer a chance to observe signs of cognitive decline. Note the condition of the home, the car, their personal appearance, and of their skills around the house.
Thank you to Lakelyn Hogan for great advice on making the holidays happy when a loved one has Alzheimer’s or dementia. To learn more, you can listen to an audio playback or read the transcript of the conversation.