NAB 2022 Virtual Symposium

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. Maria Ferretti

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. ”

— Dr. Manjari Tripathi

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. Celestino Obua

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. Raphael Castilhos

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.”

— Dr. Ganesh Babulal

“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. ”

— Dr. Ganesh Babulal

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.”

— Dr. Raphael Castilhos

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. ”

— Dr. Celestino Obua

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.

Check out the recording of the symposium below!

Early Signs and Symptoms of Alzheimer’s Disease

Early Signs and Symptoms of Alzheimer’s Disease

Do you ever find yourself forgetting someone’s name or not remembering why you went into the other room? Don’t worry, not everyone who is forgetful has signs of Alzheimer’s disease. We live in a fast-paced world and get distracted with our thoughts.

However, it is important to recognize early signs and symptoms of something more concerning, such as Alzheimer’s disease. Alzheimer’s disease is a progressive disease, and at first, it presents with subtle changes. It has a genetic aspect to it, therefore, if you have dementia in your family, you may worry about developing this disease. It is important to talk to your family about your concerns because your family and close friends may recognize subtle mental status changes before your healthcare provider.

The Alzheimer’s Association recognizes common early signs and symptoms of Alzheimer’s disease

including:

1. Memory loss. This could be forgetting a wedding anniversary or upcoming birthday.

2. Problem solving challenges. This includes forgetting how to do simple math calculations.

3. Problems with completing routine daily activities. For example, forgetting how to take daily medications.

4. Place and time identification. People could start forgetting what year it is.

5. Visual image changes. Some may have problems with driving at night due to difficulties with differentiating colors and contrasts.

6. Speech or writing changes. This includes getting side-tracked in conversations and forgetting the next part of telling a story or repeating themselves. Some may not be able to draw a clock with the hour and minute hands.

7. Misplacing items. This includes placing items in strange places, such as putting keys in the refrigerator.

8. Altered judgment. Some may have a decrease in personal hygiene, such as forgetting to shower/bath routinely.

9. Social changes.  People may have difficulties engaging in their previously enjoyed activities and become more withdrawn.

10. Personality or mood changes. Irritability is a common symptom when the routine is thrown off.

You may wonder what the difference is for normal age-related changes and dementia. It typically comes down to how often these changes occur and their severity. Forgetting things occasionally and then remembering it later is not a typical symptom of dementia. Yet, if you are having trouble sustaining a conversation, that would be more concerning.

In my personal experience as a healthcare provider, I have seen a wide range of presentations. I have seen avid sport’s lovers give up their passion for coaching due to speech difficulties. The embarrassment of not feeling competent enough to communicate with the team led to them leaving their coaching profession. They, soon, realized that their speech was not from aging, but due to Alzheimer’s disease.

Others have presented with difficulties of word finding for items they commonly use, which brings a great amount of frustration. Not being able to carry on a conversation with a spouse or best friend can be heartbreaking and can lead to a withdrawn behavior.

For my grandfather who had severe Alzheimer’s disease, his presentation started in his early 70s. He was a very diligent man who was detail oriented in tasks. One day, he helped my sister move to her new apartment by loading up his pickup truck with bins of her belongings. When they arrived at her new home, they noticed a couple of bins missing from the truck bed, along with the tailgate open. My grandfather then realized he forgot to close the tailgate. Situations like this can happen to anyone, even those who do not suffer from dementia. However, there were many incidences of his neurological decline that occurred over the years.

If you are having any of these signs and symptoms, please consult your healthcare provider about your concerns. They may consider performing a mini-mental exam, labs, and consider a neurology referral for a further workup. Early detection is important in providing treatments that can slow down the progression of dementia and provide additional resources that may be needed. Good communication to family and friends is vital to ensure all needs, wishes, and fears are heard. Some people may want to ensure they have “all their ducks in a row” meaning having an updated living will, advance directives, Health Care Proxy and power of attorney in place.

By Michelle Flanagan

Medical Disclaimer:

The information on this site is for informational purposes only. It is not intended or implied to be a substitute for professional medical advice, diagnosis, or treatment. Please seek help from a healthcare professional, if needed.

References

Alzheimer’s Association. (2022). 10 early signs and symptoms of Alzheimer’s. https://www.alz.org/alzheimers-dementia/10_signs

Women’s History Month: The Battle Against Alzheimer’s

In honor of women’s history month, I would like to take the time to recognize the 11 million women who have been affected by Alzheimer’s disease in the United States. This includes both caregivers and people who suffer from Alzheimer’s disease. 

Did you know

• Alzheimer’s disease affects more women than men with women accounting for two-thirds of those diagnosed.

• Women have an estimated lifetime risk of 1 in 5 for developing Alzheimer’s disease at age 65. 

• Women are 2.5 times more likely than men to live with someone with Alzheimer’s disease.

• A woman's health is more affected by caregiving tasks than men, such as the extent of depression may be worse for women.

• 19% of dementia caregivers had to leave their job since the burden of caretaking was too great.

Why do women have a greater chance of developing Alzheimer’s disease?

• Some researchers suggest that women are at greater risk of this disease due to their longer life expectancy than men, life experiences, genetic make-up, or other biological differences. 

• One study evaluated the incidence rates for Alzheimer’s disease from 16,926 men and women in the Swedish Twin registry and found that there was a significant difference in diagnosis of Alzheimer’s disease for women over the age 80. This was thought to be related to longevity differences between men and women.

• Another study revealed little difference in age-specific incidence rates in each sex until after the age 90. At that time, women were more likely to have a diagnosis for Alzheimer’s disease than men.

• In addition to longevity differences, another study reviewed sex differences for Alzheimer’s disease and discovered that the drop of estrogen levels could impact neurological decline in women. Estrogen may have neuroprotective properties that help metabolize amyloid; a toxic plaque that is found in those with Alzheimer’s disease. Further studies are needed to see if hormone replacement therapy can assist in decreasing risk for Alzheimer’s disease. 

• Moreover, this study explored structural and functional differences between men and women. They describe how men have larger brain volumes and slightly more white matter while women have slightly more gray matter.4 Women with Alzheimer’s disease have been found to have greater brain atrophy, a larger amount of brain tangles and plaques, and a smaller hippocampal volume than men. The hippocampus is vital for learning and memory. It is unclear if the increased atrophy for women is due to anatomical differences. 

• The APOE4 gene has been shown to be the strongest genetic risk factor for Alzheimer’s disease. One study found that Caucasian women who were heterozygotes with one APOE4 gene and one APOE3 gene (most common Alzheimer’s disease gene) were more likely to develop Alzheimer’s disease than men. Therefore, there may be sex-specific genetic differences, however, there was a lack of evidence to generalize this to other races.

Recognizing some well-known women who have suffered Alzheimer’s disease:

• Rita Hayworth- Starting in the 1940s, she became a famous actress and was well-known as “The Love Goddess” due to her stunning beauty. Sadly, she developed Alzheimer’s disease in the 1980s and passed away in 1987 at age 68. Her diagnosis created awareness of Alzheimer’s disease, which was not a well-known disease at that time.

• Rosa Parks- She was one of the most well-known American civil rights activists for refusing to give up her seat on the Montgomery bus. Her courage helped initiate the United States’ Civil Rights Movement and created awareness of equality to minority groups. At age 92, she passed away from Alzheimer’s disease.

• Pat Summit- As the head coach for the University of Lady Vols, she was known for her team’s impressive records. By her retirement, she achieved the most career wins in women’s basketball history and won eight NCAA championships. Sadly, she developed early-onset Alzheimer’s disease and needed to retire at age 59.

• Evelyn Keyes- As a famous actress, well-known for her roles in Gone with the Wind and The Seven Year Itch, she developed Alzheimer’s disease in the 1990s and passed away at age 91.

A few non-profit organizations that support and create awareness to the disparities of women diagnosed with Alzheimer’s disease: 

1. The Women’s Brain Project

2. UsAgainstAlzheimer’s

3. Women and Alzheimer’s- Cure Alzheimer’s Fund

4. The Women’s Alzheimer’s Movement (WAM)

This month, please take the time to recognize and support all the women who suffer from Alzheimer’s disease and the caretakers of those who have dementia. Further research is needed to understand why women are disproportionately affected by Alzheimer’s disease. Hopefully, in time, we will be one step closer to a cure. Please consider supporting our non-profit organization, as well as others who have the same mission. 

By Michelle Flanagan

References

1. Alzheimer's Association: Women and Alzheimer's

2. Differences Between Women and Men in Incidence Rates of Dementia and Alzheimer’s Disease

3. Incidence of dementia: does gender make a difference?

4. The puzzle of sex, gender and Alzheimer’s disease: Why are women more often affected than men?

5. Sex Differences in the Association between AD Biomarkers and Cognitive Decline

6. Effects of Age, Sex, and Ethnicity on the Association Between Apolipoprotein E Genotype and Alzheimer Disease

7. Famous People With Dementia

Alzheimer’s Disease: Being Mindful About Caregiver’s Stress

It was 3 am and my parents heard their bedroom door knob rattle, the lights flickered on, and someone asked “is anyone in there?” Little did they know, this was going to be Grandpa’s nightly routine. If you ever lived with someone who has Alzheimer’s disease, you may have experienced this same situation. The Alzheimer’s Association found that caregivers of people with dementia lose about 3 hours of sleep per week, however, I believe this is an understatement in some households. It is easy to see how quickly the strain of caring for someone you love can spiral into complete exhaustion.

Caregiving for those with Alzheimer’s disease can be extremely stressful and can affect our emotional and physical well-being. In addition to this, there is the financial burden for the extra services that may be needed to help care for them. A diagnosis of Alzheimer’s disease for a loved one is so much more than another chronic illness. Regardless of the extent of the disease, it can cause caregivers to have mood changes, fatigue, and social isolation. The Alzheimer’s Association reports that almost 75% of caregivers are concerned about their own health status and feel they have a lower quality of life than those who are not caregivers. This stress can lead to increased risk for chronic illnesses such as hypertension, heart disease, and poor immune function. Since there is no cure for Alzheimer’s disease, the progression of this disease can only exacerbate these negative effects.

         Each type of caregiver has their own, unique relationship to the person with dementia. Whether you are a spouse, child, close friend, healthcare provider or volunteer, caring for someone with memory loss is challenging. It is unimaginable seeing your spouse deteriorate over time. You think back to your wedding vows “in sickness and in health” and never believed that you would have to care for your spouse who may not even remember your name or your child’s name. My Grandpa had severe Alzheimer’s and my Nonnie would get so hurt that he could not remember who “Vinny” was, which was their only son. One time, Nonnie asked Grandpa to get Vinny in the other room. Grandpa proceeded to go into the kitchen and look at my parents and say “is there anyone with the name Vinny here?” There was so much pain in all their faces. It is no wonder why there is an increased risk of depression for caregivers.

         Children of those with Alzheimer’s suffer somewhat differently. They see someone so capable in their years, yet, now they are “parenting” their parents. As we age, we tend to regress to child-like behaviors: diapers return, and we need someone to take care of us 24/7. I remember we had to “childproof” our home by removing all the gas stove knobs, zip-tie the cabinets and lock any doors that may potentially cause harm.

         Safety concerns are also an issue for healthcare workers in nursing homes. They are providing direct care for those with dementia and feeling the strain of being overworked and understaffed. It is not reasonable to care for 20+ patients per shift and have that be the normal daily routine. Healthcare provider burnout directly impacts these workers and is the reason why there is such a high turnover rate in these types of facilities. The Alzheimer’s Association recognizes about 2/3 of nursing assistants are leaving their jobs yearly due to these staffing challenges. At what point do we create a universal safety culture for both patients and healthcare providers? Improving care and increasing resources for caregivers may help decrease the burden of caregiver’s stress.

         Community resources, such as National Alzheimer’s Buddies, can help alleviate some of the burden from caregivers by providing additional support from college students. To further improve stress, the Alzheimer’s Association has several recommendations for self-care. Some of these include deep breathing exercises to promote relaxation, increasing physical activity, improving healthy eating habits, taking advantage of any respite care available, and making light of the changes by finding humor in the situation. When thinking of humor, it is not laughing at the person with dementia but laughing at ourselves in the extreme measures we may need to do to protect our loved one. There is also finding humor in the stories told by someone with Alzheimer’s. Grandpa would tell stories of his childhood memories and included the names Mario and Luigi. To our knowledge, these people did not exist in his life, but they were the names of the Nintendo characters he heard from the video games in our home. It brought a smile to our face, even in the most difficult times.

         If you are a caregiver, please remember, you are not alone in the struggles surrounding Alzheimer’s disease, but some of these interventions may be helpful for coping. You never know, a 10-minute walk or 15 minutes of meditation may be all that you need to get through the day.

Medical Disclaimer:

The information on this site is for informational purposes only. It is not intended or implied to be a substitute for professional medical advice, diagnosis, or treatment. Please seek help from a healthcare professional, if needed.

References

Alzheimer’s Association. (2022). Alzheimer’s disease facts and figures. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf

Alzheimer’s Association. (2023). Caregiver stress. https://www.alz.org/help-support/caregiving/caregiver-health/caregiver-stress

Introducing Michelle Flanagan

Introduction

Hello, Everyone! My name is Michelle Flanagan and I am very excited to be working alongside National Alzheimer’s Buddies.

As a professional with over 10 years of experience in a wide variety of healthcare settings, I have always wanted to contribute to the Alzheimer’s community. In my past four years working as a nurse practitioner in primary care, I have witnessed many patients and their families struggle with this detrimental diagnosis. I have first-hand experience of what it is like seeing a loved one decline over time and the burdens that surround this.

My grandfather, a Navy Veteran, was such a capable man. As a skilled bricklayer for over 30 years, his work ethic and skills were unmatched.  He was the “go-to guy” for helping his family and neighbors in need. Having built half of the chimneys in his neighborhood, anyone who met him would note his charming and charismatic personality which, luckily, never changed despite his diagnosis. Over time, we noticed subtle changes in his memory. He was not one to forget to close the tailgate on his truck or misplace his keys. As these minor mental mistakes began to become more significant, our family began to notice them more. What was once laughing about leaving his keys in the house turned into confusion and fear from not knowing what street he was on in the very same neighborhood he spent 50 years raising a family in. 

After several years, the disease took over the majority of his short-term memory. However, he could recall specific details about childhood memories. Because his stories of his childhood were so colorful, neurologists did not believe his disease was that severe. As his disease progressed, the stories had their own variation each time, and we never knew what the ending would be. In some ways, it kept our conversation interesting.

NAB hosts second annual virtual symposium

National Alzheimer's Buddies hosted its second annual virtual symposium this past November which focused on highlighting sex differences in dementia. The event featured two panels in an effort to highlight different dimensions of Alzheimer’s disease—an expert panel discussion followed by a round table discussion with family, advocates and caregivers. 

The symposium also featured two keynote speakers, Dr. Michelle Mielke from the Mayo Clinic and Dan Gasby, who was a co-founder of the B. Smith brand along with his late wife. Dr. Mielke introduced the audience to the topic of sex differences in dementia with a thorough presentation highlighting epidemiological data, discrepancies in risk factors, social influences, among others. Dr. Mielke brought attention to the fact that too few studies, at this point in time, examine sex and gender differences, especially among diverse populations. 

“There is a really serious need to examine risk factors and sex differences in more diverse cohorts,” Dr. Mielke said in her speech. 

Dr. Mielke also highlighted the importance of social interaction for reducing the likelihood of advanced progression of dementia. 

“Social engagement is really, really critical which is why what you are doing is so important.” Dr. Mielke said. “If you can get people to socialize and exercise and just stay as active mentally and physically, that's also very helpful.”

Following Dr. Mielke’s opening presentation was the expert panel which dealt with topics like caring for Alzheimer’s patients and areas in the industry that need improvement. The panel featured Dr. David Goldberg, a hospitalist and avid Alzheimer’s advocate, Dr. Joy Balls-Berry, an associate professor at Washington University in St. Louis who is involved in health disparities research, and Dr. Macie Smith, a licensed social worker and gerontologist. 

The panelists combined their personal experiences with caregiving and their expertise in the field of health care to contribute to a meaningful and enriching discussion. Dr. Balls-Berry discussed her experience serving as a caretaker for her mother and as a researcher in science. 

“The other thing that I found as a caregiver that has been really important to me, and I have also noticed this in my research, is making sure that I am taking care of myself,” Dr. Balls-Berry said. “Making sure that we take care of ourselves is just as important as well.”

Dr. Goldberg discussed interactions he has had with patients and how that has shaped his understanding of disparities in Alzhiemer’s care. 

“I think access to knowledge of available resources is something that is striking. Everytime I take care of someone who has Alzheimer’s, I talk with their family and ask ‘are you familiar with the Alzheimer's Association?’ and the answer, most of the time, is no, which is kind of crazy to me,” Dr. Goldberg said.

Dr. Goldberg mentioned that although he can equip patients and their families with the knowledge of these resources, actually being able to use the resources and get help is complicated by the structure of our healthcare system. 

Dr. Macie Smith, with her 20 plus years of experience, gave insight on how she has seen the healthcare system operate against Alzheimer’s patients.

“What I have noticed is that we operate in silos. You have the medical practitioners practicing under the medical model. You have the community advocates and social workers operating under the social model, and the information is not being shared. We do not have a comprehensive care practice,” Smith said in the panel.

Smith said that the person-centered approach to dementia care should be threaded throughout all models of care. The patient should be at the center of the discussion and treated as a person, rather than merely a care-receiver.

Other topics discussed in the panel included the lack of geriatric care physicians for the growing elderly population, financial accessibility issues in regards to care, and advice for caregivers to slow progression of the disease. 

The second part of the symposium was a roundtable discussion with family, caregivers, and advocates of Alzhiemer’s disease. The discussion featured Kris from @LifewithGrams, a caregiver and online influencer, Roxanne from @Wilson&Grandpa, an Alzheimer’s disease advocate, and Cheri Ballinger, a US Ambassador for the Women's Brain Project and TBI survivor.

Kris has been the sole caregiver for her grandma since 2017. She talked about how documenting the experience of caregiving online has changed her perspective on caregiving, and allowed her to build a platform for friendship and support. 

“In sharing our journey…over these past five years, [it's fulfilling] to hear other caregivers say that they learned so much from just seeing [me] and [my] grandma interact,” Kris said. “I am very fortunate to have started posting.”

Kris also talked about how important patience is as a caregiver. She encouraged all caretakers to try to understand the Alzheimer’s patients perspective by entering their world. 

Roxanne took care of her late grandfather with the help of her grandmother. She said she wished she knew about all the resources out there for Alzhiemer’s patients so that she could better care for her grandpa during his life. 

Through witnessing her grandpa’s disease, Roxanne learned that Alzhiemer’s is so much more than just losing your memories. 

“It’s going to affect their life in so many ways, and the [lives of] the caregiver and the family,” Roxanne said. “[Keep] in mind that your loved one even with Alzhiemer’s are worthy of dignity, privacy, respect and it is our responsibility to make sure they feel validated and that we don’t embarrass them.”

Cheri Ballinger talked about how NAB’s mission attracted her to this organization and inspired her to contribute. 

“Sometimes we get so caught up in the science, advocacy, and research, but what I love about Alzheimer's Buddies is the human element, that compassion and empathy aspect. You guys really are the answer for young people, and I think that it doesn't just help the Alzhiemer’s patients but it also helps the college students,” Ballinger said.

The discussion centered around ways to advocate for Alzheimer’s patients, personal stories in caregiving, and caregiver burnout. The panelists ended their discussion by giving meaningful advice to the audience.

“The quote that always comes to me is be kind to everyone because you don’t know what they are going through,” Ballinger said. “Whether that's the caregiver, whether that's the patient, whether that is someone in a wider circle. Don’t give in to being quiet about [the disease] and the stigma. We have to talk about it. It's so important.”

The event ended with a speech by our second keynote speaker, Dan Gasby. Gasby talked about his 28 year relationship with B Smith, his late wife. He emphasized his wife’s dynamics, her kindness, and her ability to accomplish great things. He talked about how he witnessed the progression of Alzhiemer’s in his wife and the impact it had on him. 

“Alzheimer’s comes on very slowly. Little things that make you go ‘what's going on?’...and [those things] become more and more prevalent. [My wife] was a person that could walk into a room and light it up with her presence…and smile, [but] that smile went from elevation to just a stare over a period of time,” Gasby said.

Gasby recounted his experience as a caregiver to his wife. He mentioned that the situation was so stressful that it caused him to lose his hair. 

“I gave my wife a promise that I would take care of her. As she said to me, way back when, if one of us became infirm we would take care of each other and then go on and live our lives. So, until the day she passed, I was there for her,” Gasby said.

Gasby said that all Alzheimer's Buddies volunteers are doing good and important work.

“Things in life that are challenges either make you better or bitter. The people that I am looking at right now you are better for what you are doing. I want to be your cheerleader, and that's why I am here,” Gasby said.

National Alzhiemers Buddies would like to thank all panelists and participants in the NAB 2021 Symposium. We would also like to thank all of our audience members for attending and supporting our mission. 

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Daley connects dementia caregivers and inspires change

Joey Daley started to lose bits of his mother, Molly, when she began experiencing symptoms of dementia. Molly began to appear with blank looks on her face, trying to process what was going on, and these episodes of confusion continued to worsen. Joey noticed little bits of his mother being lost to her disease. In 2015, Molly was diagnosed with Lewy Body Dementia. As a caregiver to his mother, Joey yearned to find support from others going through the same experience. Met with a lack of resources and support online, Daley started Molly’s Movement, a weekly YouTube video series of mother and son, in order to educate and inspire people from all walks of life. 

In this heart-breaking youtube series, Daley films interactions with his mother in order to give viewers a better understanding of how dementia can impact someone and their relationships with loved ones. In one of his most popular videos, Joey films an interaction with his mother where she does not remember that he is her son. Daley’s videos have reached over 120 million people since his start in 2017. His videos have allowed caregivers to form a community over shared experiences. In the Facebook page called Molly’s Movement, caregivers from around the world post and communicate with each other—and are able to lean on each other for support. Molly’s Movement has connected millions of people from all around the world in their passion and motivation to find a cure.

Daley said that this movement he created was one of the most rewarding things he has ever done. In an NBC news article, Daley said that he couldn’t watch his mother deteriorate without giving the situation some purpose. 

"I had no idea it would touch that many people," Daley said to NBC news. 

Like many dementia caregivers, Daley never knew what state of mind his mother would be in during their interactions. He can find his mother smiling and willing to talk, or frightened by the thought that a nightmare was actually happening to her, Daley said to NBC. Other times he found his mother forgot how to do the simplest things, such as brushing her teeth. 

“Dementia's like an onion,” Daley said to NBC. “You peel off the layers of the memory on the outer layers until you get to the core, where you’re just a child again. It’s suffering to death."

Daley continued his efforts to support those in need by founding River Walking Sticks, a company that sells custom walking sticks to help the homeless population. Inspired by a homeless U.S. military veteran living in his car, Daley began this effort to help people like him as well as people diagnosed with PTSD. All portion of the proceeds from of walking stick sales are donated to Faith Missions, and the company strives to hire veterans who need work. If you are interested in supporting this initiative please visit their page. 

We at National Alzheimer’s Buddies commend Joey’s relentless effort to raise awareness of dementia related diseases, provide support and relief to caregivers, and support those in need in our own communities. Daley’s story reminds us all that caregivers are the invisible patient. National Alzheimer’s Buddies is currently looking at ways our organization can support caregivers and provide respite care. 

By Julia Ward and Hajera Naveed

If you would like to share your story with the National Alzheimer’s Buddies for our blog please reach out to us at inquiry@alzbuddies.org.

Inside look at a caregiver's life: NAB Interviews LIfeWithGrams

The National Alzheimer’s Buddies team recently met with Instagram influencer @lifewithgrams. Kris has been taking care of her grandmother, Mary, who has had Alzheimer’s for the last five years. Kris is also very active in raising awareness and funds for Alzheimer’s disease within her community in Chicago. On her Instagram, she posts regular updates with her grandma, and is able to share a glimpse of her experience as a caregiver with her followers. Read the following interview transcript to learn more about her experiences with her grandmother and as a caregiver for someone with Alzheimer’s. 

NAB: How long has Alzheimer’s Disease been at the forefront of your life?

Kris: It's been at the forefront of my life for the last four and a half years, my great-grandma had Alzheimer's. She died when I was about 16 but at that time I just assumed, it was like all older people got that and forgot. I really didn't know anything in-depth about what it entails or anything like that, so when my grandma was diagnosed at the end of 2016, we saw a lot of irrational and weird behaviors from two years before that. Once she was diagnosed, that's when I really kind of dove headfirst into learning everything I could and really being impacted by it, because I ended up taking care of her so I'm about four and a half years in and I have been fully involved.

[At the time she was diagnosed] my sister had just had a baby, and my grandma was leaving the baby unattended and doing things like that. Grandmawould never have done that before. [Once] her hair burnt off when she was using her curling iron and I guess she was leaving it on way too long, not knowing how long she was using it. And all of her hair burnt off and she blamed it on my brother-in-law. She said I know it was you, you came down here and cut all my hair off and we [said] Gram what's going on? My sister [said], “I have this brand new baby, I don't really know what to do, I don't think she can live here anymore, because I'm worried.” 

My mom [said] don't worry about it,  I'll come get her. So, my mom took Grandma and brought her to Vegas where my mom had lived, and then again my mom was like she’s blaming me for everything she's putting weird things in the fridge and I don't know what's going on. So then my family here in Chicago decided to bring her over to see if we could figure out what's going on.

[When she came to Chicago] it was November, and it was snowing and she got really fed up and [said] “I'm done I don't want to be here anymore”, and she walked out of the house without shoes on and would not come back in, and so me and my sister that live here called 911 because we did not know what to do.

From there, it was like a three month process of her being evaluated and put into these different memory units while figuring out exactly where this was stemming from. Eventually, she was diagnosed with Alzheimer’s. 

NAB: Can you tell us more about how the diagnosis played out in your family, in terms of tension or stress? 

LifeWithGrams: That was definitely a very trying three months. The doctors, after giving us the diagnosis, presented it as if it was the end, and not that she could actually thrive with this disease. There was really no positive feedback or anything. They just said our next step is a memory care unit or a nursing home. So, because of that, my grandma was placed in a nursing home. She's got Medicaid insurance, so it really wasn't our choice as to where she was going to live. Our options were limited because we did not have the funds to pay out of pocket and she's always been low income her whole life. She never owned any property or anything like that; she's always lived with family. We had a few options of where she could stay and we picked the one closest to us. 

She was there for about three months and I visited her everyday. I wanted to go see her and make sure she was okay. Within those three months, she lost about 25 pounds. I saw that it was really affecting her as a person, she seemed depressed and miserable there. I know everyone's situation is different but nursing homes on a national level need to be evaluated for [standard of care]. 

[For us,] it was not a good environment and it was really crazy timing.  I had an open room available [at my house] and I spoke to my family, and I [said] look I know I’m 29 years old, I know you all think I can't do this but I don't have any children, and I feel like this is what I am meant to be doing. I said I can't watch her in this nursing home any longer.  I said she used to be full of life a few months ago, and now I feel like I've lost her completely. My family definitely said I shouldn't do this, which definitely caused some tension amongst the family, but eventually, they agreed to give it a try since it was obvious she was not doing well in the nursing home. In my mind, I felt like she wasn't going to have much time left, because of how quickly she was deteriorating.

So we took her out of the nursing home and it was a total 360 from there. Obviously, the disease was still there, and was something I had to learn to deal with but she came back a little bit when she moved in with me and my family. Although my family was very hesitant for a while, after a few months they really saw our connection and how well she was doing. We all decided this was what was best for now, and four and a half years later she is still here. 

NAB: What are some of the best parts of taking care of Grams and what have been some of the more difficult aspects of it? 

LifeWithGrams: For me, the best part really is getting to share that love and that joy with her. A lot of people say to me “what about your life” but what is life really if we can’t love and share our lives with people. She raised me and she took care of me so being able to share those moments still and have that laughter, and even just a hand squeeze is important to just know that the love is still there. 

I would take all the hardships to still have that kind of connection. The hardest part for me really was at the beginning when it was difficult to separate the disease from my grandma. It was really hard when she would do these weird things to me; it was hard not to get frustrated.

After a few months of learning the differences and the signs of what Alzheimer’s does to you, it was a little bit easier to calm my frustrations or anger because it was the disease and not Grams. That was probably one of the most difficult things in the beginning. As of now, I feel like I'm in this really good groove and we have a nice life. The hardest part is the waiting game, I suppose. Now it's like when is the next stage gonna hit, because four years ago she knew my name, and with each stage, you have to conquer the new challenges. 

We recently had a scare when she didn’t get out of bed for three days, she did not wake up. We called the doctors and everything was okay. She was just a little bit low on oxygen. Now all of a sudden she's in the end stages, you know. We ended up changing her diet and now a few weeks later she's back to walking and talking and doing everything, so it's really hard when you don’t know when the next dive is going to happen so you can’t plan for it. You just don't know from one day to the next, it could be totally different.

NAB:  Do you have any advice for current or future caregivers? 

LifeWithGrams: If you think you're a patient person before, your patience will grow immensely by doing this. The biggest thing I have to say is it can be a long and hard journey so find outlets that work for you. You need real support. I am lucky to have my sister live close by whom I can get support from.  Take some small breaks for yourself, but if you find yourself feeling overwhelmed, this is not a job for one person, you need a community. This is not meant to fall on the hands of one person so really try to find your tribe, find the people that work for you. There are so many organizations and so many outlets with caregivers support groups, and even on Instagram and TikTok, you can find people that understand. With being a caregiver, I think an outlet like therapy is such a nice way to release any frustrations and grow as a person. 

I think it's a little different for me, whereas for some people it's almost forced upon them. So I really have to say opening up your own mindset to realizing this is just another part of your life and that your life isn't over is super important.

*Some sentences have been edited for clarity. The interview was condensed for this blog post. 

If you would like to share your story with the National Alzheimer’s Buddies for our blog please reach out to us at inquiry@alzbuddies.org.