Breaking Through: Alzheimer’s Disease Across Cultures
National Alzheimer’s Buddies hosted their third annual Virtual Symposium: Breaking Through Alzheimer’s Disease Across Cultures, this past November which highlighted the similarities and differences of experiences for those who suffer from Alzheimer’s disease and related dementias (ADRD) across cultures.
Jillian Lee, the CEO of National Alzheimer’s Buddies, opened the forum by introducing herself and National Alzheimer’s Buddies’ mission of helping to alleviate the social and emotional challenges that those with Alzheimer’s disease faced by pairing dementia patients “Buddies” with college volunteers. She went on to state how college volunteers build relationships with the individuals with Alzheimer’s disease by engaging residents to help them overcome the daily social and emotional challenges of Alzheimer’s disease. She introduced the theme of this symposium as “Alzheimer’s Disease Across Cultures.” With the growing prevalence of Alzheimer’s disease nationally, Jillian discussed how it is critical to bring awareness of Alzheimer’s disease on a global scale.
Jillian then introduced the keynote speaker, Dr. Maria Teresa Ferretti, a neuroscientist and neuroimmunologist and an expert in Alzheimer’s disease and gender medicine. She is a co-founder of Women’s Brain Project where she currently serves as a Chief Scientific Officer based in Switzerland. She provided a European perspective on Alzheimer’s disease. Due to unforeseen circumstances, she was unable to attend a live session, but prerecorded her keynote address.
Keynote Speaker: Dr. Maria Ferretti
Dr. Maria Ferretti began by recognizing National Alzheimer’s Buddies impact in the community by training college volunteers to see the person beyond their diagnosis of Alzheimer’s disease. Dr. Ferretti expressed her appreciation for the work National Alzheimer’s Buddies is doing and how it resonates with her and the work she does on the Women’s Brian Project. She emphasized how every patient and person with AD is different and that is why a precision medicine approach is vital to individualize the needs of the person. Dr. Ferretti is part of a group of scientists working together for the Women’s Brain Project.
Dr. Ferretti took the time to recognize Sofia, a Women’s Brain Project ambassador, and a brilliant woman who had been diagnosed with a genetic form of Alzheimer’s disease at a very young age. Dr. Ferretti discussed Sofia’s story and struggles surrounding a new diagnosis of Alzheimer’s disease at the same time she was caring for her two teenage daughters. Sofia shares the story of her life with her blog posts on the Women’s Brain Project website. Her stories have been inspiring others to understand a woman's perspective of being a caregiver and opened the minds of researchers to improve diagnostic approaches in women.
Dr. Ferretti emphasized how there are biological differences in men and women and how new research is providing evidence to support sex differences in Alzheimer’s disease management. “From the very early stages of noticing the first symptoms…who picks up in the family what’s happening, it’s mostly the women (spoiler), but also that the journey, what doctor you decide to go to, how long it takes for you to have the diagnosis, what type of treatment you are recommended can be different for men and women” said Dr. Ferretti.
“From the very early stages of noticing the first symptoms…who picks up in the family what’s happening, it’s mostly the women (spoiler), but also that the journey, what doctor you decide to go to, how long it takes for you to have the diagnosis, what type of treatment you are recommended can be different for men and women”
Dr. Ferretti’s message to everyone was, “if you are a man or a woman with Alzheimer’s disease, it makes a difference, your whole experience as a patient is different and we think that this is something medicine should take into account, so families should be aware of this, doctors should be aware of this and companies that are working to develop solutions for improving the lives of people living with Alzheimer’s should be aware of this because we need tailored and personalized” care. She explained how precision medicine prevents pooling people with different types of dementia and identifies the differences in individuals to improve care.
Part 1: Global Perspective
Next, the International Panel was introduced consisting of four specialists from different continents who shared their international perspective of Alzheimer’s disease across cultures. The panelists included Dr. Raphael Castilhos from Brazil (South America), Dr. Manjari Tripathi from India (Asia), Dr. Celestino Obua from Uganda (Africa), and Dr. Darshini Ayton from Melbourne (Australia).
Dr. Raphael Castilhos Brazil (South America)
Dr. Celestino Obua Uganda (Africa)
Dr. Manjari Tripathi India (Asia)
Dr. Darshini Ayton Melbourne (Australia)
The first panelist question was directed towards Dr. Castilhos regarding the differences in lifestyles in Brazil and how it contributes to outcomes. He stated that many people with dementia in Brazil have complicated courses of care since there is little guidance within their healthcare system. Dr. Castilhos discussed how most of the population is poor and there are no nursing homes available, thus many are cared for in their homes which increases the burden for caregivers.
“[There is a] lack of understanding about the condition, most people in India feel that it is normal to decline in memory and many other functions… as we age. ”
The next question was aimed at Dr. Tripathi regarding the future potential changes and type of care surrounding the stigma for Alzheimer’s disease in India and how over 90% of people who have Alzheimer’s disease are not receiving a diagnosis. She stated that this information is due to a “lack of understanding knowledge about the condition, most people in India feel that it is normal to decline in memory and many other functions… as we age”. For those who do have cognitive deficits “they don’t recognize it as a disease” she said. Thus, those who suffer from dementia are isolated due to this stigma and are often not getting the care they need.
Dr Obua answered the next question on how pharmacological advances in Alzheimer’s disease treatment complement care in Africa. He replied by recognizing how there is no cure to Alzheimer’s disease, but the treatments that slow the progress of the disease are not always available to his patients. He went on to say how there is no formal care, including institutionalized care, for those with Alzheimer’s disease in Africa. Dr. Obua reiterated that “most of the time patients are treated by family members at home, but they only realize there is a problem when the cognitive impairment has become very severe.” He recognized that women are more likely to suffer from Alzheimer’s disease and are also the caretakers of those who have Alzheimer’s disease. Dr. Obua said that many of the caretakers are wives, daughters, or sisters.
To improve access to care, Dr. Tripathi stated that, in India, a local care provider could take a thorough history and complete a telemedicine visit with a specialist who could offer a workup, diagnosis, and treatment. She noted that there is a helpline to counsel patients on the telephone.
“Most of the time, it is believed it is a spiritual illness or witchcraft, and so the formal care is not able to treat diseases of witchcraft or spiritual nature.”
Dr. Obua discussed how a diagnosis of dementia in Africa is typically a secondary diagnosis based on other primary concerns for hospitalization. The relatives of those with dementia do not have faith in formal care and “most of the time, it is believed it is a spiritual illness or witchcraft, and so the formal care is not able to treat diseases of witchcraft or spiritual nature” , said Dr. Obua. He went on to say how those who have dementia are taken to either churches or traditional care providers for treatment. To improve the recognition of dementia and create a formal process of care, Dr. Obua recommended that healthcare workers be trained using the World Health Organization (WHO) dementia toolkit.
From Brazil, Dr. Castilhos added that medication treatment for Alzheimer’s disease is available, but the distribution to the public is not equal. He commented how the richest part of the state is receiving these treatment drugs, but the poorest parts are not receiving them. “The distribution of drugs are marking the diagnostic capacity of this region,” said Dr. Castilhos.
“The distribution of drugs are marking the diagnostic capacity of this region.”
Dr. Obua concluded that it is very important for the rest of the world to create a standardized way to provide care for those with neurocognitive impairment in Africa. He also stated that there needs to be a form of action to retain the neurologists who are properly trained in Africa instead of them being moved to Western medicine facilities.
Part 2: United States Perspective
The next part of the forum included the United States’ based panelists consisting of Dr. Pei-Jung Lin, Dr. Ganesh Babulal, and Dr. Diana Kerwin.
Dr. Pei-Jung Lin United States
Dr. Ganesh Babulal United States
Dr. Diana Kerwin United States
From a health economics perspective, Dr. Lin reported how new therapies are targeting early stages of Alzheimer’s disease for the treatments to be effective. Therefore, a timely diagnosis is key. The United States was recognized to have similar challenges to other countries in that it is difficult to obtain an early diagnosis. She recommended having primary care providers recognize Alzheimer’s disease in the office at an early stage and refer out appropriately. Dr. Lin elaborated on how insurance payers affect the medication treatment options for patients with Alzheimer’s disease and stated that “different payers make different decisions.”
A question was asked about the difference in patient responsiveness to drugs. Dr. Kerwin emphasized the importance of using a diverse population for drug trials to learn why some people may respond better to certain medications. They are still evaluating the response of medications based on individual characteristics, especially noting safety concerns for those with genetic mutations and potential medication interactions. Some people who have the genetic mutation, APOE4, respond differently to the anti-amyloid monoclonal antibodies. Dr. Kerwin continued by commenting how more data is required to see responsiveness to these therapies.
Dr. Babulal said “we know by mid-century, the year 2050, the United States will become significantly more diverse” which is important because there are already significant disparities in health care access, especially for those who were Hispanic, Black, or Native American. He noted that in these populations, they were not seeking care for Alzheimer’s disease. He highlighted how these disparities have been compounded over decades.
“We know by mid-century, the year 2050, the United States will become significantly more diverse.”
“Using the National Survey data linked with health insurance claims data, and we see that Blacks and Hispanics, for example, are less likely to have a formal diagnosis of Alzheimer’s, and when they are diagnosed, they tend to have more severe Alzheimer’s, meaning they have worse cognition and more functional limitations at the time of diagnosis, so that really suggests the kind of delay in getting Alzheimer’ care” said Dr. Lin. Moreover, she noted that racial and ethnic disparities are not just unique to Alzheimer’s disease, but it is seen in other diagnoses, such as cancer.
Dr. Kerwin commented on the difficulties with obtaining an early diagnosis for those with a lower socioeconomic status and in racial minority groups. She also commented how other co-morbidities such as uncontrolled hypertension and diabetes can lead to a higher risk of developing Alzheimer’s disease. She reported how she is working on addressing individual risk reduction in these populations to improve their care and quality of life.
“Roughly 40% of disease outcomes are intervenable starting from early childhood education to mid-life. ”
Precision medicine and preventative medicine is crucial per Dr. Babulal. He emphasized that “roughly 40% of disease outcomes are intervenable starting from early childhood education to mid-life”. Therefore, he reported that precision medicine is needed to address care for our population.
A question was raised on what can be done for a loved one to support them for men versus women. Dr. Kerwin commented how it is important to be aware of the diagnosis. She stated that exercise has been found to be one of the most critical aspects in slowing the progression and possibly delay of the onset of Alzheimer’s disease. Dr. Kerwin mentioned that a Mediterranean diet and DASH diet has been found to decrease the risk of Alzheimer’s disease. Although she noted there are not a lot of gender differences in clinical practice regarding treatments, women are known to be more affected by Alzheimer’s disease. Dr. Babulal added how cognitive stimulation, socialization and caregiver support has been found to be helpful in care.
“Lifestyle modifications with physical activities and control of co-morbidities could mitigate almost half the diagnosis of Alzheimer’s disease.”
To support these ideas, Dr. Castilhos remarked how preventable measures in Brazil including lifestyle modifications with physical activities and control of their co-morbidities could mitigate almost half the diagnosis of Alzheimer’s disease.
Dr. Darshini Ayton from Australia works on preventative medicine for Alzheimer’s dementia. She reported that providing the option for home care in Australia is important to many patients and caregivers. Dr. Kerwin added how she wishes there was more emphasis on community interventions to promote healthier lifestyle and socialization to prevent disease.
Student volunteers asked about ideas for becoming more culturally competent in caring for those with Alzheimer’s disease. Dr. Ayton commented how it is important to make someone who has Alzheimer’s disease feel like a person and not like someone with Alzheimer’s disease. She recommended learning from conversations and brought up the idea of using the 5 senses including sights and smells regarding memories of the past to help orient the person. Dr. Babulal added to this by saying students should volunteer at several different locations to increase their awareness and tailor their approach by interacting with different families to help reduce bias.
“Alzheimer’s or dementia is one area that has not been taken seriously even in our health system. ”
Concerns about caregiver’s stress were brought up, as well. Dr. Lin mentioned how there needs to be more resources for caregivers. Dr. Tripathi reported how there needs to be more awareness surrounding the caregiver’s burden and more training for volunteers and healthcare providers to address this. Dr. Kerwin recommended having caregivers notify their healthcare provider so they can recognize and address the substantial impacts on the caregiver’s health so that the caregiver can better assist their loved one with Alzheimer’s disease.
A roundtable question was raised for how to navigate misconceptions about the diagnosis of Alzheimer’s disease. Dr. Tripathi recommended educating the patient and caregiver on how Alzheimer’s disease cannot be cured at this time. Dr. Babulal commented that there is a stigma surrounding Alzheimer’s disease where it impacts both patient and family, therefore, education needs to be provided. Dr. Kerwin explained how dealing with the misconceptions of the disease can be very challenging and can take years of seeing a patient before this information sinks in. Dr. Castilhos reported that, in Brazil, there is a stigma that Alzheimer’s disease is a normal part of aging which can complicate the treatment plan.
To close the symposium, the panelists made their final remarks. Dr. Kerwin commented how the National Alzheimer’s Buddies symposium is a great way to keep communications open to create a ripple effect impact in treating Alzheimer’s disease. Dr. Ayton recommended having more people volunteer to create a community that will help prevent the stigma surrounding Alzheimer’s disease.
Dr. Babulal brought up several national organizations who provide up to date information surrounding Alzheimer’s disease, including:
The Alzheimer’s Disease Association’s Annual Report
Alzheimer’s Disease International World Reportand
World Health Organization’s first ever blueprint on dementia research.
National Alzheimer’s Buddies thanked their panelists for their informative discussions and thanked all the others involved in bringing the third annual symposium to life.