Managing Mid toLate Stage Dementia

Terri McCarthy with ActonAlz resourcesMMDA

October 20141

Objectives

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1. Identify clinical characteristics that identify patients with mid-late stage dementia

2. Know the critical tasks recommended for patients with mid-late stage dementia

3. Understand the importance of using dementia as the organizing principle of care for patients with dementia

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ACT on Alzheimer’s

statewide

collaborative

volunteer driven

60+O R G A N I Z A T I O N S

300+I N D I V I D U A L S

I M P A C T S O F A L Z H E I M E R ’ S

BUDGETARY SOCIAL PERSONAL

sustain caregivers

raise awareness & reduce stigma

Goals of ACT

identify & invest in promising approaches

increase detection & improve care

equip communities

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ACT Tool Kit

• Consensus-based, best practice standards for Alzheimer’s care

• Tools and resources for:– Primary care providers– Care coordinators– Community agencies– Patients and families

www.actonalz.org

Clinical Provider Practice Tool

• Easy button workflow for:1. Screening2. Dementia work-up3. Treatment / care

www.actonalz.org/provider-practice-tools

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Managing Mid toLate Stage Dementia

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Stages of Alzheimer’s Disease

Managing Dementia Across the Continuum

10www.actonalz.org/provider-practice-tools

Organizing principle of care

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Critical task:Optimize function and quality of life

• Identify preserved capabilities and preferred activities

• Refer to OT/PT to maximize independence

• Appropriately treat conditions the can lead to poor outcome

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Critical task:Manage chronic disease

• Re-evaluate treatment goals over time – assess impact of multiple comorbidities

• Create an ACTION plan for potentially unstable conditions to prevent hospitalization

• Regular MD/NP visits with partner present

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Critical task:Promote positive behavioral health

• For acute changes in behavioral expressions

– RULE OUT DELIRIUM!

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What is delirium?

• Acute disturbance of consciousness• Impaired attention• Disorganized thinking• Perceptual disturbances• Fluctuating course• Psychomotor changes• Sleep disturbance

• Evidence that there is an underlying physiologic or medical condition causing the disorder

CAM – Confusion Assessment Method

• 1. Acute onset• 2. Inattention• 3. Disorganized thinking• 4. Altered level of consciousness

• Possible delirium requires (1 and 2) + (3 or 4)

BPSD Behavioral and psychological symptoms of dementia

• 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

Ferri, CP et al. Lancet 2005

Jeste, DV. ,Neuropsychopharmacology. 2008 17

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Figure 1

Basic principles of promoting positive behavioral health• Define and categorize target behavior

• COMMUNICATION = UNMET NEED

• Identify fixable causes

• Treat only those that affect QOL of patient

• Non-pharmacologic interventions 20

Identify Fixable Causes

• 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

Define behavior and target symptoms

• Examples– Attention seeking behaviors

• Verbal outbursts

– Aggression during cares– Hitting, pushing, kicking– Sexual disinhibition– Restless motor activity, pacing, rocking– Calling out– Wandering

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Define behavior and target symptoms

• Psychosis– Delusions– Hallucinations

• Mood symptoms– Anxiety– Dysphoria– Irritability– Lability

• Aggression• Spontaneous disinhibition

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Target behavior/symptoms

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Table 2

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• 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

Gitlin, et al. JAMA, 2012

Non-pharmacologicinterventions

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Evaluate and document!!

• Document interventions• Monitor efficacy of interventions

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Pharmacologic interventions

“Consider pharmacologic interventions only when non-pharmacologic interventions consistently fail and the person is in danger of doing harm to self or others, or when intolerable psychiatric suffering is evident”

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Pharmacological Treatment

• Antipsychotics• Antidepressants• Mood stabilizers• Cognitive enhancers

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Bottom Line

• “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:

– Perform EKG– Falls, orthostatic BP, EPS, tardive dyskinesia, glucose – Regularly attempt to wean/discontinue

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Critical task: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)

Screening tool to alert doctors to the right (i.e. indicated, but not prescribed) treatment for older people (START).

Barry P J et al. Age Ageing 2007;36:632-638

Copyright © The Author 2007. Published by Oxford University Press on behalf of the British Geriatrics Society.

Critical task:Assess safety and driving• Sensory aides• Fall risk assessment• Safe driving

– Objective assessment– Rescind license with DMV if necessary

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Safety: Driving Resource Center

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Alzheimer’s Association Driving Center: www.alz.org/care/alzheimers-dementia-and-driving.asp

Critical task:Advance Care Planning

• Discussion of goals of care, values• Identification AND engagement of HCPOA

– Honoring Choices– 5 wishes

• Introduce concept of palliative care, educate about hospice

• Document in EMR, healthcare directive• Provider Orders for Life Sustaining Treatment

(POLST)37

Critical task: Assess care partner needs

• Providing support for dementia caregivers is a societal imperative– 70% of individuals with Alzheimer’s disease live at

home – In 2012, an estimated 15 million unpaid caregivers

provided an estimated 17.5 billion hours of unpaid care

– The health care system could not sustain the cost of care without unpaid caregivers

Dementia Caregivers

• Typically adult children, spouses or other relatives

• Most are women with some college education• Provide average 20hrs / week of unpaid care • More time dedicated to care and heavier

involvement with ADLs and IADLs than non-dementia caregivers

• Face greater emotional and psychological challenges

Caregiver Support

• There is a strong correlation between the health and well-being of a caregiver and the quality of care that they can provide

• Such a correlation calls for assuring the availability of caregiver supports

• A caregiver with a positive outlook provides better care for a longer period of time

Assess care partner needs

• Education on behavioral expressions• Education on delirium• Education on stages of dementia –

anticipatory guidance• Objective assessment of caregiver burden

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Stages of Alzheimer’s Disease

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BURDEN INTERVIEW

INSTRUCTIONS:The following is a list of statements which reflect how people sometimes feel when taking care of another person. After each statement, indicate how often you feel that way: never, rarely, sometimes, quite frequently, or nearly always. There are no right or wrong answers.

1. Do you feel that your relative asks for more help than he or she needs?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

2. Do you feel that, because of the time you spend with your relative, you don't have enough time for yourself?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

3. Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

4. Do you feel embarrassed about your relative's behavior?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

5. Do you feel angry when you are around your relative?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

6. Do you feel that your relative currently affects your relationship with other family members? 0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

7. Are you afraid about what the future holds for your relative?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

8. Do you feel that your relative is dependent upon you?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

9. Do you feel strained when you are around your relative?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

10. Do you feel that your health has suffered because of your involvement with your relative?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

11. Do you feel that you don't have as much privacy as you would like, because of your relative? 0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE

FREQUENTLY 4 NEARLY ALWAYS

12. Do you feel that your social life has suffered because you are caring for your relative?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

13. Do you feel uncomfortable having your friends over because of your relative?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

14. Do you feel that your relative seems to expect you to take care of him or her, as if you were the only one he or she could depend on?0 NEVER 1 RARELY 2 SOMETIMES 3 QUITE FREQUENTLY 4 NEARLY ALWAYS

Critical task:Report suspected abuse• Mandated to report suspected maltreatment

of a vulnerable adult

– Minnesota Department of Human Services Adult Protective Services

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Critical task:Services and supports

• Senior LinkAge line• www.MinnesotaHelp.info• Alzheimers Association Minnesota-North

Dakota

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And finally,….