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Managing Mid to Late Stage Dementia Terri McCarthy with ActonAlz resources MMDA October 2014 1.

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Presentation on theme: "Managing Mid to Late Stage Dementia Terri McCarthy with ActonAlz resources MMDA October 2014 1."— Presentation transcript:

1 Managing Mid to Late Stage Dementia Terri McCarthy with ActonAlz resources MMDA October

2 Objectives 2 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

3 ACT on Alzheimer’s statewide collaborative volunteer driven 60+ ORGANIZATIONS 300+ INDIVIDUALS IMPACTS OF ALZHEIMER’S BUDGETARYSOCIAL PERSONAL 3

4 sustain caregivers raise awareness & reduce stigma Goals of ACT identify & invest in promising approaches increase detection & improve care equip communities

5 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 5

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7 Clinical Provider Practice Tool Easy button workflow for: 1.Screening 2.Dementia work-up 3.Treatment / care 7

8 Managing Mid to Late Stage Dementia 8

9 Stages of Alzheimer’s Disease

10 Managing Dementia Across the Continuum 10

11 Organizing principle of care 11

12 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 12

13 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 13

14 Critical task: Promote positive behavioral health For acute changes in behavioral expressions – RULE OUT DELIRIUM! 14

15 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

16 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)

17 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

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19 19 Figure 1

20 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

21 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

22 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 22

23 Define behavior and target symptoms Psychosis – Delusions – Hallucinations Mood symptoms – Anxiety – Dysphoria – Irritability – Lability Aggression Spontaneous disinhibition 23

24 Target behavior/symptoms 24

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26 Table 2 26

27 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-pharmacologic interventions 27

28 Evaluate and document!! Document interventions Monitor efficacy of interventions 28

29 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” 29

30 Pharmacological Treatment Antipsychotics Antidepressants Mood stabilizers Cognitive enhancers 30

31 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 31

32 Critical task: Optimizing Medication Therapy 32 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)

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

34 Critical task: Assess safety and driving Sensory aides Fall risk assessment Safe driving – Objective assessment – Rescind license with DMV if necessary 34

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36 Safety: Driving Resource Center 36 Alzheimer’s Association Driving Center:

37 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

38 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

39 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

40 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

41 Assess care partner needs Education on behavioral expressions Education on delirium Education on stages of dementia – anticipatory guidance Objective assessment of caregiver burden 41

42 Stages of Alzheimer’s Disease

43 1 BURDEN INTERVIEW I NSTRUCTIONS : 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 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS 2. Do you feel that, because of the time you spend with your relative, you don't have enough time for yourself? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS 3. Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS 4. Do you feel embarrassed about your relative's behavior? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS 5. Do you feel angry when you are around your relative? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS 6. Do you feel that your relative currently affects your relationship with other family members? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS 7. Are you afraid about what the future holds for your relative? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS 8. Do you feel that your relative is dependent upon you? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS 9. Do you feel strained when you are around your relative? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS Do you feel that your health has suffered because of your involvement with your relative? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS Do you feel that you don't have as much privacy as you would like, because of your relative? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS 12. Do you feel that your social life has suffered because you are caring for your relative? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS Do you feel uncomfortable having your friends over because of your relative? 0 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS 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 N EVER 1 R ARELY 2 S OMETIMES 3 Q UITE F REQUENTLY 4 N EARLY A LWAYS

44 Critical task: Report suspected abuse Mandated to report suspected maltreatment of a vulnerable adult – Minnesota Department of Human Services Adult Protective Services 44

45 Critical task: Services and supports Senior LinkAge line Alzheimers Association Minnesota-North Dakota 45

46 And finally,….


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