f5 - a community and patien-centered approach to alzheimer ...€¦ · 54 million hours of unpaid...

8/28/2018

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MONTANA ALZHEIMER’S WORK GROUP

Meeting the Needs of Individuals with Alzheimer’s and their

Caregivers:A Community‐ and Patient‐Centered Approach to Care

Miranda Meunier, GNP‐BC

MHA

9/21/18

Sponsored By:


Objectives

1. Identify why dementia is a public health crisis.

2. Describe the 10 signs of dementia.

3. Define proper dementia management resources.


Overall GoalImprove the care and support of patients in Montana with Alzheimer’s Disease and related dementias (ADRD), and their families and caregivers, across all stages of the disease by:

• Raising public awareness of ADRD• Increasing early disease detection• Ensuring best practice approaches to management of

disease and associated psychosocial issues• Identifying and addressing caregiver burden• Improving quality of life for patients, their families and

caregivers • Developing a comprehensive approach at an individual,

community, and statewide level

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Why Alzheimer’s Disease and Related Dementias (ADRD)?

High morbidity and mortality• Sixth leading cause of death in United States

A Public health crisis• Number of Americans with Alzheimer’s disease is

growing – and growing fast. Currently 5.5 million Americans living with AD

• Financial burden is high and increasing

Devastating toll on caregivers• Financial burden

• Physical and emotional issues


Alzheimer’s is a Public Health CRISISOf the top 10 leading causes of death in the U.S., Alzheimer’s is the only

one without a way to prevent, treat or cure it.

1. Heart Disease

2. Cancer

3. Respiratory Diseases

4. Stroke

5. Accidents

6. Alzheimer’s Disease

7. Diabetes

8. Kidney Disease

9. Influenza and Pneumonia

10. Suicide

NO


The Burden is Large

Across the Nation…• More than 5 million Americans are living with

Alzheimer’s disease, including an estimated 200,000 individuals under age 65 with younger‐onset Alzheimer’s.

• This number is set to reach as many as 16 million by 2050.

In Montana…• There are 20,000 people aged 65 and older who

are living with Alzheimer’s in Montana – 11% of seniors.

• This number is set to reach as many as 27,000 by 2025.

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The Burden is Large


Costs are High

• Total national cost of caring for people with Alzheimer’s and other dementias will reach $214 billion in 2014.

• That number is set to reach $1.2 trillion in 2050.

• Individuals with Alzheimer’s disease and other dementias are high users of health care, long‐term care and hospice services.


• Individuals with dementia: • Have a higher number of chronic

conditions• Have higher rates of hospitalizations (2‐

3x more than individuals without dementia)• More expensive • Longer length of stay

Costs are High

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Significant Toll to CaregiversAcross the Nation…

In 2013: 15.5 million unpaid caregivers =

$220 billion contribution

In Montana…In 2013:

48,000 unpaid caregivers = 54 million hours of unpaid care =$677 million contribution and

$28 million in caregiver health care costs


Even without a way to prevent, cure, or even slow the progression of Alzheimer’s, there are ways to improve care management, access to services, and quality of life and reduce costs for those suffering from the disease and their caregivers.

Alzheimer’s disease:there are ways to intervene


State Government Alzheimer’s Disease Plans

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Beginnings

What can we do? Right now?


How a Montana Alzheimer’s State Plan Can Achieve Goal

• Elevate Alzheimer’s disease and other dementias as a priority for patient advocacy agencies, health care providers and organizations, state policy makers, and Montana communities.

• Address the Alzheimer’s disease epidemic comprehensively and collaboratively.

• Identify resources and gaps in dementia‐related care and services.

• Identified gaps in care may be appropriate for comparative effectiveness research studies.


Dementia Defined

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Normal Age‐Related Cognitive Changes

Common Forms of DementiaCommon Forms of Dementia



Signs of Alzheimer’s Disease

1. Memory loss that affects daily life• Forgetting recently learned information

• Increasingly reliant on memory aides

• Asking for same information over and over

2. Challenges in planning or solving problems• May have trouble following a familiar recipe or keeping track of

bills

• May take much longer to finish tasks

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3. Difficulty completing familiar tasks• Driving

• Remembering rules of a favorite game

4. Confusion with time or place• Loose track of dates, seasons

• May forget where they are or how they got there



5. Trouble understanding visual images and spatial relationships• Difficulty judging distances or determining color/contrast

6. New problems with words in speaking or writing• Word finding difficulty is common

• May have difficulty joining or following a conversation



7. Misplacing things and losing ability to retrace steps

• Sometimes can accuse others of stealing lost items

• Often put things in unusual places

8. Decreased or poor judgement• Often plays out with poor spending habits

• May pay less attention to grooming

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9. Withdrawal from work or social activities

10. Changes in mood and personality

• Depressed, anxious, and suspicious

• Can become easily upset when outside of their comfort zone


Dementia Defined

Alzheimer's Disease – caused by protein plagues (amyloid) and tangles (tau) that cause neuronal damage

• Early stages: Difficulty remembering conversations, names or events, depression, withdrawal

• Later stages: Impaired communication, disorientation, behavioral changes

• End stages: Little to no communication, significant mobility impairment, swallowing difficulties


Natural history of Alzheimer's Disease

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Risk Factors• Age (Risk doubles every 5 years after the age of 65)

• Family history

• Genetics

• Low level of education

• Lack of social engagement

• Race

• African Americans at 2x higher risk

• Hispanics at 1.5 higher risk


Risk Factors• Women at higher risk than men

• Over the age of 60, women are twice as likely to develop dementia vs. breast cancer

• Head trauma• Moderate injury 2‐3 times more likely to develop dementia

• Severe injury 4‐5 times more likely to develop dementia

• Smoking

• Obesity, especially in midlife

• Decreased physical activity

• Poor diet


Risk Factors• Medical Conditions

• Hypertension, especially in midlife

• Heart disease

• Stroke

• Diabetes

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Causes of Dementia• Precise changes in the brain largely unknown

• Probably develops as a result of complex interactions between:

• Age

• Genetics

• Environment

• Lifestyle

• Coexisting medical conditions


Dementia Defined

Current research is understanding more and more about these diseases all the time, but until they are understood comprehensively, there will be likely be no disease modifying treatment options.


Importance of Early Recognition

• Promotes autonomy and allows affected individual to be involved in decision‐making regarding wishes for future care and have increased ability to plan for the future with their loved ones.

• Early diagnosis will be key for effective use of newly emerging treatments which theoretically will be most successful in earlier stages of the disease.

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Lack of Diagnosis

• AD under‐recognized by providers

• Less than 50% of patients receive formal diagnosis

• Diagnosis typically delayed on average by 6+ years after symptom onset

• Poor timing: Diagnosis frequently at time of crisis – hospitalization, failure to thrive, institutionalization


Lack of DiagnosisReasons for failure to diagnosis

• Uncertainty about the need for and utility of a specific diagnosis

• Time constraints

• Reimbursement issues

• Limited treatment options or resources

• Lack of confirmatory measures to definitively diagnose – labs, radiologic exams, etc.


Lack of DiagnosisReasons for failure to diagnosis• Attribution error ‐ "After all, she's 80

years old!"

• Changes missed due to familiarity with patient

• Focused nature of focused outpatient visits

• Family compensates or covers up for patient

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Patient Perspective


• Improve management of comorbid conditions• Reduce ineffective, expensive, and crisis‐driven use of healthcare

• Optimize quality of life by setting proper/realistic expectations for the future and decrease burden on family/caregivers

• Prioritize shared decision making• Promote a safe and happy environment that supports independence

The message: You have a bad disease but there are things we can do to make life better for you and your family.

Rationale for Timely Diagnosis


• Mini‐cog/MMSE

• If positive, consider more advanced screening like the MOCA (see handouts)

• Should be part of Medicare Annual Wellness visits

• Screening does not have to be done by physician/NP/PA

• Consider functional screening as well• Further testing should be done if screening tests come back positive to rule out other causes of memory loss

Screening

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Dementia Screens


Dementia Screens

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Dementia Screens


Dementia Screens

Important to note that dementia screens can correspond with disease severity but actual disease staging is based on both cognitive and functional abilities.

• Mild: Instrumental ADLs are affected, primarily memory and visual‐spatial deficits with mild difficulty with day to day decision making (first 2‐3 years, MMSE 20‐24)

• Moderate: Basic ADLs are affected. Aphasia and apraxia more pronounced. May show neuropsych sx like paranoia. (3‐6 years after diagnosis, MMSE 11‐20)

• Severe: Fully dependent on ADLs. Severe language disturbances, more pronounced behavioral changes, gait disturbances, incontinence. (6‐10 years after diagnosis)


Differential Diagnosis/Potential modifiable causes of memory loss•Delirium

•Depression or other mental health diagnosis•Substance abuse•Anoxia - OSA, COPD•Metabolic or toxic encephalopathy•Infection•Neoplasms•NPH

•Neurodegenerative disease: Parkinson's, MS, PSP•Thyroid, B12, Vitamin D, Electrolyte abnormalities•Anemia, Hypoglycemia•Drug toxicity•Liver disease•Seizure disorder

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Differential Diagnosis

Common Features Hallmarks

Delirium Subjective confusion

Difficulty performing tasks

“Not right” on interview

Loves ones are worried

• Trouble with attention and concentration• Rapid onset; waxing and waning• Due to medical cause

Dementia • Problems with memory plus problems with speech, actions, recognition, or executive functioning

• Chronic and progressive, slow onset• Functional decline

Depression • Decreased concentration and interest• Sensorium is clear


Management

• Care for individuals with dementia has very little to do with drugs

• Medications are not disease modifying

• Modest benefit in slowing expression of cognitive and functional symptoms in some patients

• Focus on psychosocial interventions• Involve care coordinator

• Connect individual/family with community resources


Management

Management goals for individuals with dementia:

• Individualized based on patient and family wishes and goals

• Maintain/improve quality of life

• Maximize function in daily activities

• Enhance cognition, mood, and behavior

• Foster a safe environment

• Promote social engagement

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A Community Effort


Barriers to Implementation

• Shortage of health care professionals trained to treat older adults• Need additional 3.5 million by 2030, over 1 million direct

care workers needed by the end of the year

• Currently half the number of certified geriatricians needed

• Less than 1% of RNs, APRNS, PAs, and pharmacists identify as geriatric

• Many not adequately trained to manage dementia



• Workforce shortage causes

• High turnover rates

• Difficult recruitment

• Low end pay for hard work

• Political forces

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• Caregiver stress and burnout


Caregiver Responsibilities

• Dressing, bathing, toileting, feeding

• Shopping, meal prep, transportation

• Medication management

• Financial management

• Emotional support

• Often results in complete dependence


Caregiver Hardships• Financial hardship • May loose income and savings• Increased reliance on public programs

• Stigma• Vulnerable to stress• 60% rate emotional stress as high or very

high• 40% suffer from depression

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Agitation in Dementia• Types of agitation

• Nonaggressive – restlessness, pacing, wandering, repetition

• Aggressive – physical, aggression, cursing, irritability

• Psychotic – hallucinations, delusions, paranoia

• Anxiety, depression, insomnia common

• Use of antipsychotics

• Limit use to severe agitation, not for nonaggressive behaviors

• Treat anxiety, depression, insomnia with specific agents

• Use of antipsychotics in dementia is OFF‐LABEL PRESCRIBING


Agitation in Dementia• Initial Assessment – Identify

possible underlying causes• Delirium• Medication side effects• Pain• Depression/anxiety• Sleep disorders• Sensory deficits• Personal needs ‐ dirty, hungry, lonely


Agitation in Dementia• Nonpharmacologic methods ‐ General

• Activities – repetitive activities (folding, putting coins in a container) can be distracting

• Respect the individual's thought even if they are incorrect

• Speak in a calm and slow voice, avoid negative words and/or tone

• Redirect individual• Validate feelings• Simply environment – eliminate distractions• Simplify tasks

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Agitation in Dementia

• Nonpharmacologic methods –interventions• Aromatherapy

• Exercise

• Music

• Pet therapy

• Touch therapy

• Light therapy



• Caregiver education and support

• Behaviors not intentional

• Don’t argue with their reality

• Identify and draw on support network



• Antipsychotics• Risperdal• Zyprexa• Seroquel• Citalopram – can help with sx of paranoia nd agitation• Little data exists to support use in dementia• Use only when other causes for behaviors have been ruled

out or nonpharmacologic methods failed• Increased mortality in elderly patients with dementia• Monitor for side effects:

• Sedation• Movement disorders• Hypotension, arrhythmias• Anticholinergic effects

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Support Services

• Support groups, caregiver education

• Wellness programs

• Legal and financial services

• Residential care

• Adult day care

• Transportation

• Respite care

Current Needs for the Person with ADRD and Their Caregiver(s)


Community Resources

• Alzheimer's Association

• Area Agency on Aging

• DPHHS Senior and LTC Division

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Questions

[email protected]

f5 - a community and patien-centered approach to alzheimer ...€¦ · 54 million hours of unpaid...

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