An A- Z Guide to Simplify and Optimize Dementia Care

An A- Z Guide to Simplify and Optimize Dementia Care
Alternative Titles: Best Practices for Optimal Care in Alzheimer’s and Dementia Dementia Made Easy: Tools for Your Practice Dementia Made Easy: An A – Z Guide for Working with Patients with Memory Loss and Dementia An A- Z Guide to Simplify and Optimize Alzheimer’s and Dementia Care

Objectives Understand the value of timely detection and learn simple approaches to cognitive screening in routine practice Tools for health equity and cultural competence Gain knowledge of best practices in medication and non-medication treatments for patients with dementia Recognize key management priorities throughout the continuum of dementia Understand the risks associated with caregiving and how to connect caregivers to evidence-based therapies, resources and services Leave with a full clinical toolbox Objectives for Physician session

Alzheimer’s Disease: Challenges and Opportunities
Alternative Titles: Best Practices for Optimal Care in Alzheimer’s and Dementia Dementia Made Easy: Tools for Your Practice Dementia Made Easy: An A – Z Guide for Working with Patients with Memory Loss and Dementia An A- Z Guide to Simplify and Optimize Alzheimer’s and Dementia Care

Alzheimer’s: A Public Health Crisis
Scope of the problem 5.2M Americans with AD in 2013 Growing epidemic expected to impact 13.8M Americans by 2050 and consume 1.1 trillion in healthcare spending Almost 2/3 are women (longer life expectancy) If disease could be detected earlier incidence would be much higher Pre-clinical stage 1-2 decades Some populations at higher risk Older African Americans (2x as whites) Older Hispanics (1.5x as whites) Alzheimer’s Association Facts and Figures 2014

The Lens of Health Equity
Take into consideration health disparities and inequities Seek the attainment of the highest level of health for all people Help create a new style of “curb cut” by promoting cultural competence Alternative Titles: Health equity refers to the attainment of the highest level of health for all people Cultural competency is critical to reducing health disparities and improving access to high-quality health care, health care that is respectful of and responsive to the needs of diverse patients. When developed and implemented as a framework, cultural competence enables systems, agencies, and groups of professionals to function effectively to understand the needs of groups accessing health information and health care—or participating in research-in an inclusive partnership where the provider and the user of the information meet on common ground. (National Institutes of Health)

Percent with Alzheimer’s
Base Rates 1 in 9 people 65+ (11%) 1 in 3 people 85+ (32%) Age Range Percent with Alzheimer’s < 65 4% 65 -74 13% 75 -84 44% 85 + 38% Speaker Notes: Emphasize how broadly this disease impacts the population Consider how many other conditions are this common in geriatric patients? Base rates are surprisingly high, so not chasing a needle in a haystack Dementia is more common than most realize Alzheimer’s Association Facts and Figures 2014

Patients with Dementia
A population with complex care needs Indisputable correlation between chronic conditions and costs 2.5 chronic conditions (average) 5+ medications (average) 3 times more likely to be hospitalized Many admissions from preventable conditions, with higher per person costs Speaker Notes: While rarely characterized as such, dementia is a chronic condition and disease that we must pay attention to in the new paradigm in the same way we address other chronic conditions such as diabetes and heart disease People with dementia who receive primary care have on average 2.5 chronic conditions and take five or more medications. They are also three times more likely to be admitted to hospitals at higher per person payment rates and for a variety of often preventable conditions including dehydration, urinary tract infection, pneumonia, and delirium. What do we know about the relationship between costs and chronic conditions? They are indisputably correlated. ( Alzheimer’s Association Facts and Figures 2014

Challenges & Opportunities
AD under-recognized by providers Only 50% of patients receive formal diagnosis Millions unaware they have dementia Diagnosis often delayed on average by 6+ years after symptom onset Significant impairment in function by time it is recognized Poor timing: diagnosis frequently at time of crises, hospitalization, failure to thrive, urgent need for institutionalization Speaker Notes: Main point is that we currently do not do a very good job as providers detecting dementia when we rely on subjective signs and symptoms based on conversation alone. Populations experiencing health disparities, such as African Americans, are diagnosed even later in the disease process which further limits the opportunity to enhance their quality of life. Boise et al., 2004; Boustani et al., 2003; Boustani et al., 2005; Silverstein & Maslow, 2006

Diagnostic Challenges
Societal Ageism, lack of understanding re: normal aging Fear and stigma Healthcare inequities Expectation that MD will identify/diagnose health problems Systemic/Institutional Low priority Few incentives Lack of procedural support Few dementia specialists available May lack access to (or awareness of) community resources Speaker Notes: Healthcare providers and lay people alike have not been educated about what healthful brain aging looks like If we do not have a good understanding of healthy brain aging, how can we detect unhealthy brain aging in a timely manner?

For Providers Time Lack of definitive tests Many patients unaware, do not report symptoms Limited efficacy of medication treatments Limited cultural competence Lack of awareness re: benefits of non-medication interventions Fear of delivering wrong diagnosis, bad news Implications for physician/patient relationship

Myth: People don’t want to know they have Alzheimer’s disease
Studies Agree: Most people want to know. % Speaker Notes: Studies have repeatedly demonstrated that 80% or more of adults do, in fact, want to know if they have Alzheimer’s disease or a related condition. Blendon et al., 2012; Holroyd et al., 2002; Turnbull et al., 2003

International Physician Survey Lack of definitive tests (65%, top barrier) Lack of communication between patients / caregiver and physicians 75% reported discussion initiated by patients/caregivers 44% “after they suspected the disease had been present for a while” 40% said patients/caregivers did not provide enough information to help them make a diagnosis Patient / Family denial (65%) & social stigma (59%) Speaker Notes: Physicians in this study asked what barriers they encounter that make diagnosis of AD and related conditions difficult International Alzheimer’s Disease Physician Survey, 2012

“Beyond mountains, there are mountains.” Haitian Proverb Speaker Notes: This proverb sums up the challenges for many healthcare providers Doing a diagnostic work-up seems like an up-hill battle When you do reach the first mountain peak by making a diagnosis of AD, seems like all you see are more mountains to climb (safety concerns, driving, behavior problems, caregiver support, etc.)

If we don’t diagnose, does it still exist?
Speaker Notes: Alzheimer’s disease is not a needle in a haystack, it is common If we choose to ignore it, it doesn’t go away It is still there, will worsen over time, and will cause significant disruption to the patient’s life and to their ability to follow treatment recommendations for any and all health conditions

Rationale for Timely Detection
Patient Care / Outcomes Time Money Speaker Notes: When considering any change in clinical practice, most of us consider these 3 factors to be most important Will paying more attention to my patients’ cognitive health make any difference in their overall health outcomes? Can the change be implemented in a time efficient manner? Will it be cost effective for me, the patient, the healthcare system?

Patient Outcomes Improve quality of life
Patients can participate in decisions regarding their future care Decrease burden on family and caregivers Intervene to promote a safe and happy environment that supports independence RTC support/counseling intervention Non-pharm intervention reduces NH placement by 30% and delays placement for others by 18+ months The message: You have a bad disease. We can help you make life better for you and your family. Speaker Notes: Common scenario: Patient’s poor mental status only recognized at time of crisis, during a hospitalization. Discharge provider does not feel patient should be released home independently. Social worker has to call around and see what facilities have an “open bed”. Patient gets stuck going wherever there is an opening instead of going to a place they would have preferred. I do not know about you, but I don’t want my future to be based upon where an “open bed” exists. I want to have a say in where I live, who takes care of me, etc. Early, timely diagnosis gives patients the gift of being able to participate in decisions that directly impact the course of their life. Non-pharmacological interventions that focus solely on providing education and support to patients and families have been shown to have considerable benefits and positive outcomes. We can dramatically improve outcomes by connecting families to these resources as soon as possible. Again, diagnosis has very little to do with meds. This intervention, studied extensively by Mary Mittelman, is offered widely across MN under the name “Family Memory Care” and can be a “game changer” for families Mittelman et al., 2006

Patient Outcomes Improved management of co-morbid conditions
Underlying dementia = risk factor for poor compliance with ALL treatment goals (e.g., diabetes, hypertension, CHF, anticoagulation) Reduce ineffective, expensive, crisis-driven use of healthcare resources Unnecessary hospitalization (dehydration/malnourishment, medication mismanagement, accidents and falls, wandering, etc.) The message: We want to provide you with high quality care that is proactive and cost effective Speaker Notes: One has to consider the fact that underlying cognitive impairment (dementia) is an obvious risk factor for our patients’ ability to effectively manage any health condition Therefore, detecting dementia is not just about treating dementia. It is about removing a hidden barrier to good compliance with other conditions (e.g., diabetes) Common scenario: 80 y/o woman comes in for routine visit. She has a hx of diabetes. Her A1C is significantly elevated, suggesting her diabetes is not well managed. When asked if she is checking her blood sugar and taking her insulin regularly, the patient says “yes, I am” (she offers what most patients do in that situation = a socially acceptable response). So, the provider responds by increasing her insulin or adding medication to address the problem. The elephant in the room, however, is that the patient in fact is not checking her blood sugar or dosing her insulin correctly because she has unrecognized dementia and can’t remember to do these things on a regular basis (nor can she juggle numbers or do the simple math required to draw the right amount of insulin). Instead of removing this barrier (i.e., getting support for her medication administration), we are adding more complication and risk by changing meds. Many times unrecognized dementia also leads to unnecessary and very expensive healthcare utilization because of issues, like medication mismanagement, which could be avoided by calling out the underlying dementia

Patient Outcomes Treat reversible causes
NPH, TSH, B12, hypoglycemia, depression The message: Maybe you don’t really have a bad disease after all! Speaker Notes: Common scenario: Patient’s poor mental status only recognized at time of crisis, during a hospitalization. Discharge provider does not feel patient should be released home independently. Social worker has to call around and see what facilities have an “open bed”. Patient gets stuck going wherever there is an opening instead of going to a place they would have preferred. I do not know about you, but I don’t want my future to be based upon where an “open bed” exists. I want to have a say in where I live, who takes care of me, etc. Early, timely diagnosis gives patients the gift of being able to participate in decisions that directly impact the course of their life. Non-pharmacological interventions that focus solely on providing education and support to patients and families have been shown to have considerable benefits and positive outcomes. We can dramatically improve outcomes by connecting families to these resources as soon as possible. Again, diagnosis has very little to do with meds. This intervention, studied extensively by Mary Mittelman, is offered widely across MN under the name “Family Memory Care” and can be a “game changer” for families

Time Simple screening tests can be done by rooming nurse
Brain as 6th vital sign Recommended tool takes 1.5 – 3 minutes Only conducted annually and in context of signs and symptoms Mini-Cog does not disrupt workflow & increases capture rate of cognitive impairment in primary care Speaker Notes: Emphasize how little time screening actually takes (there are a variety of good tools, several are quite short) and that screening can be done by an allied health professional (e.g., nurse) Studies have already looked at implementing screening practices in primary care and result show it does not disrupt the normal workflow Borson et al., 2007

Money AD most expensive condition in the nation
$203 billion in 2013, $1.2 trillion in 2050 Cost effectiveness of early dx/tx? Large scale studies ongoing Economic Models No med known to alter costs of care Disease education/support interventions increase caregiver capability, save money, and delay NH Even if assume small # of people benefit (5%), $996 million in potential savings for MN over 15 years Speaker Notes: Last bullet refers to the Family Memory Care program. Even if only 5% of caregivers in Minnesota were connected to the program (remember – it is simply education and support and has nothing to do with medication), the potential cost savings for the state is exceptionally robust Alzheimer’s Association Facts and Figures 2014; Long et al., 2014

Impact of Optimal Practices
Reduces utilization through comorbidity management Timely Detection Reduces behavioral symptoms Delays institutionalization Increases treatment plan compliance Post-Diagnosis Education and Support Delays institutionalization Reduces neuropsychiatric symptoms Reduces costs Effective Care Management Team-Based Care Reduces acute episodes Improves health outcomes Speaker Notes: Timely detection: -Dementia as an Organizing Principle of Care (we can facilitate better management of all of a patient’s comorbid conditions through assessment of their cognitive status) Counseling and support after diagnosis: Research and clinical practice establish that counseling, education, and support services to individuals in early stages of the disease, and to caregivers throughout the disease, may result in the following direct benefits for care: 1) reducing behavioral symptoms; 2) promoting compliance with treatment plans; 3) providing a support system for people who often feel isolated from their communities, family, and friends; 4) improving moods in individuals with the disease and their family members; and 5) delaying institutionalization (Doody, 2001), (Guerriero, 2004), (Gallahger-Thompson & Coon, 2007), (Mittleman, 1996), (Mittleman, 2004), (Mittelman, 2006), (Mittelman, 2007), (Callahan, 2006), (Cherry 2004), (Pinquart & Sörensen, 2006), (Vickrey, 2006). Care management effective dementia care management is a critical element of care and can: 1) delay institutionalization, 2) reduce neuropsychiatric symptoms, and 3) be cost effective (Callahan, et al., 2006), (Mittelman, et al., 2006), (Wolf, et al., 2009). Care coordination typically encompasses the assessment of a patient’s needs, development and implementation of a plan of care, and evaluation of the care plan (NTOCC, 2008). A team-based approach to coordination has a positive impact on individuals with dementia, their caregivers, and overall care costs and outcomes (Callahan, et al., 2006). Care team approach One way in which providers can improve outcomes and prevent medical crises in dementia care is to coordinate care through collaborative teams within the clinic and have close ties and referral paths to supportive community-based care (Vickery, et al., 2006), (Guerriero, et al., 2004). Good transitions Transitional care support is essential for persons with complex care needs, including those with dementia. Many evidence-based models of transitional care exist and have been shown to make a significant difference on health outcomes, quality, and cost of care compared with individuals who do not receive transitional care, including lower rates of hospitalization and emergency room visits (Coleman, et al., 2001), (Coleman, et al., 2003), (Coleman, et al., 2006), (Naylor, et al., 1994), (Naylor, et al., 1999), (Naylor, et al., 2004). Referral to community based programs and supports The primary care provider plays a critical role in directing individuals with dementia and their caregivers to services and resources that may improve the quality of life for both the individual with dementia and the caregiver (Lyketsos et al., 2006), (Winslow, 2003). Examples include wellness and risk reduction programs including adult day services, exercise clubs, therapy referrals (OT, PT, Speech), and clinical evaluation for sensory aids (vision, hearing). In-person care-giver support and recognition of caregiver as integral part of health care team-- Caregivers of people with dementia are more likely to provide a higher level of care for a longer period of time, greatly increasing their sense of burden (National Alliance for Caregiving and American Association for Retired Persons, 2009), sometimes providing more than 80 hours of care per week (National Alliance for Caregiving and American Association for Retired Persons, 2004). Value of caregiver support and maintaining health of caregiver in order to benefit the person with disease Caregivers play a critical role in supporting individuals with dementia and without them the health care system could not sustain the costs of care for persons with dementia. Currently, 70% of individuals with Alzheimer’s disease and related dementias live at home. Eighty percent of care provided at home is delivered by family caregivers; fewer than 10 percent of older adults receive all of their care from paid workers. Caregivers’ health and well-being is critical to their ability to continue to provide the vital caregiving role. For example, depression reduces a caregiver’s ability to continue to provide for an individual with dementia (Mok, et al., 2007) and may lead to increased depression in the care recipient, which can further impair health and function associated with dementia itself (Eisendorf, et al., 2003). Likewise, caregivers who report feeling stressed because of the impaired person’s behavioral symptoms are more likely to place their care recipient in a nursing home (Alzheimer’s Association, 2014). The close connection between caregiver health and well-being and caregiver ability to fulfill the caregiving role calls for assuring the availability of effective caregiver supports to assist caregivers in maintaining their health and well-being. Care Transitions Improves health outcomes Improves care quality Reduces hospital, ER utilization, and care costs Caregiver Engagement & Support Improves overall well-being of person w/ dementia Increases caregiving longevity and well-being

Changing National & Local Landscape
National Alzheimer’s Project Act (NAPA) Awareness, readiness, dissemination, coordination Annual Wellness Visit For first time, “detection of cognitive impairment” is core feature of the exam MN healthcare systems implementing tools HealthPartners Park Nicollet Essentia Allina Speaker Notes: Including “detection of cognitive impairment” in the annual wellness visit represents a major philosophical shift in Medicare toward the importance of routine monitoring of brain health More and more local health systems are adopting cognitive screening and ACT tools

Rethinking Everyday Practice
Brain historically ignored, not a focus of routine exam Is this logical? Consider base rates of dementia Dementia is simply “brain failure” Heart failure Kidney failure Liver failure Brain as 6th Vital Sign

Introduction to ACT on Alzheimer’s

Impacts of Alzheimer’s
ACT on Alzheimer’s 300+ individuals 60+ organizations statewide volunteer driven collaborative Impacts of Alzheimer’s Speaker Notes: ACT on Alzheimer’s is a statewide, volunteer driven collaboration. ACT started with 50 organizations and 150 individuals. It’s now comprised of over 60+ organizations and hundreds of individuals. All working together to prepare Minnesota for the budgetary, social and personal impacts of Alzheimer’s disease. No single organization owns, finances or controls the collaboration. Additional background if needed: In 2009, Minnesota Legislature charged the Minnesota Board on Aging to establish the Alzheimer’s Disease Working Group (ADWG) and make recommendations for policies and programs that would prepare Minnesota for the increasing number of residents with the disease and family members impacted by the disease. The Working Group filed its report in January 2011, offering a set of recommendations for change. Although the legislative mandate had been fulfilled, a voluntary coalition formed to focus on implementing the recommendations. Originally called Prepare Minnesota for Alzheimer’s 2020 (PMA 2020), it is now call ACT on Alzheimer’s and is focused on implementing the recommendations found in the report. budgetary social personal

Collaborative Goals/Common Agenda
Five shared goals with a Health Equity perspective Speaker Notes: ACT works toward five interconnected goals. To make progress toward these goals, ACT is organized into leadership groups. Identify and invest in promising approaches to Alzheimer’s disease that reduce costs and improve care. ACT commissioned an economic model on what the potential cost savings would be if an evidence based caregiver support intervention were made available state wide. The model's analysis and results are reflected in a Health Affairs article, and a subsequent net savings analysis has been done. Details of both are available on the ACT website. Increase detection of Alzheimer’s disease and improve ongoing care and support. ACT has created practice tools that provide guidance in assessing patients and serving clients with cognitive impairment. The group has also created a curriculum for students and professionals wanting to learn more about Alzheimer’s disease. Sustain caregivers by offering them information, resources and in-person support. This leadership group offered expert input into the development of dementia capability training for MN’s caregiver consultants and Senior LinkAge Line staff. Also developed ACT’s first consumer resource – After a Diagnosis. Aligns with the recommendations in the professional practice tools and offers tips and suggestions for the person with the disease, caregivers, and family members after receiving a diagnosis. The last two goals combine naturally…they are about equipping communities to be “dementia capable” to support residents who are touched by Alzheimer’s disease and to raise awareness and reduce stigma by engaging communities. Languages on the Health Equity visual are (from top, clockwise): English, Spanish, Hmong, Somali, German, American Sign Language

ACT Tool Kit Evidence and consensus-based, best practice standards for Alzheimer’s care Tools and resources for: Primary care providers Care coordinators Community agencies Patients and families

ACT Tools Speaker Notes:
This is a quick snap shot of some of the ACT tools and resources that are available to difference audiences (physicians/providers, care coordinators, community agencies, patients and families, etc.) All of the resources are available online, are FREE, and can be modified to fit into any existing healthcare system

www.actonalz.org Speaker Notes:
The ACT website is simple and easy to use. Tools are downloadable as PDF documents Instructional videos are also available (e.g., how to conduct cognitive screening, deliver a dementia diagnosis, how to coordinate care, etc.)

Clinical Practice Tips

Case Study: Sam 76 y/o retired teacher (master’s degree)
Daughter c/o short-term memory is poor, patient acknowledges problem but does not feel it is significant Repeats himself, multiple phone calls b/c can’t find belongings Other family members have noticed changes Began 2 years ago, getting worse Hx of hypertension and DM, both fairly well controlled Wife died unexpectedly last year, lives alone Conversational presentation fairly intact Oriented x3 but vague awareness of current events Speaker Notes: Use only 1 of the 2 available case studies for discussion and interactive exercises (Sam or Colleen) Sam videos include: Mini-Cog, MoCA, and delivering an Alzheimer’s diagnosis Colleen videos include: Mini-Cog, SLUMS, and care coordination

Case Study: Colleen 66 y/o retired accountant for family business
Presents to primary care with memory complaints Daughter agrees that short-term memory is poor Began 2 years ago, seems to be worsening Hx of Low blood sugar, heart attack x1, repeat ER visits and hospitalizations for atrial flutter Frequent medication changes, managing independently Lives with husband who is still running the family business Speaker Notes: Use only 1 of the 2 available case studies for discussion and interactive exercises (Sam or Colleen) Sam videos include: Mini-Cog, MoCA, and delivering an Alzheimer’s diagnosis Colleen videos include: Mini-Cog, SLUMS, and care coordination

Signs and Symptoms of AD
Memory loss Confusion Disorientation to time or place Getting lost in familiar locations Impairment in speech/language Trouble with time/sequence relationships Diminished insight Poor judgment/problem solving Changes in sleep and appetite Mood/personality/behavior changes Wandering Deterioration of self care, hygiene Difficulty performing familiar tasks, functional decline Alzheimer’s Association, 2009

Practice Tips Unfortunately, most of us do not recognize signs and symptoms until they are quite pronounced Attribution error: “What do you expect? She is 80 years old.” Subjective impressions FAIL to detect dementia in early stages Clinical interview Let patient answer questions without help Remember: Social skills remain intact until late stage dementia Easy to be fooled by a sense of humor, reliance on old memories, or quiet/affable demeanor Speaker Notes: Conversations with patients and subjective evaluations of mental status have extremely low reliability in detecting dementia until advanced stages

Practice Tips Red flags
Repetition (not normal in 7-10 min conversation) Tangential, circumstantial responses Losing track of conversation Frequently deferring answers to family member Over reliance on old information/memories Inattentive to appearance Unexplained weight loss or “failure to thrive”

Practice Tips Raise your expectation of older adults:
Family observations: ANY instances whatsoever of getting lost while driving, trouble following a recipe, asking same questions repeatedly, mistakes paying bills Take these concerns seriously: by the time family report problems, symptoms have typically been present for quite a while and are getting worse Raise your expectation of older adults: If this patient was alone on a domestic flight across the country and the trip required a layover with a gate change, would he/she be able to manage that kind of mental task on his/her own? If answer is “not likely” for a patient of any age: RED FLAG

Practice Tips Intact older adult should be able to:
Describe at least 2 current events in adequate detail (who, what, when, why, how) Describe events of national significance 9/11, New Orleans disaster, etc. Name or describe the current President and an immediate predecessor Describe their own recent medical history and report the conditions for which they take medication

Cognitive Screening

Is Screening Good Medicine?
2014 US Preventative Services Task Force (USPSTF) Purpose: Systematically review the diagnostic accuracy of brief cognitive screening instruments and the benefits/harms of medication and non-medication interventions for early cognitive impairment. Limitation: Limited studies in persons with dementia other than AD and sparse reporting of important health outcomes. Conclusion: Brief instruments to screen for cognitive impairment can adequately detect dementia, but there is no empirical evidence that screening improves decision making. Speaker Notes: Emphasize that this review does NOT say cognitive screening should not be used or be part of routine practice In fact, they find that screening works for its intended purpose – it identifies people with cognitive impairment (adequately detects dementia) The question as to whether cognitive screening impacts provider decision making could not even be evaluated because of a lack of research on the topic If one chooses to do cognitive screening, it makes sense that you would want to use the information to inform the care of your patient Long et al., 2014

Provider Perspective Family Practice Physician
“Avoiding detection of a serious and life changing medical condition just because there is no cure or ‘ideal’ medication therapy seems, at worst, incredibly unethical, and, at best, just bad medicine.” George Schoephoerster, MD Family Practice Physician Speaker Notes: This is just one point of view meant to highlight the fact that ignoring a serious medical condition can have unintended negative consequences and may not be the most ethical way to practice. One can make an argument that we should be moving away from paternalistic medicine. Why should we as providers decide for our patients whether or not they should be informed about a serious and life altering health condition? Shouldn’t the choice to act on the information be in the hands of each patient? If some choose not to act, that is their choice. Disclosing a diagnosis of dementia is in line with person-centered care.

Clinical Provider Practice Tool
Easy button workflow for: Screening Dementia work-up Treatment / care Speaker Notes: Emphasize that care of patients with cognitive impairment and dementia is simplified by these “easy button” tools The provider practice tool is only 3 pages. One page on cognitive screening, one page on the dementia work-up, and one page on treatment/intervention.

Cognitive Screening Initial considerations Timing Research
Routine, annual check-ups or only when patients become obviously symptomatic? Best practice recommendation: Annual screening at 65+ Screening meant to uncover insidious disease Doesn’t add much if you can already detect impairment in basic conversation Research Which tools are best? Balance b/w time and sensitivity/specificity

Cognitive Screening Clinic flow Who will administer screen?
Rooming nurses, social workers, allied health professionals, MDs What happens when patients fail?

Screening Measures Wide range of options
Mini-Cog™ (MC) Mini-Mental State Exam© (MMSE) St. Louis University Mental Status Exam™ (SLUMS) Montreal Cognitive Assessment™ (MoCA) All but MMSE free, in public domain, and online Speaker Notes: There are literally hundreds of screening tools available. They vary greatly by length, sensitivity/specificity, and ability to detect dementia accurately and timely (minimizing false positives, false negatives, etc.). The MMSE has been widely used in the past but has several notable limitations (e.g., it was developed over 40 years ago when our understanding of MCI and dementia was much different, the tool is weighted heavily toward cognitive skills that do not deteriorate until later stages of the disease such as orientation, and it takes 10 minutes to administer which is often too long for routine use). In the last 40 years, substantial research has been conducted on various tools. The Mini-Cog, SLUMS, and MoCA are among the very sharpest instruments available so we will focus our tome on these 3 tools Borson et al., 2000; Folstein et al., 1975; Nasreddine 2005; Tariq et al., 2006

Alternative Screening Tools
Virtually all screening tools based upon a euro-centric cultural and educational model Consider: country and language of origin, type/quality/length of education, disabilities (visual, auditory, motor) Alternative tools my be less biased Speaker Notes: In some cases there may not be an ideal tool available May have to rely more heavily on the clinical history (report from collateral re: changes in cognitive and functional status from baseline) and longitudinal/serial assessment (observed decline in mental status and cognitive screening score over time)

Screening Administration
Try not to: Use the words “test” or “memory” Instead: “We’re going to do something next that requires some concentration” Allow patient to give up prematurely or skip questions Deviate from standardized instructions Offer multiple choice answers Be soft on scoring Score ranges already padded for normal errors Deduct points where necessary – be strict Speaker Notes: It is important not to raise a patient’s anxiety by using words like “test” or “memory” The screen can be introduced as a “check-up from the neck up” or by talking with patients about how medicine is moving more and more toward prevention. “Just like the nurse monitors your blood pressure, heart, and lungs on a routine basis when you come to the doctor (vital signs), we now know that it is also important to monitor the health of the brain on a routine basis. This is something we are doing routinely now.”

Mini-Cog™ Contents Advantages +3 +2 Verbal Recall (3 points)
Clock Draw (2 points) Advantages Quick (2-3 min) Easy High yield (executive fx, memory, visuospatial) Subject asked to recall 3 words Leader, Season, Table +3 Subject asked to draw clock, set hands to 10 past 11 +2 Speaker Notes: Ask the audience why setting the time for “ten past eleven” is a sensitive marker of cognitive decline? Answer: time is an abstract concept. Ten after is symbolically represented by the 2. Our brains do this type of mental gymnastic easily because we do not have dementia. But, patients with early Alzheimer’s disease lose symbolic, abstract thinking. A common response on this part of the task is to draw one line to the ten and one line to the eleven because those are the two numbers you mentioned in the instructions. Their thinking becomes more concrete. The clock is scored all or nothing, 0 or 2 points, because it has been shown to be a very sensitive marker of early cognitive decline. Borson et al., 2000

Speaker Notes: This is screen shot of one of a variety of Mini-Cog forms available (many of which can be found online) Forms are also available from the Alzheimer’s Association and the creator of the instrument, Soo Borson

Speaker Notes: This is screen shot of one of a variety of Mini-Cog forms available (many of which can be found online) Forms are also available from the Alzheimer’s Association and the creator of the instrument, Soo Borson (her address is on the bottom of the screen) Note that this version includes helpful scoring guidelines

Mini-Cog Pass > 4 Fail 3 or less Borson et al., 2000

Mini-Cog Research Performance unaffected by education or language
Borson Int J Geriatr Psychiatry 2000 Sensitivity and specificity similar to MMSE (76% vs. 79%; 89% vs. 88%) Borson JAGS 2003 Does not disrupt workflow & increases rate of diagnosis in primary care Borson JGIM 2007 Failure associated with inability to fill pillbox Anderson et al Am Soc Consult Pharmacists 2008 Speaker Notes: Mini-Cog is a good tool for minimizing bias associated with education and culture (although no tool is perfect) Although it only takes 1/3 as long to administer, the Mini-Cog has the same or better sensitivity and specificity as the MMSE Emphasize that research has shown if a patient cannot pass the Mini-Cog, they can not fill a pill box correctly. So, not only is this a very quick measure of cognitive function, it is also a good indication about the patient’s functional status and ability to comply with general treatment recommendations

Mini-Cog: Sam http://youtu.be/CRQEighdb0w http://youtu.be/CRQEighdb0w
Speaker Notes: Watch this video as an example of how to introduce and perform the Mini-Cog with a patient in the primary care setting Pay attention to how Sam answers the questions Keep track of his score as the video moves along This is a real patient and real provider (no actors)

Mini-Cog Scoring: Sam Speaker Notes: This clock is scored as a 0
The numbers are all present and in their correct locations but the hands are set incorrectly (in a manner betraying the fact that Sam is losing some degree of abstract reasoning and symbolism)

Mini-Cog Scoring: Sam Speaker Notes:
One could give Sam the benefit of the doubt when it comes to the word recall portion of the test. Although he initially could not remember any of the 3 words, he did recall one of the words less than a minute after he was asked for them and before the conversation moved on to another topic. Therefore, he would receive 1 point. His total score is a 1/5. He has failed the screen. This suggests that further work-up is indicated to rule out dementia.

Mini-Cog: Colleen http://youtu.be/DeCFtuD41WY
Speaker Notes: Watch this video as an example of how to introduce and perform the Mini-Cog with a patient in the primary care setting Pay attention to how Colleen answers the questions Keep track of her score as the video moves along This is a real patient and real provider (no actors)

Colleen’s Clock Speaker Notes:
This clock is scored a 0. While at first glance all the numbers are present and seem to be in their correct locations on the clock face, notice that Colleen transposed the numbers 4 and 5. If any numbers are out of sequence, missing, or are included more than once, the clock is given 0 points. This mistake is important to factor in because it may suggest early underlying difficulty with numbers and sequencing which are common symptoms in Alzheimer’s disease.

Colleen’s Score Speaker Notes:
Colleen receives 2 points for list recall. Her clock score is 0. Total score is 2/5. Colleen has failed the screen. Her score suggests that further work-up is indicated to rule out dementia.

Mini-Cog Exercise Form groups of 2 Administer MiniCog to each other
Score sample clocks

Clock #1 Speaker Notes: Ask the audience how they would score this clock Score = 0 points Rationale: Visuospatial problems which have affected the spacing or location of the numbers. Look at the anchor numbers (12, 6, 3, and 9). The 10 is where the 9 should be. Therefore, this is a 0 point clock. It is important to take spacing of the anchor numbers into account because this is how we incorporate evaluation of patients’ visuospatial functions, which often deteriorate early in the course of Alzheimer’s.

Clock #2 Speaker Notes: Ask the audience how they would score this clock Score = 0 points Rationale: Clear spacing deficits (see anchor numbers) and time is represented by a single hand. This is a common response observed by patients with early dementia.

Clock #3 Speaker Notes: Ask the audience how they would score this clock Score = 2 points Rationale: A small percentage of patients will draw the numbers on the outside of the clock. This is considered a normal variation so this is not counted against them. All numbers are represented and the anchor numbers are in their correct locations. There is a slight gap between 2 and 3 but it does not affect the position of the anchor numbers. The hands are set appropriately. Note that the length of the hands does not matter when scoring the Mini-Cog.

Clock #4 Speaker Notes: Ask the audience how they would score this clock Score = 0 points Rationale: The time is represented by an “x” instead of hands of the clock. This is another common response observed by patients with early dementia. It becomes difficult for them to think abstractly so they compromise by making a little mark like this one between the 10 and 11.

Clock #5 Speaker Notes: Ask the audience how they would score this clock Score = 0 points Rationale: Not all the numbers of the clock are represented. Sometimes, patients will lose steam and stop short of completing the clock because of confusion. Alternatively, some become “stuck” in a certain process (such as numbering) and will keep adding numbers past 12 (13, 14, 15, etc.).

Clock #6 Speaker Notes: Ask the audience how they would score this clock Score = 2 points Rationale: This clock is tricky to score. First, look at the numbers. All are represented and there are no missing or duplicate numbers. The 12 and 6 are in their correct locations. There is a space between the 3 and 4 where the 3 should be positioned. Because another number (other than 3) is not occupying the anchor position, we would give the patient the benefit of the doubt and ignore this issue. Points are only deducted when it is clear that the anchor position is occupied by another number. Now look at the 8 and 9. The patient drew two #8s but recognized and self-corrected the error by scribbling one of the 8s out. This error forced them to draw the #9 a bit higher than normal. Because the patient self-corrected their error we would also give them a pass here as well. They have successfully set the time for 10 past 11. Note that the fulcrum of the hands does not need to be centered in the middle of the clock face. This is a full-point clock.

Clock #7 Speaker Notes: Ask the audience how they would score this clock Score = 2 points Rationale: The 6 is slightly out of position but not enough to take away points. Remember, unless another number occupies the anchor position, mild spacing issues are not considered errors.

Clock #8 Speaker Notes: Ask the audience how they would score this clock Score = 0 points Rationale: Although the time is set correctly, the numbers 4 and 5 are out of sequence. Remember to look very carefully when scoring the clock as some errors may not jump out at your right away.

Clock #9 Speaker Notes: Ask the audience how they would score this clock Score = 0 points Rationale: Anchor numbers (9 and 3) are out of position and other numbers occupy the spaces in their place (10 and 4)

SLUMS Speaker Notes: The SLUMS is much more sensitive to early cognitive decline when compared to older instruments, such as the MMSE. The reason is that the tool incorporates more questions involving “working memory” and executive functions which are typically early markers of dementia. The tool’s questions are a bit more rigorous than the MMSE, more in keeping with our current understanding of how high the bar should be set to measure brain health in an aging cohort. You will notice that some of the questions are worth more than one point. This relative weighting of certain questions also makes the instrument more sensitive by putting greater emphasis on certain cognitive functions that are good early indicators of cognitive impairment. The SLUMS is scored out of a possible 30 points, just like the MMSE. The similar score range is helpful for providers who are used to interpreting scores on the MMSE. Tariq et al., 2006

Less than 12 yrs education
SLUMS High School Diploma Less than 12 yrs education Pass > 27 > 25 Fail 26 or less 24 or less Speaker Notes: The SLUMS takes into account level of education. On this instrument, the cut-off score is lower if a patient has not graduated from high school (giving them extra room for normal mistakes on the test). Tariq SH, Tumosa N, Chibnall et al. Comparison of the Saint Louis University mental status examination and the mini-mental state examination for detecting dementia and mild neurocognitive disorder--a pilot study. Am J Geriatr Psychiatry Nov;14(11):

SLUMS: Colleen Speaker Notes: Watch this video as an example of how to introduce and perform the Mini-Cog with a patient in the primary care setting Pay attention to how Colleen answers the questions Keep track of her score as the video moves along This is a real patient and real provider (no actors)

SLUMS Scoring: Colleen
Interactive scoring exercise Speaker Notes: Take a few minutes on your own to score Colleen’s SLUMS

Speaker Notes: Review Colleen’s answers to each question with the audience (if time allows). Alternatively, focus on items where there may be questions or disagreement. The screen shot shows the gold standard score.

Speaker Notes: Ask the audience how they would score this clock. Score = 2 points. No problems are identified.

Speaker Notes: Colleen’s total score is 17/30. She has a high school education and the cut-off for normal is 27. She has failed the screen. Her score suggests that further work-up to rule out dementia is indicated.

MoCA Speaker Notes: The MoCA is considered by many to be the most sensitive cognitive screening tool in existence at the current time. The instrument incorporates many more measures of executive functioning and, like the SLUMS, raises the bar of normal aging to a higher (and more appropriate) level. The MoCA is translated into over 30 languages and there is even a version for the vision-impaired. This is very helpful when working with patients who are not native English speakers or who have disabilities. All forms and scoring material can be downloaded for free online (Google “MoCA test”) Although the test is a very sensitive measure of dementia, it takes approximately 15 minutes to administer so is not considered the best tool for front-line screening. More often, the MoCA is used once a patient fails the Mini-Cog if there are any questions about whether or not the patient is actually impaired (to avoid false positive identifications). Like the MMSE and SLUMS, the MoCA is scored out of a possible 30 points. Nasreddine et al., 2005

MoCA Pass > 26 Fail 25 or less Nasreddine 2005

MoCA: Sam http://youtu.be/ryf8SG0NQLQ?list=UUOPv8U5bHcdDCm4edmQDY9g
Speaker Notes: Watch this video as an example of how to introduce and perform the MoCA with a patient in the primary care setting Pay attention to how Sam answers the questions Keep track of his score as the video moves along This is a real patient and real provider (no actors)

MoCA Scoring: Sam Interactive scoring exercise Speaker Notes:
Take a few minutes on your own to score Sam’s MoCA

MoCA Scoring: Sam Speaker Notes:
Review Sam’s answers to each question with the audience (if time allows). Alternatively, focus on items where there may be questions or disagreement. The screen shot shows the gold standard score.

MoCA Scoring: Sam Speaker Notes:
The MoCA clock is worth a total of 4 points. Sam’s clock is awarded 2 points. Keep in mind that the scoring criteria for the MoCA is very different from that used with the Mini-Cog. Read the directions for the MoCA carefully before scoring. Sam receives 1 point for the outer contour of the clock (circle). He receives 1 point for having all the numbers represented and in their correct location on the clock face. However, he receives 0 points for the hands because he set the time incorrectly.

MoCA Scoring: Sam

MoCA Scoring: Sam Speaker Notes: Sam’s total score is 21/30.
He has a Master’s degree and the cut-off for normal is 26. He has failed the screen. His score suggests that further work-up to rule out dementia is indicated.

Screening Tool Selection
Montreal Cognitive Assessment (MoCA) Sensitivity: % for MCI, 100% for dementia Specificity: % St. Louis University Mental Status (SLUMS) Sensitivity: % for MCI, 100% for dementia Specificity: % Mini-Mental Status Exam (MMSE) Sensitivity: % for MCI, 78% for dementia Specificity: % Speaker Notes: Notice the poor psychometric properties of the MMSE compared to the SLUMS and MoCA. The MMSE is only able to correctly identify MCI and dementia in 18 and 78 of 100 cases, respectively. Compare this to the robust ability of both the SLUMS and MoCA to detect early cognitive impairment in the same population. The MMSE is a dull instrument and should be replaced by a more sensitive tool. Larner 2012; Nasreddine et all, 2005; Tariq et al., 2006; Ismail et al., 2010

Family Questionnaire www.actonalz.org/pdf/Family-Questionnaire.pdf
Speaker Notes: The Family Questionnaire can be used (if a family member is present) to gauge what and how many signs and symptoms of dementia caregivers have observed. Note that this is not an objective measure of the patient’s cognitive status. It simply reflects the opinion of one caregiver. Therefore, it does not take the place of objective measurement. As caregivers are not experts in brain health, they too are susceptible to bias and over-attribution of memory difficulties as “normal aging” This tool is used as supplementary information for the provider to consider along with an objective cognitive screen. If a patient passes the Mini-Cog but family express concern about declining abilities, a longer more rigorous screen like the SLUMS or MoCA can be used to rule out underlying cognitive impairment. Some patients, particularly those who are well educated, can sometimes pass a simpler screen such as the Mini-Cog but will not perform normally on a more rigorous cognitive exam. The Family Questionnaire is therefore a way to incorporate family observation into clinical decision making.

Cognitive Screening Flow Chart
Speaker Notes: This is the top part of the first page of the Provider Practice tool which guides the provider through the cognitive screening process. The recommended first line tools (e.g., Mini-Cog) are listed in the red banner at the top. The idea is to start with a quick screen that can capture most cases of early dementia. If the patient passes the Mini-Cog and there are no concerns expressed by family members, follow-up with annual cognitive screening. If the patient fails the Mini-Cog and/or family express significant concern about their mental status (Family Questionnaire > 2), the provider has the OPTION of administered a second, more robust screening measure. This second screen is not always necessary but can be used if there are any questions about the patient’s cognitive status or if the provider is concerned about a possible false positive on the Mini-Cog. Update this slide when health equity recommendations are integrated

Cognitive Impairment Identification Flow Chart
Speaker Notes: IF a second cognitive screening tool is used, the instrument offers guidelines about which tools to use as well as associated scoring parameters. When a patient fails a second cognitive screen, the possibility of underlying cognitive impairment is very high and a dementia work-up is strongly recommended. Providers can do the work-up themselves if they are comfortable (another appointment is scheduled for this purpose) OR the patient can be referred to a colleague or memory specialist according to available resources in their system. Update this slide when health equity recommendations are integrated

Dementia Work-up and Diagnosis

Dementia Work-Up Speaker Notes:
The second page of the Provider Practice Tool offers an easy button guide to the dementia work-up. Discuss the way in which the tool provides helpful information to providers along the way, such as education about what types of patients typically benefit from more elaborate or extensive work-ups (including neuropsychological testing) and which are appropriate for a more basic exam and fewer orders. Update this slide when health equity recommendations are integrated

Speaker Notes: Note that the bottom half the page provides reminders about key features of different types of dementia. Although 75% of all dementias are Alzheimer’s there are other dementias that are frequently overlooked and misdiagnosed. Having caregiver(s) present at the time of dementia diagnosis is critical to ensure information is retained by someone in the family and steps are taken to follow through on your recommendations. Update this slide when health equity recommendations are integrated

Dementia Work-Up H&P Objective cognitive measurement Diagnostics
Labs Imaging ? More specific testing (e.g., neuropsychometric)? Diagnosis Family meeting Speaker Notes: An MRI is not always necessary, although neurologists and dementia experts typically prefer it over the CT. If a patient has had neuroimaging in the last year and there have not been any acute events since then, repeating neuroimaging in the dementia work-up is not necessary. Neuroimaging is often negative in the case of Alzheimer’s. It is only later in the disease process that significant atrophy is visualized. Neuroimaging is used primarily to rule out other causes of cognitive disturbance, such as stroke, lesion, or normal pressure hydrocephalus. A normal CT or MRI does not rule out Alzheimer’s.

Dementia Diagnoses Alzheimer’s disease: 60-80 %
Includes mixed AD + VD Lewy Body Dementia: % Parkinson spectrum Vascular Dementia: % Stroke related Frontotemporal Dementia: 2-5 % Personality or language disturbance Speaker Notes: Briefly mention the key features of non-Alzheimer’s dementias Note the hallmark symptom triad in Lewy Body dementia: parkinsonism, early visual hallucinations, and significant fluctuations in cognitive status and alertness from day to day Pure vascular dementia is now known to be fairly rare. Most patients with vascular dementia also have comorbid Alzheimer’s disease because poor vascular health is a risk factor for AD.

Delivering the Diagnosis
General guidelines: Family MUST be present whenever possible Encourage inclusiveness Talk directly to the person with dementia Summarize test results in plain language Avoid complicated medical jargon Try not to fill the time with words – less is more

General guidelines: Explain why tests were ordered and what results mean Review exam with family not present at initial assessment Provide a specific diagnosis and prognosis

General guidelines: Ask more than once whether the patient / family has any questions Ask patient/family to repeat back what they have heard Make sure all family members hear the same message, are on the same page Acknowledge how overwhelming the information feels; provide empathy, support, reassurance

The message is tailored to each patient/family Focus on wellness, healthy living, and optimizing function Sleep Exercise Social and mental stimulation Nutrition and hydration Stress reduction Increase structure at home Zaleta & Carpenter 2010

Connect patient/family to community resources Care for both patient and caregiver Examples: Senior linkage line, Alzheimer’s Association Discuss follow-up Want to see patient and family member at regular intervals (e.g., q 6 months) for proactive care Discuss involvement of care coordinator Provide written summary of visit Speaker Notes: Emphasize that patients and families should be connected to resources and services (such as the Alzheimer’s Association) immediately in all cases of dementia, no matter the stage or symptoms severity. The idea is to be proactive instead of reactive in care since this disease is slowly progressive.

Address immediate problems: Management of medications, finances, meals Driving Home safety Caregiver burnout Social isolation Inactivity/lack of exercise Encourage family involvement/assignments Family need to accompany patient to doctor appts.

Recommend future actions Create a ‘Plan B’ What if primary caregiver is suddenly unavailable? Investigate home care, AL, LTC, other living options Develop transportation options Complete Advance Directives Consider future medical care—how aggressive? Zaleta & Carpenter 2010

Common Questions How is Alzheimer’s different from dementia?
Is there any treatment? What can we do? Does [latest news report] work? How fast is this going to progress? How often do we see you? What’s next? Speaker Notes: Providers should anticipate these common questions which are frequently asked by patients and caregivers. If time allows, ask the audience how they would respond to these or other questions they have received.

Delivering the Diagnosis: Sam
Speaker Notes: Watch this video which is one example of how to disclose a diagnosis of Alzheimer’s disease to a patient and family member in primary care. Along the way, keep in mind what things the provider does well and what things could be done better or differently. This is a real patient, a real caregiver (family member), and real provider. No actors.

Delivering the Diagnosis: Sam
Discussion Observations? Reactions? What was done well? What could have been done differently, better? What elements would you incorporate into your practice? If Sam was American Indian what, if anything, would you do differently? Speaker Notes: The last question is intended to spark conversation about cultural competence and why it matters in the case of dementia. Providers may not be aware of the resources available to them concerning memory loss in patients from various cultural backgrounds. Remind audience that ACT tools and the website offer many resources on this topic.

Dementia Care and Treatment

Care and Treatment Speaker Notes:
This is the third page of the Provider Practice tool which shows an easy-button approach to management of patients with dementia. Along the left had side in red banners are the top issues of concern that many providers will experience. On the right across from these banners are recommended guidelines and resources. Mention a few as examples

Care and Treatment Speaker Notes:
Notice the very last category listed is medication. This is intentional and is meant to reflect the fact that medication treatment, while potentially important for some patients, does not represent the bulk of what patients and families need. In fact, medications are often a small piece of the overall care of these patients. What is typically most important is education about Alzheimer’s and connection to community resources.

Treatment: Medications
Cholinesterase inhibitors Donepezil, Rivastigmine, Galantamine, Cognex Possible side effects: nausea, vomiting, syncope, dizziness, anorexia NMDA receptor antagonist Memantine Possible side effects: tiredness, body aches, dizziness, constipation, headache Speaker Notes: Note that donepezil is approved for all stages of dementia. Memantine is typically an adjunct, add-on therapy for use in mid to late stage dementia. The goal of medication therapy is to lessen the slope of decline in patients’ cognitive and functional status. The drugs do not typically improve a patient’s condition per se but may keep them steady or their symptoms more stable for a longer period of time. Therefore, if “improvement’ is not readily observed by patients, family members, or providers it does not mean that medications are not having any benefit.

Care and Treatment The care for patients with Alzheimer’s has very little to do with pharmacology and more to do with psychosocial interventions Involve care coordinator Connect patient and family to experts in the community Example: Alzheimer’s Association Refer every time, at any stage of disease, and for every kind of dementia Stress this is part of their treatment plan and you expect to hear about their progress at next visit Speaker Notes: Physicians do not need to be experts in all of the social services that exist for people with dementia in the community. Instead, they just need to refer families to a one-stop shop, such as a care coordinator in their system or to the local chapter of the Alzheimer’s Association. These professionals can then pick up where the physician leaves off.

After A Diagnosis Partnering with doctors Understanding the disease
Planning ahead How to ask for help Using community resources Role of care coordinator Speaker Notes: This tool speaks directly to patients and families and can be provided as a handout at the time of diagnosis. The tool guides the family in how to partner more effectively with doctors, empowers them to ask questions and seek out information and support, and educates them on the role of care coordinators.

ACT EMR Tools Use EMR to automate and standardize: Screening Work-up
After visit summary with dementia education Orders and referrals Community supports Speaker Notes: Few providers use paper charts anymore. All of the ACT provider tools (i.e., screening, work-up, and treatment guidelines) are not only available in paper form, but also for use directly in the electronic medical record. The guidelines or “order sets” can be used inside any EMR program. They can be modified and tailored according to each system’s preferences, available resources, and workflow. The ACT guidelines essentially provide a recipe for how to implement each component of the tools in the EMR. What follows is several screenshots of how the tools are used in the EMR, using EPIC as an example.

Screening Speaker Notes:
This screenshot shows how cognitive screening, in this case with the MoCA, is integrated into the EMR. When you want to use the MoCA, you simply bring up this orderset on the screen. You can click on the link called “instructions for administering the MoCA” to immediately bring up the tool and instructions on the screen. These can be printed if needed. The order set also shows the cut-off score for the instrument and provides a working diagnosis should a dementia work-up be necessary.

Labs and Orders Speaker Notes:
This screen shows components of the dementia work-up. Options such as CT and MRI are shown along with education about when these diagnostics are necessary and when they are not. An option to refer the patient to a colleague with dementia expertise or a specialist (e.g., neurologist or dementia center) is also shown. Note that all of these options can be changed and tailored according to what resources or preferences may exist in any given health system.

Consults and Referrals
Speaker Notes: The treatment/intervention order set (which is used after a diagnosis of dementia is rendered) shows all kind of possible referrals for the patient and family. They are shown all together here but each one can be expanded for more detail which I will show you on the next slide.

Consults and Referrals
Speaker Notes: In this example, you see that some of the referrals have been expanded. If your system has a preferred referral for driving evaluations you can include that in the order set. In this particular example, the health system has their own occupational therapist who provides these evaluations but the referral could just as easily reference an outside agency or program. This expanded view also shows potential orders for a PharmD consult for concerns about medication management. Again, this can be tailored to each system’s preferences. Note that the order set also includes helpful patient education. When one of the boxes is clicked, a print-out is auto-populated with relevant information that is then printed out in the form of an after visit summary.

Pharmacological Treatment
Speaker Notes: Here is another screenshot showing the guidelines for medication treatment, including recommendations for initial dosing, titration instructions, as well as guidelines for treating depression and other neuropsychiatric symptoms in the setting of dementia.

Managing Mid to Late Stage Dementia

Managing Dementia Across the Continuum
Speaker Notes: This ACT tool is specifically tailored to guiding the provider in the management of patients with mid to late stage dementia. Quickly review the topics covered in the tool by reading the bullet points in the yellow box. Discuss dementia as an organizing principle in the management of patients’ health conditions

Mood and Behavioral Symptoms
Neuropsychiatric symptoms common: 60% of community dwelling patients with dementia > 80% of nursing home residents with dementia Nearly all patients with dementia will suffer from mood or behavioral symptoms during the course of their illness Speaker Notes: One of the issues that can be uncomfortable or challenging for providers is the management of neuropsychiatric symptoms in patients with dementia. This tool address common issues and simplifies the treatment approach Ferri et al., 2005; Jeste et al., 2008

Adverse Outcomes Decreased quality of life
Increased hospital length of stay Increased system-wide costs Increased caregiver distress, depression, burnout Independently associated with NH placement ? Increased mortality Jeste et al., 2008; Finkel et al., 1996

Speaker Notes: Panic! This is how many providers feel when their patients with dementia present with difficult behaviors, hallucinations, delusions, agitation, and other neuropsychiatric symptoms.

ACT to the Rescue!

Systematic Approach to Management
Step 1: Define behavior Step 2: Categorize target symptom Step 3: Identify reversible causes Step 4: Use non-drug interventions first to treat target symptoms Speaker Notes: Addressing neuropsychiatric symptoms in a systematic manner can be extremely beneficial. One important lesson is that not all behaviors require treatment with medication. Many, in fact, can be addressed successfully by looking carefully at antecedents, triggers, and unmet needs.

Step 1: Define Behavior Examples Attention seeking behaviors
Verbal outbursts Aggression during cares Hitting, pushing, kicking Sexual disinhibition Restless motor activity, pacing, rocking Calling out Speaker Notes: Caregivers use different words to describe the behaviors they observe. They often add their own interpretation or attributions to these behaviors as well based upon their own experiences and unique perspective and biases. It is important to ask questions to clarify as specifically as possible what types of behaviors are occurring and in what setting.

Step 2: Categorize Target Symptom
Psychosis Delusions Hallucinations Mood symptoms Anxiety Dysphoria Irritability Lability Aggression Spontaneous disinhibition Speaker Notes: After adequately defining the behavior, in what category would the symptoms be best placed?

Step 3: Identify Reversible Causes
Delirium Untreated medical illness (e.g., UTI) Medication side effects, polypharmacy Environmental triggers Undiagnosed psychiatric illness Inexperienced caregivers Unrealistic expectations Speaker Notes: Before jumping immediately to medication treatment, consider common reversible causes of agitation and other neuropsychiatric symptoms

Common root causes: Anxiety, fear or uncertainty Touch or invasion of personal space Loss of control, lack of choice Lack of attention to personal needs or wishes Frustration, grief due to loss of function or ability Pain or fear of pain Speaker Notes: Behavior is a form of communication. As the person with dementia loses the ability to articulate their feelings and needs verbally, their behavior becomes the primary mode of communication. Ask, what is the patient trying to communicate with this behavior? Could it be related to anxiety, pain, or other factors?

Unmet needs Boredom Meaning, purpose Over/under stimulation Safety Environmental stressors Caregiver reactions Limited knowledge about disease process or behaviors Speaker Notes: Many patients with dementia have little to do to occupy their time. When people are bored and under-stimulated, restlessness and agitation is common. Sometimes it is important to ask yourself as a provider, is this patient’s behavior really a problem? And for whom (the patient or the caregiver)? Sometimes family members have unrealistic expectations that need to be managed. This is where a care coordinator, social worker at the Alzheimer’s Association, or similar referral can be very beneficial. Often times these resources can assist caregivers in thinking differently about the patient’s behaviors and brainstorming ways to address them through behavioral and environmental modifications.

Step 4: Non-pharmacologic Interventions
REMEMBER: behavior is communication Think like a behavioral analyst Detective work, ask: Who (is involved/present) What (exact description, be specific) When (time dependent? only in morning? triggers?) Where (location specific?) Why (what happens right before, right afterwards? what do family think is cause?) ABC approach (antecedent, behavior, consequence)

Step 4: Non-pharmacologic Interventions
Activity planning Tap into preserved capabilities and previous interests Involve repetitive motion Communication Slow down, offer simple choices Help individual find words for self expression Simplify Environment Remove clutter, minimize stimuli during activity Caregiver support Self care, minimize confrontation/arguing with loved one Identify support network Speaker Notes: Be proactive: WRITE ORDERS FOR THESE INTERVENTIONS Train caregivers to validate, reassure, and distract Emphasize routine, routine, routine Optimize level of stimulation. Educate family members that the optimal level of activity and stimulation for the person with dementia will change throughout the course of the illness Gitlin, et al., 2012

Speaker Notes: This resource is referenced in the mid-to-late stage management tool. It lists possible neuropsychiatric and other behaviors common in dementia on the left and non-pharmacological interventions for those behaviors on the right.

Pharmacological Treatment
Antipsychotics Antidepressants Mood stabilizers Cognitive enhancers

Antipsychotic Medications in Dementia
1952: First generation antipsychotic: haloperidol Extrapyramidal symptoms Tardive dyskinesia 1989: Second generation antipsychotic: clozapine Agranulocytosis 1990’s: More second generation antipsychotics Risperidone, olanzapine, quetiapine, ziprasidone, aripiprazole Less motor side effects, better tolerated Utilization of these agents broadens THEN in 2005 … Jeste et al., 2008

2005 FDA Box Warning Elderly patients with dementia-related psychosis treated with atypical antipsychotic drugs are at an increased risk of death compared to placebo.

Bottom Line with Atypical Antipsychotics
Modest efficacy in the treatment of psychotic and neuropsychiatric symptoms Increased risk of negative outcomes: DEATH, STROKE, HIP FRACTURE, FALLS Share the decision with healthcare proxies Monitor: Falls, orthostatic BP, EPS, tardive dyskinesia, glucose Regularly attempt to wean/discontinue Speaker Notes: The main point here is that medication treatments are limited and can have serious consequences. Medications should not be the first-line intervention for behavioral symptoms in most cases. Environmental and non-pharmacological strategies are preferred when possible. Medication treatment is a back-up strategy when behaviors are more serious, cannot be modified with other techniques, and pose a risk to the safety or well being of the patient or others.

Optimizing Medication Therapy
Professional Resources AGS Beers Criteria (2012) START (Screening Tool to Alert Doctors to the Right Treatment) STOPP (Screening Tool of Older Persons’ Potentially inappropriate Prescriptions)

Advanced Care Planning
Discussion of goals of care, values Identification AND engagement of HCPOA Honoring Choices PREPARE Introduce concept of palliative care, educate about hospice Document in EMR, healthcare directive Provider Orders for Life Sustaining Treatment (POLST) Speaker Notes: The tendency in medicine is to wait until patients are quite ill before discussing advanced care directives and palliative care. In the case of dementia and other chronic conditions, earlier discussion with the patient and/or family can be highly beneficial. More and more health systems are prioritizing advanced care planning and documentation of these discussions and directives in the chart

Assessing Caregiver/Family Needs
Be alert for signs of: Burnout, depression, neglected self-care, elder abuse Promote: Respite services Support groups Activities to optimize health and well-being Refer to one-stop-shop for support: Alzheimer’s Association Senior Linkage Line

Patient Engagement: Research Participation
Alzheimer’s Association Trial Match Free, easy-to-use clinical studies matching service that connects individuals with Alzheimer's, caregivers, healthy volunteers and physicians with current studies. National Institute of Health (NIH)

HIPAA: Q & A HIPAA (Health Insurance Portability and Accountability Act) Federal law that protects medical information Allows only certain people to see information Doctors, nurses, therapists and other health care professionals on the patient’s medical team Family caregivers and others directly involved with a patient’s care (unless the patient says he/she does not want this information shared with others) Speaker Notes: Communicating with a Patient’s Family, Friends, or Others Involved in the Patient’s Care US Department of Health & Human Services, Office for Civil Rights If the patient is present and has the capacity to make health care decisions, a health care provider may discuss the patient’s health information with a family member, friend, or other person if the patient agrees or, when given the opportunity, does not object. If the patient is not present or is incapacitated, a health care provider may share the patient’s information with family, friends or others as long as the health care provider determines, based on professional judgment, that it is in the best interest of the patient. HIPAA does not require that a health care provider document the patient’s agreement or lack of objection. The patient’s health information may be shared face-to-face, over the phone, or in writing. HIPAA allows health care providers to use professional judgment and experience to decide if it is in the patient’s best interest to allow another person to pick up a prescription, medical supplies, X-rays, or other similar forms of information for the patient. HIPAA allows covered health care providers to share patient’s health information with an interpreter without the patient’s written authorization under the following circumstances: Can share with an interpreter who works for the provider Can share with an interpreter who is acting on the provider’s behalf Can share with an interpreter who is the patient’s family member, friend, other other person identified by the patient as his or her interpreter United Hospital Fund, 2002 Family caregivers need medical information so that they can better manage and provide care for a patient. For example, they need to know what medical problem the person is being treated for. They need to know the names of the medications the doctor orders, why the doctor thinks the patient needs them, and what side effects to look out for. Sometimes there is more than one family caregiver. If so, it is a good idea to choose only one person to talk with the patient’s doctor or medical team. This person can then share important information with health care professionals or other family caregivers. Some hospitals or other health care facilities ask patients to sign written consent forms before doctors discuss medical information with family caregivers. This is NOT part of the HIPAA law, but may be part of the health care facility’s procedures. If families have a problem getting medical information, talk with the social worker, patient representative, or privacy officer. United Hospital Fund, 2002

HIPAA: Sharing Patient Information
If the patient is present and has the capacity to make health care decisions: Health care providers may discuss the patient’s health information with a family member, friend, or other person if the patient agrees or, when given the opportunity, does not object. If patient is not present or is incapacitated: Health care providers may share the patient’s information with family, friends or others as long as the provider determines (based on professional judgment) that it is in the best interest of the patient. Speaker Notes: Communicating with a Patient’s Family, Friends, or Others Involved in the Patient’s Care US Department of Health & Human Services, Office for Civil Rights If the patient is present and has the capacity to make health care decisions, a health care provider may discuss the patient’s health information with a family member, friend, or other person if the patient agrees or, when given the opportunity, does not object. If the patient is not present or is incapacitated, a health care provider may share the patient’s information with family, friends or others as long as the health care provider determines, based on professional judgment, that it is in the best interest of the patient. HIPAA does not require that a health care provider document the patient’s agreement or lack of objection. The patient’s health information may be shared face-to-face, over the phone, or in writing. HIPAA allows health care providers to use professional judgment and experience to decide if it is in the patient’s best interest to allow another person to pick up a prescription, medical supplies, X-rays, or other similar forms of information for the patient. HIPAA allows covered health care providers to share patient’s health information with an interpreter without the patient’s written authorization under the following circumstances: Can share with an interpreter who works for the provider Can share with an interpreter who is acting on the provider’s behalf Can share with an interpreter who is the patient’s family member, friend, other other person identified by the patient as his or her interpreter United Hospital Fund, 2002 Family caregivers need medical information so that they can better manage and provide care for a patient. For example, they need to know what medical problem the person is being treated for. They need to know the names of the medications the doctor orders, why the doctor thinks the patient needs them, and what side effects to look out for. Sometimes there is more than one family caregiver. If so, it is a good idea to choose only one person to talk with the patient’s doctor or medical team. This person can then share important information with health care professionals or other family caregivers. Some hospitals or other health care facilities ask patients to sign written consent forms before doctors discuss medical information with family caregivers. This is NOT part of the HIPAA law, but may be part of the health care facility’s procedures. If families have a problem getting medical information, talk with the social worker, patient representative, or privacy officer. United Hospital Fund, 2002

Top 5 Resources for Patients and Families Speaker Notes:
There are many good services and programs available for people with dementia and their family members. Keeping track of them all can be difficult. This is why referring patients to a one-stop shop kind of resource can be very helpful. What follows is a list of 5 key resources and support services that offer direct benefits to patients and family members in the context of a dementia diagnosis.

#1 Promoting Wellness & Function
Speaker Notes: This is a free resource (short booklet) published by the Alzheimer’s Association. You can call the local chapter for copies which can be distributed to patients and families. Two years of research went into its development. The book includes concrete recommendations based upon research on lifestyle modifications that have been shown to help people with dementia promote functional ability and brain health. It is empowering, action-oriented, and easy to read. It covers topics such as exercise, nutrition, health management (managing numbers in hypertension and diabetes, optimal sleep hygiene, alcohol use, etc.), stress reduction, meaning and purpose, establishing a routine, etc. Many patients and families ask what else they can do aside from take medication. This resource is their guide.

#2 Addressing Behavioral Challenges
Speaker Notes: The first resource, “Understanding Difficult Behaviors”, was written for professionals although many family members also find it extremely useful. It is jam packed with descriptions of all kinds of behavioral challenges and offers many creative, useful non-pharmacologic strategies and interventions. Although it offers many ideas and strategies, the booklet is a manageable size (workbook length). This is really a gem. It can be ordered online through Amazon or other retail outlets. The second resource, “Coach Broyle’s Playbook for Alzheimer’s Caregivers”, is also an excellent go-to guide for family members. It is free and can be ordered online by Googling the title. Buyers pay only shipping charges. Clinics can order them in bulk for distribution to patients. Coach Broyles was a football coach and his wife had dementia. He offers many very loving approaches to dealing with a myriad of challenging behaviors and scenarios. The book is nicely organized into early, middle, and late stage dementia. The third resource, “The Alzheimer’s Action Plan”, is essentially an A-Z guide for all things related to Alzheimer’s disease. It answers many of the questions that caregivers have about dementia including everything from the biology to symptom progression to care and treatment.

#3 Caregiver Support Alzheimer’s Association
| One stop shop for: Care Consultation Support Groups (Memory Club) 24/7 Helpline Speaker Notes: The Alzheimer’s Association is an excellent example of a one-stop shop for patients and caregivers. They provide an indescribable array of services that are tailored to each family. Most are free or very low cost. Describe what “care consultation” is as many providers are not familiar with the term (e.g., 1:1 meeting involving patient and family members or just the family and led by a social worker with dementia expertise to provide disease specific education, answer questions about Alzheimer’s or related dementia, clear up expectations, assess current needs, provide a link to resources and services, and begin thinking about and planning for the future). The Alzheimer’s Association helps patients and families dealing with any type of neurodegenerative disease, not just Alzheimer’s so those with Lewy Body dementia, FTD, vascular dementia, etc. can still be referred.

#4 In-depth Caregiver Training
Family Memory Care Program 4+ months of 1:1 support, care coordination Individual and family meetings Dementia-capable trained clinician Speaker Notes: Family Memory Care is Minnesota’s translation of an intervention that has been extensively studied and shown to significantly improve outcomes for both patients and family members. The program is available state-wide. Local Family Memory Care consultants can be identified by calling the Alzheimer’s Association at the number on the screen. A dementia expert who has been specifically trained in the intervention provides the service. It is often free or low cost (sliding fee scale). The program provides a minimum of 4 months of direct, 1:1 support (combination of in-person and phone contacts) for family members. Follow-up over many more months is also often included, as necessary. This can be a real game-changer for families and is essentially a training program to teach them how to be dementia capable at home.

#5 Medication Review PharmD Consult Medication review, simplification
Reminder strategies Family support, supervision Speaker Notes: Many geriatric patients suffer ill effects from polypharmacy. In the setting of dementia, management of multiple medications becomes increasingly difficult. A referral to a PharmD for a medication review can be very useful in the context of a dementia diagnosis. Simplification of treatment is almost always a good thing. Many pharmacists will include recommendations for medication reminder strategies and offer instructions for family members for becoming more involved in the patient’s medication administration when needed. A PharmD consult is typically offered by health care systems at no charge to patients.

ACKNOWLEDGEMENTS This project is/was supported by funds from the Bureau of Health Professions (BHPr), Health Resources and Services Administration (HRSA), Department of Health and Human Services (DHHS) under Grant Number UB4HP19196 to the Minnesota Area Geriatric Education Center (MAGEC) for $2,192,192 (7/1/2010—6/30/2015). This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by the BHPr, HRSA, DHHS or the U.S. Government. Minnesota Area Geriatric Education Center (MAGEC) Grant #UB4HP19196 Director: Robert L. Kane, MD Associate Director: Patricia A. Schommer, MA

References & Resources
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Finkel, SI (Ed.) (1996). Behavioral and Psychological Signs of Dementia: Implications for Research and Treatment. International Psychogeriatrics, 8(3). Folstein MF, Folstein SE, & McHugh PR (1975). "Mini-mental state". A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res, Nov 12(3): Gallagher P & O’Mahony D (2008). STOPP (Screening Tool of Older Persons’ potentially inappropriate Prescriptions): Application to acutely ill elderly patients and comparison with Beers’ criteria. Age and Ageing, 37(6): Gitlin LN, Kales HC, Lyketsos CG, & Plank Althouse E (2012). Managing Behavioral Symptoms in Dementia Using Nonpharmacologic Approaches: An Overview. JAMA, 308(19): Holroyd S, Turnbull Q, & Wolf AM (2002). What are patients and their families told about the diagnosis of dementia? Results of a family survey. Int J Geriatr Psychiatry, Mar;17(3): Ismail Z, Rajji TK, & Shulman KI (2010). Brief cognitive screening instruments: An update. Int J Geriatr Psychiatry, 25:111–20. Jeste DV, Blazer D, Casey D et al. (2008). ACNP White Paper: Update on Use of Antipsychotic Drugs in Elderly Persons with Dementia. Neuropsychopharmacology, 33(5): Larner AJ (2012). Screening utility of the Montreal Cognitive Assessment (MoCA): In place of – or as well as – the MMSE? Intern Psychogeriatrics, 24, 391–396. Lin JS, O’Connor E, Rossom RC, Perdue LA, Burda BU, Thompson M, & Eckstrom E (2014). Screening for Cognitive Impairment in Older Adults: An Evidence Update for the U.S. Preventive Services Task Force. Agency for Healthcare Research and Quality, Evidence Syntheses, 107. Long KH, Moriarty JP, Mittelman MS, & Foldes SS (2014). Estimating The Potential Cost Savings From The New York University Caregiver Intervention In Minnesota. Health Affairs, 33(4), McCarten JR, Anderson P Kuskowski MA et al. (2012). Finding dementia in primary care: The results of a clinical demonstration project. J Am Geritr Soc;60(2):

Mittelman MS, Haley WE, Clay OJ, & Roth DL (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer disease. Neurology, November 14(67 no. 9), Nasreddine ZS, Phillips NA, Bédirian V, Charbonneau S, Whitehead V, Collin I, Cummings JL, & Chertkow H. (2005). The Montreal Cognitive Assessment, MoCA: A Brief Screening Tool For Mild Cognitive Impairment. J Amer Ger Soc, 53(4), National Chronic Care Consortium and the Alzheimer’s Association Family Questionnaire. Revised 2003. Silverstein NM & Maslow K (Eds.) (2006). Improving Hospital Care for Persons with Dementia. New York: Springer Publishing CO. Tariq SH, Tumosa N, Chibnall JT, Perry MH, & Morley E. (2006). Comparison of the Saint Louis University mental status examination and the mini-mental state examination for detecting dementia and mild neurocognitive disorder: A pilot study. Am J Geriatr Psychiatry, Nov;14(11): Turnbull Q, Wolf AM, & Holroyd S (2003). Attitudes of elderly subjects toward “truth telling” for the diagnosis of Alzheimer’s disease. J Geriatr Psychiatry Neurol, Jun;16(2):90-3. Zaleta AK & Carpenter BD (2010). Patient-Centered Communication During the Disclosure of a Dementia Diagnosis. Am J Alzheimers Dis Other Demen, 25, 513.

2012 Updated AGS Beers Criteria: Alzheimer’s Association Family Questionnaire: Alzheimer’s Association (2009). Know the 10 signs. Coach Broyles Playbook on Alzheimer’s: Honoring Choices Minnesota: Living Well workbook: Medicare Annual Wellness Visit: MiniCog™ Montreal Cognitive Assessment (MoCA) National Alzheimer’s Project Act: Next Step in Care: Physician Orders for Life Sustaining Treatment (POLST): St. Louis University Mental Status (SLUMS) examinationhttp://medschool.slu.edu/agingsuccessfully/pdfsurveys/slumsexam_05.pdf The Alzheimer’s Action Plan: Understanding Difficult Behaviors:

An A- Z Guide to Simplify and Optimize Dementia Care

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