Help Me End Alzheimer's

The Palliative Care and Hospice Education and Training Act (PCHETA) is currently being considered in the 116th Congress. This piece of legislation is supported by several health care non-profits and professional agencies, including the Alzheimer’s Association. According to the Alzheimer’s Association, “PCHETA would increase the availability and quality of care by establishing palliative care and hospice workforce training programs, creating a national education an awareness campaign about the benefits of palliative care and available services and supports, and enhance research on improving the delivery of palliative care.” 

I reached out to Dr. Danielle Noreika, the Program Director of the Hospice and Palliative Medicine Fellowship at VCU Health, to ask some questions about hospice, palliative care, and how this law could improve the quality of care for patients throughout the United States.

1)     What is the difference between hospice and palliative care?

There are a number of differences but the most notable is the eligible patient population. Hospice is based on an insurance benefit that is applied to patients with a terminal disease and an expected prognosis of 6 months or less who do not want life prolonging measures. Palliative care is a specialty that provides an extra layer of support for patients who have life limiting illnesses with no restrictions on medical care decisions or prognosis.

 2)     How can palliative care help in patients with Alzheimer’s disease?

Again our goal is to be an extra layer of support—to the patients and their loved ones. Palliative care teams frequently manage symptoms to improve quality of life but can also be introduced to help patients and families navigate complex care decisions. There are many points along the course of Alzheimer’s disease where thorough and supportive discussions can help create a care plan that is focused on the goals and values of the patient as an individual. There are times when the patient can no longer play a part in the medical decisions and families may struggle with what steps to take next—palliative care teams are available in many areas as a resource to families who are looking for more support.

 3)     What training is involved in palliative care?  How can PCHETA improve this?

There are training and certification opportunities on many levels in palliative care since we operate in an interdisciplinary manner. Physicians from multiple primary specialties can seek fellowship training in Hospice and Palliative Medicine (HPM) and become board certified.  Nurses, social workers, and chaplains can also seek further training and certification in palliative care. There are additionally separate training and certification processes for hospice.  

This bill is very exciting in that it encourages education of a workforce in palliative care—there are still many gaps remaining in accessing specialists in our field and increasing support and awareness will help address those opportunities. This bill also has the potential to secondarily improve what we call primary palliative care—or the palliative care skill set that every provider caring for patients with serious illness should have.

 4)     What do you wish practicing physicians knew about a career in palliative care?

As a practicing palliative physician I would tell them that it is a very rewarding career—there are many opportunities to improve quality of life for patients with life limiting diseases that can be achieved in a team based care format. As a fellowship director I would say that there are many practicing physicians who are not aware that they would qualify for entering fellowship and board certification in HPM—10 different primary boards recognize a pathway into our specialty.  Among our faculty we have practicing physicians from many different backgrounds—internal medicine, oncology, infectious disease, family medicine, surgery—and the diversity in education leads to wonderful learning opportunities for our trainees.

To learn more about PCHETA: https://alzimpact.org/priorities/palliative_and_hospice_care 

To the Virginia House of Delegates and Virginia State Senate,

As an Internal Medicine Resident at Virginia Commonwealth University who cares for many patients with dementia, I am asking you to consider adding a $300,000 budget amendment to support a Dementia Care Coordination Program, which will provide a much-needed service to those with Alzheimer's disease.

 From 2015-2018, the Dementia Care Coordination Program was funded by a federal grant to support a partnership between the Virginia Department of Aging and Rehabilitative Services, The University of Virginia's Memory and Aging Clinic, and the Jefferson Area Board of Aging. Although the federal grant has ended, the 2018 Report of the Virginia Alzheimer's Disease and Related Disorders commission recommended using state funds to continue this vital service and apply it to the state level.[1] 

 Studies have shown that primary care physicians are often overwhelmed and have limited resources to provide comprehensive management or care coordination for individuals with dementia. There is simply not enough time or resources in a 30-minute visit to go through all the complex issues that go into caring for someone with Alzheimer's while covering the other multiple medical problems they may be facing. Primary care physicians play an important role in the overall care for those with Alzheimer's, but in order for patients to receive the best care, they really need a dedicated dementia clinic with an interdisciplinary team.

 At the University of Virginia Memory and Aging Clinic, Dementia Care Coordinators play a very important role in helping patients and caregivers navigate the complicated trajectory of Alzheimer's. The Dementia Care Coordinators have specialized training in many aspects of Alzheimer's care, including:

·       Educating caregivers about the changes to expect with the disease and how to take the appropriate steps to prepare for these changes

·       Helping families draft important documents, including advanced directives, wills, and designating a power of attorney

·       Making at least one home visit to assess the safety of the home

·       Maintaining relationships through routine phone calls and follow up visits

 The overall goal of this program is to empower patients and caregivers. There is no cure for Alzheimer's at this time, but we can improve the quality of life for patients and their caregivers by providing them with excellent support. Of course, there is an added financial incentive as this program can keep patients out of the hospital and decrease unnecessary healthcare utilization and costs. 

 The Dementia Care Coordination Program has received awards at the state and national level. The program won third place for best practices in the state from the Commonwealth Council on Aging in 2018. It was honored with an Aging Innovations Award by the National Association of Area Agencies on Aging, which recognized programs that "develop and implement cutting-edge approaches to support older adults, people with disabilities, and their families and caregivers."[2] Ultimately, it was one of the top four highest-scoring programs among 45 local programs recognized.

 Delegates and State Senators, I ask you again to please provide funding to continue a program that has already proven to support patients and caregivers in the Commonwealth of Virginia. 

[1] https://rga.lis.virginia.gov/Published/2018/RD337/PDF

"Alzheimer's is the most under-recognized threat to public health in the 21st century."-Dr. David Satcher, former U.S. Surgeon General.

Today marks the first day of the 2018 Alzheimer's Advocacy Forum in D.C. One of the major pushes of the Forum is to ask congressional leaders to pass the BOLD Infrastructure for Alzheimer's Act. This bill will help public health officials promote healthy lifestyle interventions that may reduce the risk of Alzheimer's, promote early detection and diagnosis, and improve the collection of data to better analyze the impact of Alzheimer's disease. 

I am grateful that my wife is able to attend this year's Advocacy Forum. She, along with other advocates, have already succeeded in getting our Congressman, Donald McEachin, to sign on as a co-sponsor. I am hopeful that the advocates at the forum will be able to convince their Representatives and Senators to sign on as well. 

There have been elected officials that have said, "We have enough issues going on right now, I don't have time to review this." When the new administration took over in 2017, I wondered how Alzheimer's Advocates  would be able to ask Congress for more funding when so many other issues were going on. However, my cousin wisely told me, "Keep up the Alzheimer's advocacy alongside everything else-taking care of people is the heart of this fight." 

To the elected officials who say there are too many other issues going on, I want you to remember that this public health problem isn't going away anytime soon. It's estimated that it cost $259 billion to care for people with Alzheimer's, and that Medicare and Medicaid bear 2/3 of the health and long term costs of those with Alzheimer's. Listen to the advocates on the financial, social, and psychological impacts of Alzheimer's. Please give the proper resources to our public health officials to better tackle Alzheimer's and other forms of dementia.

November is National Alzheimer’s Disease Awareness month. It has been quite an exciting time for Alzheimer’s advocates. Bill Gates has committed $100 million to Alzheimer’s research! Members of Congress have introduced the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (S. 2076/H.R. 4256). To quote the Alzheimer’s Impact Movement, ‘The bill would create an Alzheimer’s public health infrastructure across the country to implement effective Alzheimer's interventions focused on public health issues such as increasing early detection and diagnosis, reducing risk and preventing avoidable hospitalizations.” https://alzimpact.org/priorities/bold_alzheimers_act

I asked Dr. David Cifu, an international leader in TBI research and leader of the Veterans Health Administration (VHA) Dementia Steering Committee, to discuss his upcoming project to improve dementia care.

You have done a significant amount of work with TBI research at the VA. What has made dementia such an important focus of your work?

I’ve been involved in clinical neuroscience research for 25 years, including studying the long-term effects and care for individuals who develop disability as the result of traumatic brain injury, stroke, Parkinson’s disease, and brain tumors, and a common factor has been challenges associated with aging and associated neurological, cognitive and functional decline. Many of these individuals have overcome fantastic odds to return to a level of everyday life that supports their independence and ability to remain in the community, but then they have a new event (medical disorder, hospitalization, fall, medication effect, etc.) and suddenly they are significantly cognitively impaired and can no longer remain independent. It is an exaggerated version of what happens to individuals who develop AD, who also seem to suddenly have a change in cognitive ability (although increasingly it appears that they had underlying progressive difficulties but their caregivers and/or family ignored or accommodated to it without identifying it as progressive dementia. It was apparent that the U.S health care system was struggling with how to prevent these “sudden” declines, but was failing. All of these observations and issues came to a head for me from a research standpoint during the Iraq and Afghanistan Wars when, as national Director for all Rehabilitation Services for the VA, I was asked to study (and at the same time develop specialized clinical programming and settings nationwide!) the seeming challenges that service members and Veterans were having with chronic neurologic dysfunction and high rates of neurodegeneration (dementia, Parkinson’s ALS) as a result of their military exposures and service. In 2013, I was charged with establishing a nationwide research Consortium to formally study this phenomenon (www.cenc.rti.org) and was also asked to lead the VA’s leadership team on dementia (VHA Dementia Steering Committee) as the expert on military trauma and brain injury. Thus, what had been my clinical and research experience (individuals with neurologic injury and trauma struggled with increased and rapid cognitive decline as they aged) suddenly became my latest career advancement and focus.

What are you working on now to enhance dementia care in Richmond?  

While better understanding the characteristics and diagnostic elements of dementias, in particular AD, are vitally important, as a PM&R physician I have always been focused on identifying treatments and management approaches to my patients’ overarching (functional) problems and complaints, regardless of the precision of the diagnosis or the predicted outcome. I was quite aware of the large body of scientific literature that supported the benefits of lifestyle interventions, social engagement, and cognitive rehabilitation on dementias, but became increasingly cognizant that there were NO integrated and coordinated clinical services that provided all of these evidence-based (and common sense) elements to individuals at risk for, beginning to demonstrate and even significantly impaired by dementia. Given the increasing scientific evidence that up to 50% of dementias are the result of lifestyle factors (diet, exercise, sleep, stress, tobacco, alcohol), healthcare management (diabetes mellitus, hypertension, medication errors) and social engagement (socialization, friendship, cognitive enrichment) and that the time course to dementia initiation and progression could be delayed (? Prevented) by implementing strategies to optimize these factors, we have put together a team of professionals who both understand this and who can implement individualized programming to optimize each of these areas. This team includes physicians (PM&R, Neurology, Primary Care), therapists (physical therapy, occupational therapy, speech and language pathology, recreation therapy), counselors (Psychologists, NeuroPsychologists) and advocates (Alzheimer’s Association, family), but will feature the patient as the CENTER of the team! Our goals will be to; 1) enhance the awareness of things vital to brain health, 2) educate individuals on risk factors, real world interventions and ways of monitoring progress, 3) develop a series of cognitive wellness groups to bring together clients, 4) foster both physical and cognitive exercise, 5) develop relationships with community health care providers to encourage durable treatments and outcomes, and 6) monitor program outcomes to allow for performance improvements and enhancements.

What partners are you working with in the community to achieve your goals?

VCU’s Department of PM&R is joining forces with Sheltering Arms (the largest provider of PM&R services in the Commonwealth) on a range of new and exciting projects and joint ventures, and this program of “Brain Health and Cognitive Wellness” is one of the most exciting and far-reaching. We are aiming for Spring 2018 to begin rolling out elements of the program and to have the program fully operational by Summer 2018.

What can the health care community do to help?

Diagnosing and managing the devastating impacts of AD, while supporting the person affected and their loved ones requires a diverse knowledgeable and caring team of individuals. Finally developing a much needed, integrative health approach to the long-term care of the brain is a challenging endeavor and is likely to require a series of iterative steps to optimize care and service delivery. While a “beta-version” of the program will begin seeing clients this Spring, it’s likely that the input and support of a wide range of community members (professionals, caregivers, advocates) will be needed to get the program to a level of access and expertise that will meet the needs of all the clients referred. Thus, we will need both patience and constructive feedback on ways to enhance the experience and outcomes, as we start-up and perfect this unique program. We will also be looking for both primary care and specialty care clinicians to refer to the program. We will also be asking for advocacy groups and families to spread the word. Together, I am confident we will develop and deliver state of the art, innovative care that will be both impactful to a large and deserving population. We will be making a difference on many levels and will look to enhance and expand services as we progress along this meaningful pathway.

Dr. David X. Cifu is the Senior TBI (Traumatic Brain Injury) Specialist for the U.S. Department of Veterans Affairs providing clinical and research expertise for VA programming related to TBI, concussion, combat injury and polytrauma. Dr. Cifu assumed the role of Senior TBI Specialist in September 2015. Prior to this role, he served as National Director of PM&R (Physical Medicine and Rehabilitation) for VHA from 2009-2015. He also maintains an active clinical and research practice at the McGuire (Richmond, Virginia) VA Medical Center. Dr. Cifu has been at the Virginia Commonwealth University (VCU) School of Medicine and Health System since 1991, where he serves as Associate Dean for Innovation and System Integration, Tenured Professor and Chairman of the Department of PM&R. He has been funded on 43 federally-funded research grants for over $137 million, including currently serving as Principal Investigator of the VA/DoD $62.2 million Chronic Effects of Neurotrauma Consortium (CENC). In his more than 25 years as an academic physiatrist, he has delivered more than 550 regional, national and international lectures, published more than 225 scientific articles and 65 abstracts, and co-authored or edited 34 books and book chapters. He is the Past President of the American Academy of PM&R. Dr. Cifu serves on multiple VHA committees, including the Congressional TBI Committee, TBI Screening and Evaluation Committee, and the Dementia Steering Committee. He has served as Lead Author and Co-Chair of both the 2009 and the 2016 “VA/DoD Persistent Symptoms After Mild TBI Clinical Practice Guidelines.

On Friday, the American Health Care Act (AHCA) was withdrawn before going to a vote. This proposal would have hurt millions of older Americans, especially those facing Alzheimer’s disease. While the Alzheimer’s Association ended up making a statement regarding its concern involving proposed changes to Medicaid, this announcement was made just prior to a scheduled vote (which was eventually postponed and canceled). Per the 2017 Alzheimer’s Association facts and figures, caring for people with Alzheimer’s and other dementias will cost the U.S. $259 billion in 2017. Medicare and Medicaid cover most of these costs, which comes to an estimated $175 billion in 2017. 

I would have expected the Alzheimer’s Association to be much more vocal and timely against the AHCA.

The Affordable Care Act is not perfect, but has provided a groundwork for improving health care in the United States. The Affordable Care Act done the following for Alzheimer’s patients and caregivers:

·       Protection from pre-existing conditions

·       Medicaid expansion (in certain states). Almost ¼ of patients with dementia living in the community are on Medicaid

·       Improved care to Nursing Facilities

·       Health Insurance for Young Caregivers, which allows young adult children to remain on their parent’s insurance while they provide care.

For the complete report from the Leaders Engaged in Alzheimer’s Disease (LEAD) Coalition: http://www.leadcoalition.org/wp-content/uploads/2012/02/LEAD-Coalition_Issue-Brief-Health-Reform_Jan-23-2017.pdf

I have supported the Alzheimer’s Association for years as it supports research, funding, and care for millions of Americans. I understand that the Alzheimer’s Association and its sister organization, the Alzheimer’s Impact Movement, is a nonpartisan organization. However, I think now, more than ever, it is important for the Alzheimer’s Association and the Alzheimer’s Impact Movement to be vocal against proposals in health care that not only affect patients with Alzheimer’s, but older Americans overall.

This week, over 1200 Alzheimer’s Advocates will be going to D.C. to advocate for two major proposals: an increase of $414 million for research and the passage of the Palliative Care and Hospice Education and Training Act (PCHETA). I encourage these advocates at the Advocacy Forum to look around. I want them to think about the advocates who can't be there and how their advocacy can help improve the lives of those patients and caregivers. 

Remember the 15.9 million family members who are not there because they can’t afford to leave the loved ones they are caring for.

Remember that 41% of caregivers have a household income of $50,000 or less and can’t afford to take off work and/or hire someone to care for their loved one.

Remember that African Americans are twice as likely and that Hispanics are 1.5 times as likely to develop Alzheimer’s and other dementias as older Caucasians. From my experience, most advocates at the Advocacy Forum are older Caucasians.

In addition to the two legislative priorities, I hope advocates will think about this at the Forum and discuss with fellow advocates. Future health care proposals will be introduced, and I believe the Alzheimer's Association can and should be a pro-active leader to ensure legislation does not harm patients.

 I hope you will join me in supporting our advocates this week.

 To support their ask of increased funding: https://alzimpact.org/priorities/research

“Keep up the Alzheimer’s advocacy alongside everything else-taking care of people is the heart of this fight!”

 I was catching up with my cousin this morning about the past six days. It has not even been a week since the new administration took over, but the disturbing and outrageous executive orders have made it seem much longer.

 My fiancée and I are planning to meet with our congressman next month on behalf of Alzheimer’s advocacy. I told my cousin that I felt like this almost had to take the backburner to all the other issues going on. For the past week, I wondered how I could even imagine bringing up Alzheimer’s funding and advocacy when we don’t even know what is going to happen in the next four years. How could I expect Alzheimer’s to even be on the nation’s mind when women’s rights, freedom of speech, Muslim-American rights, and so much more are at risk?

 My cousin’s response to this inspired me. It made me remember why I’m so passionate about this. No matter who is in charge, the public health threat of Alzheimer’s remains the same. Patients will continue to require care, and caregivers will continue to need our support. We need to support Alzheimer’s research now so more than ever. If our advocacy slows, then so will the funding.

 Since I started going to Congress for Alzheimer’s advocacy, I’ve seen great strides that advocates have accomplished. Although more needs to be done, federal funding for Alzheimer’s has increased since 2012. Just last year, bipartisan support for the HOPE for Alzheimer’s Act resulted in the Centers for Medicare and Medicaid Services (CMS) to pay for cognitive and functional assessments and care planning. This means that Medicare will cover not only dementia screening, but a dedicated session of care planning.

 It is unclear what changes will be made to Medicare, Medicaid, and the Affordable Care Act in the next four years. Regardless of your stance of the Affordable Care Act, provisions of the Act have been very beneficial to Alzheimer’s disease patients and their caregivers. The LEAD (Leaders Engaged in Alzheimer’s Disease) Coalition has put together a concise report of the benefits the Affordable Care Act have supported Alzheimer’s disease patients and their caregivers. The LEAD Coalition urges the government to ensure that these provisions are included in a future health law if the ACA is repealed. Some of these include:

·       Protection from pre-existing conditions

·       Medicaid expansion (in certain states). Almost ¼ of patients with dementia living in the community are on Medicaid

·       Improved care to Nursing Facilities

·       Health Insurance for Young Caregivers, which allows young adult children to remain on their parent’s insurance while they provide care

For the complete report: http://www.leadcoalition.org/wp-content/uploads/2012/02/LEAD-Coalition_Issue-Brief-Health-Reform_Jan-23-2017.pdf

 I wake up every day horrified about what I see from this administration. I’m not going to let this distract me from my advocacy effort. Like my cousin said, “taking care of people is the heart of the fight.” The problems of Alzheimer’s haven’t disappeared, and it’s up to advocates to remember that.

“I’m sorry, but you have Alzheimer’s.”

This is one of the most devastating diagnoses a doctor can give to a patient. Currently, there is no medicine to prevent, slow down, or cure Alzheimer’s disease. It may seem like the doctor can offer nothing to the patient, but there is a resource that is often underutilized: The Alzheimer’s Association.

Keep in mind that all of the services listed below are FREE for patients. These programs are for patients and their caregivers at any stage of Alzheimer’s disease or other dementias.

I interviewed Marie Kolendo, Executive Director of the Alzheimer’s Association of Greater Richmond, to let doctors, patients, and caregivers know about the wealth of resources available.

1. If I have a patient in clinic with Alzheimer's, how can I refer them to the Alzheimer's Association?

 There are multiple ways depending on what the patient wants; www.alz.org; www.alz.org/grva; 804-967-2580 (ask for Care Consultant); and 800-272-3900. We also have "prescription pads" that have our contact information on them. You can simply give them a page from the pad (it's the size of a real prescription pad) and they don't have to write down the numbers or website. 

2. If I am trying to refer a patient to the Alzheimer's Association, what services in particular do you all offer? 

(1) In person or telephonic Care Consultations – this is a service that offers personalized care planning, education, and support to persons living with Alzheimer’s or a related dementia and their families. This program is available at all points in the disease process – from a new diagnosis to late-stage.

(2) 24/7 hotline – community resources, emotional support, and caregiving advice available anytime and always answered by a person in either Richmond or Chicago

(3) Support groups – an opportunity for caregivers to meet to exchange coping skills/ideas and provide mutual support – providing an opportunity for participants to maintain their own health and well-being.

3. It looks like you have care consultants who work at the Alzheimer's Association. What exactly are care consultants? Please see the attachment below.

4. If I have a patient who cannot make it to the Alzheimer's Association office, what other options do they have? See above, we help people on the phone or we can meet with them in their home. 

5. What population most utilizes the Alzheimer's Association in Richmond? Are there certain patient populations that the Alzheimer's Association is trying to reach out to further? 22% African American; 61% Caucasian; 4% Latino/Hispanic; and 13% Multicultural/Ethnic. We are working to expand our outreach into the African-American and Latino/Hispanic communities. 

6. The Walk To End Alzheimer's takes place on November 5th. What is your fundraising goal, and how will this money help serve the Greater Richmond area?  The Richmond Walk is the third Walk for the Greater Richmond Chapter. Our first Walk is on 10/8 in Middle Peninsula (Beth Page Camp Resort); second Walk is 10/15 at University of Mary Washington; and third is 11/5 in Richmond. Our revenue goal for all 3 Walks is $745,000. The funds from the Walk are used to expand and enhance our programs and services. The 24/7 Helpline, Care Consultation, Support Groups (we have 30 in our chapter area), and community programs are our core services and we need to expand these services into the inner city and outlying counties.  We need to raise awareness of the Alzheimer's Association. We need to continue in our public policy efforts on a State and Federal policy level.   

To join or donate to the Rams For Memory Walk To End Alzheimer’s Team: http://act.alz.org/site/TR/Walk2016/VA-GreaterRichmond?team_id=333598&pg=team&fr_id=9371

“Any alcohol use? Any tobacco use? Any other drugs?”

These are the three main questions that most health care providers ask their patients when documenting a social history on a note.

What stressors do you have in your life? What social support do you have? What is your home life like? What do you do for fun? Do you wear a helmet when you ride a bike? Do you wear a seatbelt?

I remember learning these questions and having to ask them to a standardized patient as a medical student. My classmates and I laughed about how silly some of these questions seemed. How does wearing a helmet have anything to do with my patient’s pneumonia? Why do I care about what my patient does for fun when they’re having a medical emergency?

A recent patient encounter I had showed me that sometimes a more thorough social history can help me to better understand my patient. I had a patient who I was admitting from the Emergency Department with a chief complaint of shortness of breath and chest pain. I only had a few minutes to review her prior notes before seeing her. There was one thing I noticed in the social history, however, that helped me better understand my patient. This was not only mentioned in her primary care provider’s notes, but in the various subspecialty physician notes as well.

“The patient is the primary caregiver to her husband, who has dementia.”

This statement primed my brain. As I reviewed the patient’s medications with her, she told me she had not been taking several of her prescribed medications over the past week. From reviewing her prior notes, this seemed a bit unusual as she typically was very compliant with her medications. As I asked her some more questions, I learned that her husband had just passed away. She had been busy being a caregiver to her husband, and also had to deal with the funeral preparations. Even after her husband’s death, my patient had an amazing caregiver mentality:

“I’m just glad all of this happened now and not when everything had been going on over the past couple of weeks.”

My patient recovered and was discharged home to her very supportive family. I felt confident that she would have proper follow-up and social support, as her family had been in the hospital with her and was very involved in her care. At the end of her hospitalization, it was amazing to see how much stronger she was than when she first came in.

The social history was very helpful in this situation and can be applied to almost any patient. Social factors can be a major hindrance for patients to be healthy. In this example, my patient had excellent social support from her family. Despite even the best support, caregivers still get overwhelmed and can put their loved one’s health needs in front of their own. It’s important to tell our patients who are caregivers that they need to be extra cognizant about taking care of themselves. An ill caregiver is not going to be as helpful as a well caregiver.

 Taking this a step further, it is even more overwhelming for caregivers if they do not have social support. If they are the only ones caring for their loved one, it can be an extremely daunting task. Perhaps one of the most unavoidable social history issues is financial stress. Caregivers may try to save money by not going to see their own doctor. They may avoid taking their medications or refilling their own prescriptions to save money.

So imagine – it’s Father’s Day on Sunday, and while most people are wondering what to get for their father, you’re at home knowing that despite whatever you get for him, it will not have the same meaning. You reminisce about what your father may have wanted before everything came crashing down. You remember how your dad was a handyman before it all fell into pieces. You remember that summer you spent with your dad building a picket fence because he was determined to make the front yard perfect. I remember these little things about my dad - these everyday memories turned precious because of Alzheimer’s.

Every time we needed to repair something, out came the handy old tool bag he got when he first came to America. He never wanted a new bag because he knew exactly where he had carefully placed each tool. Now his favorite tool bag lays forgotten in the basement, collecting dust and cobwebs, untouched in six years.

If you look around my parents’ house you’ll notice the many unfinished projects, the broken furniture, the unhung curtains, the stairwell in disrepair - all neglected because the man of the house has slowly faded away. Each of these unfinished projects tells the story of my dad’s decline. They were never finished because my dad starting forgetting how to charge his tools, how to hang up curtains, or how to use a ladder. Despite being carefully placed in his special bag, he forgot where his tools were and what they were used for.

As a daddy’s girl, I sometimes hope this is all just a phase and that in a few weeks dad will have the energy and wherewithal to finish my mom’s demanding projects. But as the weeks, months, and years pass, I’m coming to terms with the reality of this disease. He has forgotten how to do the things he loved the most; things that me–as his little girl–loved doing with him. He can’t hang the curtains, fix the pipe under the sink, or repair the fences that he loved building and painting. My dad is one of the nearly 2 million Latinos with Alzheimer’s or dementia and he’ll never again be the handyman he used to be.

Your brain allows you to read this line and make a decision on whether you will continue to read the next line, or move on to another task. Your brain allows you to instantly remember lyrics of a song you haven’t heard in 10 years when it plays again on the radio. Your brain is an amazing organ that is more complex than any computer built in the world. As much as we have learned about the brain over the past century, there is still so much we don’t know.

 Earlier this week, the University of Virginia announced the formation of the UVA Brain Institute to better understand one of the most complicated organs in the human body. This is the second institute to involve collaboration of multiple disciplines across the University after the Data Science Institute. The full announcement, written by UVA Today writer Farris Samarrai, can be found here: https://news.virginia.edu/content/university-establishes-brain-institute-part-strategic-plan

 I was curious to learn more about the Brain Institute and reached out to Dr. Jaideep Kapur, who is the neurologist leading the Brain Institute. He and Dr. Phillip Parrish, the Interim Vice President for Research, kindly responded.

1. The UVA Brain Institute is a University-wide project. What are the pillars that make up the Initiative?

 Dr. Kapur: The pillars are sensory biology, neuro-immunology, traumatic brain injury and integrative neuroscience.

2. The UVA Today article mentions that this is the second pan-university institute after the Data Science Institute. Why was the Brain Institute chosen?

Dr. Kapur: I think brain is the most important organ, but I will let Dr. Parrish answer that.

Dr. Parrish: This round of competition started last fall when at the request of the Provost, 24 faculty teams submitted letters of intent to become the second Pan University Institute based upon multidisciplinary approaches to major societal issues. Of these 24, in December five were chosen to develop full proposals in environmental resilience, social justice, brain, Healthspan, and global infectious diseases. The competition was intense, and both internal and external reviewers provided subject matter expertise. Brain was chosen because UVA has nationally and internationally recognized faculty organized into the pillar areas of focus from across Grounds, their vision was compelling, the research planned supported their vision very well, and the opportunity to distinguish UVA was apparent.

3. The Brain Institute will combine the expertise among many different areas of the University: the College and Graduate School of Arts and Sciences, The Curry School of Education, the School of Medicine, the School of Engineering and Applied Science, and the Data Institute. Can you give an example of how the different programs will interact to better understand the brain?  

Dr. Kapur: Here is an example from traumatic brain injury. 

Mechanical engineering works to estimate forces acting on the brain during a car crash, a football player wearing a helmet in a collision, or a soldier blasting a wall to enter a building during urban warfare. They design helmets for athletes. Radiologists and Neuroradiologists image the impact of this injury. This ranges from subtle injury to brain white matter tracks to obvious lesions and bleeds. Athletic trainers (Curry) provide care for athletes who have sports concussion right on the field and decide who plays and who goes to a doctor. Neuropsychologists measure cognitive impact of these injuries. Neurosurgeons treat bleeds and Neurologists treat/ study posttraumatic headache and epilepsy. Neuropathologists study CTE brains. When they all work together, they can advance understanding and treatment of TBI.

4. The UVA Today article mentions that the Institute will start with a $1 million internal grant. Is there an ultimate goal of funding?

Dr. Kapur: We will leverage this funding to get Research grants and philanthropic support.

5. What neurological diseases does the Institute plan on tackling, and how can this multi-disciplined approach help to better understand the brain?

Dr. Kapur: In addition to TBI, we will study neuro-degenerative disorders including Alzheimer's disease, stroke, epilepsy, autism, brain tumors among others. 

6. How can the UVA community help the Brain Institute, and hopefully find cures for some of the most devastating diseases in the world?

 Dr. Kapur: You are doing that already by raising awareness and generating philanthropic support. 

  Dr. Kapur is the Eugene Meyer III Professor of Neuroscience and Neurology and is the leader of the newly founded UVA Brain Institute. 

Photo credit: https://med.virginia.edu/faculty/faculty-listing/jk8t/

 Dr. Parrish is the Interim Vice President for Research and a Principal Scientist in the Department of Materials Science and Engineering. 

Dear future patients across the world,

You are in luck. You are about to receive about 200 graduates from Virginia Commonwealth University School of Medicine.

 My classmates nominated me for a scholarship for my work in raising awareness and funds for Alzheimer’s disease. I’m biased, but I think this class is special. A cause is nothing without support.

They could have easily ignored my Facebook posts, my tweets, and my in-class announcements. They could have done so without any guilt because the rigors of medical school make doing anything outside of studying and self-care a tough task.

This group of people took the time to care. They donated their time and money, neither of which is abundant for a medical student. Even in the first month of school, people showed up to a meeting to learn more about Alzheimer’s and trained to be respite care volunteers in the hospital. They signed up for the Walk To End Alzheimer’s.

In our second year of medical school, more and more of my classmates joined. We fielded the largest team at the Walk To End Alzheimer’s in Richmond. My friends in the Medical School Student Government worked tirelessly to raise money for Alzheimer’s through the Hilarity For Charity University Program. They could have picked any of the many wonderful charities, but they took a chance in the inaugural Hilarity For Charity University program. Even after the talent show, my classmates helped to advertise for a March Madness Bracket Challenge to entice VCU undergraduates and the Richmond community to join. Keep in mind this was all during the end of second year as Step 1 (board exam) approached.

Even in our third year of medical school, which is when the class splits up into different groups to complete different rotations in the hospital, people took the time to sacrifice a day off to attend the Walk To End Alzheimer’s. The same goes for 4th year. I even had a friend come with me to Congress to advocate for increased Alzheimer’s research!

Someone from almost every specialty took the time to help the Alzheimer’s community. This may be overly optimistic, but because of the compassion this group of people has, I’m going to tell you that:

·       You’re getting Internal Medicine and Family Medicine doctors who not only understand the importance of diagnosis, but understanding the toll it takes on family members.

·       You’re getting Surgeons who will understand the stress a caregiver may have because they’re wondering who will watch out for their loved ones while they recover.

·       You’re getting Emergency Medicine doctors who will understand the stress of trying care for Alzheimer’s on top of the emergent medical need.

·       You’re getting Pediatricians who will understand the difficulties a child may have when their parent or grandparent has Alzheimer’s.

The support this class has shown has truly inspired me to keep pushing for Alzheimer’s advocacy until meaningful progress has been made. Thank you Class of 2016!

2012 Walk To End Alzheimer’s

2013 Walk To End Alzheimer’s

2013 Walk To End Alzheimer’s

2014 MCV Talent Show benefiting Hilarity For Charity

2014 Walk To End Alzheimer’s

2015 Alzheimer’s Advocacy Forum

“I need you to be bold.”

Barb Cole emphasized this powerful statement to a staff member of Senator Warner during our meeting at the Alzheimer’s Advocacy Forum. Barb was diagnosed with early-onset Alzheimer’s at the age of 53.[1] If she didn’t tell you that she had Alzheimer’s, you would have never known.

Senator Warner is perhaps one of the best supporters of Alzheimer’s disease in the Senate, but we need even the best supporters to be bold to get Congress on board with the necessary increase in funding.

I could feel the difference on Capitol Hill in 2016 compared to my first time advocating for Alzheimer’s in 2012. At the time, the political climate was not good for increasing funding for research. With the sequester looming, Senator Warner warned that it would be difficult to increase funding for anything. In FY2012, federal funding for Alzheimer’s was about $500 million.

Last year was a historic year for Alzheimer’s research, with an increase of $350 million to make a total of $991 million per year. Without the efforts of advocates, this increase would not have been achieved. Despite this increase, federal spending is still less than half of $2 billion, which is the number that scientists say is needed to develop a treatment and potentially a cure by the year 2025. This year, advocates are pushing for an additional $400 million to get closer to the goal of $2 billion.

During my meeting with staff members, I gave an example of how NIH funding pays off. Researchers from the UVA’s Brain Immunology and Glia (BIG) Center discovered lymphatic vessels that, contrary to prior belief, provide a direct connection between the brain and the immune system.[2]

Dr. Jonathan Kipnis, whose lab discovered the vessels, believes this discovery could have implications in Alzheimer’s and almost every other neurological disorder. “In Alzheimer’s, there are accumulations of protein chunks in the brain. We think they may be accumulating in the brain because they’re not being efficiently removed by these vessels.”[3]

Dr. Antoine Louveau, the postdoctoral fellow who made the initial discovery, says the next step is to understand the function of these vessels in brain physiology and in neurological diseases. I asked Dr. Louveau what is holding them back from achieving these goals. His answer won’t surprise you.

“I don’t know if something is holding us back; but time and money are, to me, always the limiting factors in science. With the meningeal lymphatic system being a new discovery, we need to develop the tools that could help us understand and study their function, and this requires time and investment to achieve this goal.”

Just last week, a study by Dr. Beth Stevens from Boston Children’s Hospital was released that suggested Alzheimer’s may be the result of an inappropriate immune response.

Emily Underwood from Science writes, “Dr. Stevens has spent much of her career studying a normal immune mechanism that prunes weak or unnecessary synapses as the brain matures from the womb through adolescence, allowing more important connections to become stronger. Stevens hypothesized that the same mechanism goes awry in early Alzheimer’s disease, leading to the destruction of good synapses and ultimately to cognitive impairment.”[4]

The discoveries are groundbreaking and the researchers are ready to ramp up their efforts. Now it comes down to Congress to listen to the experts and adequately fund projects so treatments can be developed by the year 2025. If Congress needs an example of how an increase in research leads to meaningful outcomes, they just need to look at HIV.

“Human immunodeficiency virus (HIV) infection and the acquired immunodeficiency syndrome (AIDS) have shown an almost unique linkage between biomedical research and improved healthcare outcomes. A transformation has been seen between 1981 when AIDS was a rapidly fatal condition, to the present dramatic survival prolongation. HIV infection is a chronic illness requiring ongoing modern therapy.”[5]

I don’t want to hear how it depends on Appropriations, even though I know it’s a politician’s reality. I want to see more than just tweets of Senators and Representatives talking about how they support an increase in funding. I want them to be bold and convince their colleagues who don’t support this increase to change their minds.

 We need them to be bold. Ask your elected officials to act now:

https://act.alz.org/site/Advocacy?cmd=display&page=UserAction&id=1295

 Alzheimer’s advocates from Virginia outside of Senator Warner’s office. 

 [1] http://richmondfamilymagazine.com/article/alzheimers-association/

[2] https://news.virginia.edu/illimitable/discovery/theyll-have-rewrite-textbooks

[3] https://news.virginia.edu/illimitable/discovery/theyll-have-rewrite-textbooks

[4] http://www.sciencemag.org/news/2016/03/over-pruning-synapses-may-drive-early-stage-alzheimer-s-disease

“I don’t know why I’m here. Please tell me what’s going on!”

“Do you remember getting upset with your husband?”

“No!”

My patient with Alzheimer’s had been admitted for pulling a knife on her husband after becoming agitated. She did not remember the event, and was very confused as to why she was admitted to the hospital.

I remember sitting down with her husband and family to discuss her diagnosis of Alzheimer's. I remember asking him what he understood about Alzheimer's, and he admitted that besides some memory loss, he did not really understand what to expect. I asked him if he had access to a computer at home to look up more information about Alzheimer’s, and he stated he did not. I printed off some information to help him understand the diagnosis and what to expect as the disease progresses. I also printed off some guidance for tackling problems he may face as a caregiver and how to handle arguments with his wife. I learned from this experience the importance of educating our patients, and giving them the tools to seek help when they need it. 

This experience is why I am going to Congress next week to ask them to pass the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act (S. 857 / H.R. 1559).

 I’m excited for the opportunity to go to Congress to advocate for families who have been affected by Alzheimer’s. I’m participating in a program called “District-Forum-District,” in which constituents meet with their Representative or their staff before and after the Alzheimer’s Advocacy Forum in April.

 This year, I’m especially excited for the Alzheimer’s Advocacy Forum because I get to work side-by-side with my girlfriend, Jennifer, who graduated with her Master’s in Public Health this past December.

 On March 16th, Jennifer and I went to Representative Bobby Scott’s office to discuss the HOPE Act. We also discussed the impact of Alzheimer’s disease, especially in Richmond and the rest of Representative Scott’s district. African-Americans are twice as likely to develop late-onset Alzheimer’s than Caucasians, and are less likely to have a formal diagnosis.[1]

There are two main goals of the HOPE Act:

·         Provide coverage under Medicare for comprehensive care planning following the diagnosis of Alzheimer’s disease or other dementias

·         Require documentation in the medical record of the diagnosis

 Why does there need to be coverage for comprehensive care planning? According to a 2015 Alzheimer’s Facts and Figures report, only 45% of people with Alzheimer’s or their caregivers have been told about the Alzheimer’s diagnosis by their doctor.[2]

 Although the study did not look at why the disclosure rate was so low, probable reasons include diagnostic uncertainty, time constraints, and fear of causing emotional distress. The HOPE Act can address these issues by giving physicians time to discuss treatment options, clinical trials, supportive services in the community, and long-term care options.

 We know the importance of education when it comes to our patients who are newly diagnosed with other chronic diseases, such as diabetes.[3] Medicare covers several aspects of follow-up after being diagnosed with diabetes, including a program called diabetes self-management training. This training prepares patients to adjust to living with diabetes, including advice on exercise, diet, monitoring blood sugar, and medication management.

 The follow-up appointment after an Alzheimer’s diagnosis is crucial for the patient and their family. While the current drugs for Alzheimer’s are modest at best, care planning can improve patient’s overall medical care and well-being, as well as provide support for their caregivers.

 I will make another post after the Alzheimer’s Advocacy Forum, but in the meantime, please ask your Representative and Senators to support the HOPE Act: https://act.alz.org/site/Advocacy?cmd=display&page=UserAction&id=1603

 [1] http://www.alz.org/africanamerican/

[2] https://www.alz.org/facts/downloads/facts_figures_2015.pdf

I had the opportunity to meet with Dr. Jonathan Kipnis and Dr. Antoine Louveau, the researchers at the University of Virginia who found this game-changing discovery: http://news.virginia.edu/content/researchers-find-textbook-altering-link-between-brain-immune-system

Here is a Q &A of our interactions:

1. In a few sentences, what did your lab discover, and what implications do you think it holds in the treatment of neurological diseases, including Alzheimer's? We recently discovered that, contrary to the consensus in scientific community, the central nervous system possesses its own lymphatic drainage system located in the surrounding of the brain called the meninges, establishing a direct connection between the brain/CSF and the immune system. Even though the road is still long before we'll know the implication of this lymphatic system in neurological diseases, we believe that this system might help us understand the etiology of neurological diseases, such as Multiple Sclerosis and Alzheimer's disease, and might represent a potential therapeutic target. 2. What is the next step for this ground-breaking discovery?  The next step for us is to understand the function of the meningeal lymphatic vessels in brain physiology and in neurological diseases. We are focusing on multiple sclerosis and Alzheimer’s disease. 3. What is holding you back from achieving your next goals? I don't know if something is holding us back; but time and money are, to me, always the limiting factors in science. With the meningeal lymphatic system being a new discovery, we need to develop the tools that could help us understand and study their function, and this requires time and investment to achieve this goal. 4. You've had a lot of news coverage since the publication of your lab's research. How has that translated in terms of funds since the publication? Thanks to the news coverage of our research, we received some donations to help us in our research; donations for which we are extremely grateful. The news coverage also shed a light onto the research our lab is conducting and is leading to new collaboration with other labs and foundations that want to work with us to make science move forward. 6. How do you think the UVA community can help find the treatments and/or cure for Alzheimer's? Scientific research can only move forward efficiently if there is communication. Establishing collaborations between different labs at UVA is a way to help discuss, challenge, and improve research. Communicating our research to the broader UVA community is also important to help people understand what we are doing in the laboratory and why the work we are conducting is important.

Dr. Antoine Louveau is a postdoctoral fellow at UVA’s Center on Brain Immunology and Glia (BIG) Center. 

According to a study released by the Alzheimer's Association in March, only 45% of Alzheimer's patients and their spouses are told that they have a formal diagnosis of Alzheimer's.

 What can we do to change this?  The Alzheimer’s Association has a wealth of information for those newly diagnosed, for caregivers looking for relief, or for tips on how to calm an agitated loved one.  In addition, the Association has educational programs, support groups, and the ability to connect people to clinical trials.

The information is there, and now is the perfect time to remind physicians, nurses, and social workers about these resources.  It amazes me how few patients and their families have heard of the Alzheimer's Association.  Almost every time I see a patient and their caregiver, I write down the Alzheimer's Association's website and contact information for them to take home.  Physicians I have worked with have said that they would think about doing the same thing the next time they saw a patient who could benefit. As a medical student, I have the luxury of time.  I have time to sit there with the patient and ask them about their understanding of Alzheimer's.  I have the time to print out some of the resources from the Alzheimer's Association page and read through them with the patient's caregiver.  As much as we would like to think that every doctor has time to do this, the truth is that time is not a luxury that most physicians have in a busy office practice. Physician outreach is something that the Alzheimer’s Association takes seriously.  I hope that this month that the Alzheimer’s Association and its advocates can again remind physicians about the help available for their patients.  If doctors are reminded of the Alzheimer's Association's resources, doctors and their staff will be more likely to have Alzheimer's on their minds, which could hopefully lead to the right diagnosis.  In addition, the nursing staff would have the information readily available to pass on to patients and family before they leave.  

 The New York City Alzheimer’s Association Chapter has “prescription for care” pads that physicians can give to patients and their families to alert them of the free core services available.  I believe that a resource like this should be in every Primary Care Office. http://www.alz.org/nyc/in_my_community_19951.asp#pads

I recently found out that there is a free App created by the Alzheimer’s Association for health care providers that can help with diagnosis, education, and resources for both the clinicians and patients: http://alz.org/health-care-professionals/health-care-clinical-medical-resources.asp

Are you curious about what “Alzheimer’s research at UVA” actually means when Hoos For Memory mentions it?  Dr. George Bloom, an Alzheimer’s researcher at UVA, took the time to answer a few questions.

How long have you been interested in Alzheimer's research?  What drew you towards it?

My initial interest in AD started in the late 1980’s, when I began to wonder what protein(s) formed the neurofibrillary tangles (NFTs) that accumulate in AD neurons and were known at the time to be linear protein polymers. Much of my career until then had been focused on microtubules, which are long hollow polymers that assemble from a protein called tubulin, so I wanted to apply my knowledge of microtubule assembly to try to solve the mystery of NFT assembly. I ran into some obstacles that prevented me from even starting an NFT project, but a few years later I finally did begin some AD-related research by studying an enzyme (protein phosphatase 2A) that removes phosphates from the protein, tau, which by then had been shown by others to be the building block of NFTs. All of that work was done at my former institution, the University of Texas Southwestern Medical Center at Dallas, and it motivated me to transition the focus of my lab from basic cell biology to AD after I moved to UVA in 2000.

What aspect of Alzheimer's are you currently studying?  

The main focus of my lab now is to learn what happens at the very beginning to convert normal, healthy neurons into AD neurons. To that end, we are in the midst of unravelling a complex, multi-pronged cellular signaling network that impairs inter-neuronal communication and kills neurons. This signaling network is initiated by a peptide (small protein) called amyloid-β (Aβ), which is the building block of the amyloid plaques that accumulate in AD brain, and requires tau. We are also beginning to leverage our basic science findings to try to develop better diagnostic tools for early detection of AD and new drugs to treat AD effectively.

How much funding does it take to run an Alzheimer's lab?  For example, if we raised $1000, what does that translate to?  $10,000? $100,000?

Right now my lab is fortunate to be operating on an ~$350,000 per year budget that supports the work of 4 PhD students, 2 postdocs, 4 undergrads, 1 volunteer “community scholar” and myself. As high as that budget may seem, it is too small to allow us to pursue some potentially very fruitful areas of research, so I spend an inordinate amount of my time trying to raise enough additional funds so our annual budget can increase 1.5-2-fold.

What has made Alzheimer's such a challenging disease to treat?  How far away do you think we are from finding a meaningful treatment?

It was not until 1980, many years after the “war on cancer” had begun, that AD was finally recognized to be a very common disease of the elderly as opposed to an extremely rare disease of middle age. It then took at least an additional decade for serious AD research to gain much steam, so we have not yet had a lot of time to study this immensely complicated disease. Results that have jelled within just the past few years have indicated that AD begins 25 years before symptoms are evident (~5 years before death on average), by which time massive, irreversible neuron death has occured and the processes that cause the neuronal dysfunction and death in AD are akin to infections that are out of control. Experimental drug trials have been hampered by rules that prevent patients from participating until they exhibit symptoms, so this understandably cautious approach may have dismissed drugs with potential efficacy at early disease stages. The recent advent of new PET imaging techniques that can detect amyloid plaques and NFTs before memory and cognition are seriously impaired is forcing a relaxation of drug trial rules, which is encouraging. Nevertheless, our understanding of the fundamental molecular mechanisms that cause AD remains fairly primitive, so there is still an urgent need for more basic research.

Dr. George Bloom graduated from The University of Pennsylvania with his undergraduate degree in History and Biology and his PhD in Biology.  Dr. Bloom has been an Alzheimer’s researcher at the University of Virginia since 2000.  For more information about Dr. Bloom’s lab: http://www.faculty.virginia.edu/georgebloom/public_html.gsb4g/mainpage1.htm