Reader’s Guide for The Problem of Alzheimer’s

Part 1: Alzheimer’s Unbound and Part 2: The Birth of Alzheimer’s Disease

Overarching question: How have intellectual and academic trends; cultural, historical, and societal factors; and political factors shaped our understanding of and approach to Alzheimer’s Disease (AD)?

Several important di- and tri-chotomies are identified throughout the text. What impact do these have on our approach to AD:

  1. What is a disease? The clinical syndrome or the pathology?

  2. What is aging vs. disease?

  3. How do we prioritize and balance between

    • Care vs cure

    • Cost vs value

    • Prevention vs behavioral intervention vs medical treatment

  4. Discuss the conflicts and complexities of how different groups perceive and approach AD; for example:

    • Clinicians & researchers  

    • Specialized clinicians & general clinicians

    • Clinicians/researchers & regulators/policy makers

    • Medical 'experts' & families 

    • Specialties: Neurology, psychiatry, & geriatrics

Additional questions to discuss:

  1. How do the personal stories of key scientists, including their challenges, opportunities and setbacks, inform your views of science and how it progresses?

  2. Can you identify anything missing in the story so far?

  3. Would the story be different in another country? How?

Part 3: Living Well in the House of Alzheimer’s and Part 4: A Humanitarian Problem

Opening question:

Out of CARE or CURE, if you had to choose to fund only one (consider prevention to go with CURE), which would you fund? What do we value in these decisions of CARE and CURE systems?

Additional questions to discuss:

  1. Factors that influenced two big transitions in our understanding of AD:

    • From senility to AD

      • scientific discoveries: imaging, largely (piB)

      • medical ethics and socio cultural factors: civil movement (women, race) rights to autonomy, right to self- determination.

      • political (cold war, etc.)

    • From AD as an individual disease to a crisis

      • Science: hyperfocus on amyloid; compounded by the failures of clinical trials targeting amyloid pathology. Lack of understanding of “heterogeneity”, frailty, and the neuroscience of decision making.

      • Medical ethics/socio cultural: work force issues (low # of qualified clinical personnel); hard to strike a balance between obeying the ethical obligation/duty to protect your patient while respecting the will of someone whose mind is in danger of decay

      • Political (drives the funding) – implementation of ACA

      • Lack of business model – how do we operate in the current health care system without a business model

      • Fragmentation in communication: between clinicians of different specializations; between clinicians and patients; between patients and caregiver; between clinicians and researchers.

  2. Examples that the tide is changing

    • Science:  mandalas; decision making neuroscience; science of frailty; epidemiology-infused approaches to “learn the scientific methods to discover the causes of a disease”; capacity to learn from mistakes (ARIA prompted a better understand of heterogeneity); Competency assessment tests

    • Visions of business models (Dr. Noel, memory care in Ashville)

Digging a little deeper:

  1. Dr. Karlawish argues that our system of AD care is broken. How? Discuss how the following may help fix our system:

    • Training more specialists

      • ADRD is sub-specialty; even specialists don’t know how to diagnose and care for ADRD

    • Finding different ways to pay for care

      • Donations, gov’t subsidies, caregiver fee, ACA reimbursement for care planning, ACA protecting caregiver health insurance

    • Change culture?

      • Challenging that more medical intervention is always good, delirium, HELP intervention

      • Break down siloed care— example of orthopedics vs medicine with hip fractures; collaborate; listen; create new models of collaborative care

    • Use technology?

      • Real world monitoring of activities to help diagnose early

      • Technological interventions to support care and patient autonomy

    • Change communication?

      • Change the “elder speak”—honey, sweety, etc.

      • Not talking to patient—acting like they aren’t there

      • Not talking to caregiver—but they have relevant information and need care too

    • Change how we deal with autonomy?

      • How to determine patient capacity to make decisions

      • Guardianship

    • Do we need a political approach?

      • Influencing President, Congress

      • An Alzheimer’s plan

      • Framing ADRD as an economic societal problem

      • A move to a lobbying, PAC approach

    • Which of these approaches is most convincing and scalable? For example, for us, technology and creativity came across as less convincing, and we wanted more information on how technology could be used to improve the system and support autonomy.

    • How is academic training a potential tool to address this problem?

  2. Discuss how ADRDs are a humanitarian problem—how ADRDs are a medical, scientific, political, civic, cultural, social problem–and how we might develop interventions from all of these sectors to help. “Our duty…is to… be present from diagnosis to death”

    • Modifiable risk, across the lifespan [~40% of dementia risk is modifiable; intervene earlier]

    • Social factors and interventions

      • Education, our mistreatment of one another (racism, etc., leading to stress)

    • Policy

      • Social insurance for chronic disease, long-term care

      • Education policy

      • Physician aid in dying

    • Technology, engineering, design

      • Engineered/designed communities like the Lantern

    • Civic

      • Banking institutions (whealthcare), whole dementia friendly communities like Bruges, Belgium

    • The arts

      • Promote creativity; shared creations

      • Creativity vs reminiscence (which can be wrong and anxiety provoking)

    • Culture / values

      • Accommodate different love stories

      • Accommodate death with dignity

    • How to reduce stigma?

      • How do loving deceptions change how caregivers may feel about people with dementia?

      • Advertising campaigns that erase personhood (e.g. ad with white paint covering woman’s face)

    • Discuss the idea of homelooseness (feeling unmoored from having a place that feels like home/homesickness)

  3. Very little space devoted to discussing social determinants of ADRD, health disparities, and race. How do these play a role?

  4. Dr. Karlawish argues “AD is a crisis”. Is it? 

    • If it is a crisis, is it also a crisis outside of the US?

      • For example, in countries with a different health care and insurance system that the US, is it also a crisis?

    • Is it actually a crisis of geriatric medicine more broadly, not just AD and related dementias specifically?

  5. Discuss the following dichotomies & balances

    • Cure vs Care Redux

      • Does our society focus on Cure at the expense of Care? How?

    • Safe, social, engaged days

      • What are some ways reviewed by the author that we can create days which are balanced on these 3 factors?

      • How does patient insight guide this balance?

    • Time, task, truth

      • Caregivers giving all vs having a life (feeling homebound; impoverishment)

      • Engaging in loving deceptions;

    • Privacy lost vs autonomy support gained even as we may become disabled

      • Technology monitoring

      • Robot caregivers

    • Amyloid vs other intervention targets

    • How to honor and accommodate the past self, present self, future self

    • Scientific questions/answers vs. values, morals, ethics

      • Science doesn’t decide what we value