WE CAN DO BETTER: Helping People with Dementia and Their Families Live at Home with Quality of Life

Transcription

1 WE CAN DO BETTER: Helping People with Dementia and Their Families Live at Home with Quality of Life Laura N. Gitlin, Ph.D. Professor, School of Nursing, School of Medicine Director, Center for Innovative Care in Aging Johns Hopkins University Prepared for the Benjamin Rose Conference November 13, 2014

2 Overview Unmet needs of people with dementia and family caregivers living at home Promising interventions Project COPE Tailored Activity Program Where do we go from here?

3 Funding Sources Research funded by: NIA NIMH NINR Alzheimer s Association PA Dept. of Health, Tobacco Funds Administration on Aging No disclosures/no sources of conflict

4 Case Snapshot Mr. Smith cares for his wife at home. She was diagnosed with dementia 4 years ago. He learned of the Alzheimer s Association from a neighbor (by chance) and received some helpful information from national and local chapters. Mr. Smith stopped working to care for his wife. He is becoming increasingly isolated and depressed. He is having difficulty managing Mrs. Smith s increasing physical dependence and behavioral symptoms including her pacing, repetitive questioning, trying to leave home, misplacing keys, rejecting his help. He is not sure how to engage her and is concerned about her quality of life. Mr. Smith does not receive any in-home help, and Mrs. Smith s physician has put her on anticholinesterase medications that do not appear to be effective. HOW CAN WE HELP MR. AND MRS SMITH? WHAT INTERVENTIONS/TREATMENTS ARE EFFECTIVE? WHAT WOULD YOU RECOMMEND?

5 Unmet Needs of Persons with Dementia Living at Home (N=303) Black et al., JAGS 2013 Eval/Diagnosis Treat cognitive sx Treat neuropsych sx Behavior management Medication management Medication administration General Medical/Health care Allied Health care Safety ADL Assistance Meaningful Activities Legal Issues/ Care Planning Health Insurance Patient Education Caregiver Availability 14% 16% 21% 19% 23% 18% 25% 9% 21% 3% 35% 47% 51% 63% 90% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

6 Caregivers unmet needs (%) Caregiver education 84 Resource referral 88 Caregiver mental health 45 Caregiver medical health 24 Other

7 Overall Framework Individual with Dementia Behaviors Daily function Underlying medical conditions Poor sleep Pain Dehydration Fear Disengagement Risk of falls Fear, loss of control, meaning Caregiver Quality of life Physical Environment Communication (yelling, harsh, negative tone, blaming) Expectations too high Stress level Health Rushes, no predictable routines and meaningful activities Clutter Noisy Visual cues Complexity Under/over stimulating Adapted from Cohen-Mansfield, 2001

8 Project COPE Care of Persons with Dementia in their Environments

9 Intervention Nurse visit (up to 2): Provide caregiver education Take blood/urine of person with dementia OT visits (up to 10) Assess function of person with dementia Train families in range of strategies to enhance daily function

10 Nurse Visit to Discuss Medical Issues Provide caregiver education about: Pain Dehydration Infection Constipation Polypharmacy

11 Examine Individual with Dementia Nurse tests sample with Chemstrip 10 test strip: Positive outcomes cultured at lab Nurse screens for blood abnormalities Hgb, Hct., wbc, rbc, electrolytes, glucose, TSH and T4 Physical exam Laboratory results shared with caregiver

12 Occupational Therapist Visits: Assessment of capabilities and deficit areas of person with dementia Identify and target areas most problematic to family using basic problem solving approach: Identify daily care routines Identify antecedents/triggers and consider consequences Brainstorm strategies Implement and evaluate strategy effectiveness Provide caregivers with skills in: Communicating effectively Simplifying environment Using activities Managing their own stress and taking care of self

13 Key Communication Strategies for Families Use 1 or 2 step simple verbal commands or demonstration Speak slowly Use brief, simple statements Eliminate questions/ comments that are abstract (vs. questions) Offer no more than 2 choices Use cueing (touch or verbal)

14 Redirection, Go with Flow, Reassurance Behavior: My wife sometimes insists on going home when sitting in our living room. Strategy: Go along with your family member s beliefs (avoid confrontation and do not rationalize); provide reassurance, redirect; they may not recognize they are home; take a short walk

15 Verbal Cues Behavior: My husband keeps asking me the what day it is and what we will read in bible study. Strategy: Provide 1- step verbal cue to check the calendar

16 Use Written Visual Cues Behavior: My sister doesn t seem to know what to do in the morning. Strategy: Provide visual prompts - reminder notes

17 Nothing to Do

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19 Introduce Familiar Activity Behavior: Because my wife can t do anything right, I do it myself. Strategy: Lower expectations and demands; relax the rules Introduce activities that tap into previous roles

20 Prevalence of Undiagnosed Medical Undiagnosed illnesses in 40 (37.4%) patients: 3 patients (2.8%) >2 coexisting, undiagnosed medical illnesses 15% Bacteriuria 9% Anemia 5% Hyperglycemia Of 40 patients, 39 (97.5%) followed-up with physicians, 1 refused. Of 39, 1 patient was hospitalized with others treated as outpatients.

21 Comparison of COPE (n=102) and Control (n=107) Group Patients 4-months Baseline 4-Month Follow-up Control COPE Control COPE Patient Outcomes M (SD) M (SD) M (SD) M (SD) Difference of Adjusted Means 95% CI p d Overall functional dependence 2.8 (1.3) 3.0 (1.2) 3.3 (1.3) 3.7 (1.3).24.03, IADL dependence 1.8 (1.0) 1.8 (1.0) 2.5 (1.1) 2.8 (1.2).32.09, Activity engagement 2.0 (0.4) 1.9 (0.4) 1.9 (0.5) 2.0 (0.4).12.07, Quality of life 2.1 (0.5) 2.1 (0.4) 2.1 (0.5) 2.2 (0.5) ,

22 Percent Eliminating Targeted Care Challenge 70.00% 60.00% 62.7% p= % 44.9% 40.00% 30.00% COPE Control 20.00% 10.00% 0.00% Percent Eliminating Care Challenges

23 Perceived Change Scale Perceived change overall p= Control Intervention T1 Time T2

24 Confidence Scale Caregiver confidence p= Control Intervention Time

25 Percent 80 Perceived Patient Benefits at 9 Months 70 COPE Control p = p < Improved patient's life Helped you keep patient at home Response = "A great deal"

26 Tailored Activity Program Funded by NIMH #R21 MH069425;NIA Gitlin et al., 2008, 2010, American Journal of Geriatric Psychiatry; Gitlin, et al., 2010 The Gerontologist; Jutkowitz, et al., 2010 Value in Health

27 TAP STUDY DESIGN Recruitment Screening Baseline Assessment (T1) Randomization N = 60 MMSE <24 CG reports boredom, agitation, behavioral problem CG providing care > 4 hrs daily Willing to learn activities Treatment Intervention Control 4 Months Post Baseline (T2) 8 moths Post Baseline (T3) Follow-up Assessment Follow-up Assessment Intervention Follow-up

28 Intervention Characteristics 8 home/telephone sessions over 4-months by occupational therapists Phase I - Assessment: Capabilities of dementia patient using neuropsychological and structured standardized observation tools (Allen Battery) Previous roles, habits and interests Caregiver management style Physical environment Phase II Implementation Develop and introduce customized activities (Activity Prescription) Train caregivers to: Set up activity; simplify environment Communicate effectively (cueing, initiation, sequencing) Phase III Generalizability Integration of activities in daily care Use of strategies for other care challenges

29 Activity Selection Person with Dementia Environment Caregiver Interests and prior Social Roles Clinical Assessment: Cognitive Allen MMSE Physical TUG ADL/IADL Sensory Comportment Safety Accessibility Noise Other People Readiness Stress Communication Routines Care goals Activity Prescriptions

30 Play Ball: activity selection Mr. L Hollers, boredom, asking same? over and over Baseball Deacon Puppies Clinical Assessment: Allen: 3.4 MMSE: 6 TUG: 2 min 31 sec ADL/IADL: moderately to completely dependent Home Busy Household Lots of people Lots of noise Great-great-grandson also has medical issues 3 Activity Prescriptions: Game of Catch Listen to Gospel Music Watch DVD of Puppies Daughter Readiness: Preparation Demanding job Cares for multiple people Communication: pos/neg

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32 Play Ball

33 Mutual Help: activity selection Ms. H Behaviors: restless, sundowning, asking? over and over Pastor Mother of 9 Helping Clinical Assessment: Allen: 3.2 MMSE: 2 TUG: 30 sec ADL/IADL: minimal to moderate dependence Home Safe Not Cluttered Quiet Daughter Readiness: Action, already trying activities Willing to listen Willing to commit time and energy Want QoL for mom 3 Activity Prescriptions: Folding Laundry Unload Dishwasher Listen to Gospel Music

34 Mutual Help: Folding the Laundry

35 Lessons Learned Initially B wanted Mom to learn new things Gear activity to where Mom is today B was raised to do household tasks properly There is no right or wrong It is stressful Stress reduction techniques used daily

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39 Outcomes

40 Individuals with Dementia (N=60) Mean age = % male 77% White; 23% African American 54% < H.S. education Mean MMSE = 11.6 (range ) Medications: 78.3% on cholinesterase inhibitor or memantine 32% taking psychotropic medication for behavioral symptoms 45% on antidepressants Average of 7.6 behavioral symptoms

41 Caregiver Sample (N = 60) Mean age = 65.4 Most females (11.7% males) 77% White 27.2% <High school education Most spouses (62%)

42 4 Month Patient Outcomes (N=60) Outcomes Decline in frequency of behavioral symptoms Adjusted Mean p value Cohen s d Shadowing Repetitive question Enhanced activity engagement Enhanced pleasure

43 % Reporting Improvement and Worsening of Behavioral Symptoms (4 months-baseline) 80% 70% P= % 50% 40% 30% TAP Control 20% 10% 0% Improvement Worsening

44 % Reporting Patient Agitation (N=60) Baseline 4 months TAP Control Grp P=.014; Cohen s d=.75

45 Cognitive Status and 4-month Outcomes No difference in outcomes for patients with MMSE < 10 and MMSE>10 on frequency of behavioral symptoms E.g., patients with hi or low cognitive status had reduced frequency of occurrence of behavioral symptoms compared to controls Patients with MMSE>10 in TAP also had fewer number of behavioral symptoms than patients with MMSE < 10 compared to controls

46 Mean Number of Hours Mean Number of Hours 9 Hours Caregiver Doing Things for Dementia Patient 19 Hours on Duty Control Experimental p = p =.001 Control Experimental 4 Baseline Assessment Timepoint Four Months 10 Baseline Assessment Timepoint Four Months

47 Mean Level of Mastery Mastery Control Experimental p = Baseline Assessment Timepoint Four Months

48 Mean Level of Confidence Confidence Using Activities p =.011 Control Experimental 5 Baseline Assessment Timepoint Four Months

49 Mr. K 83 years of age Admitted to gero-psychiatric unit in acute care hospital for agitation, anxiety, and apathy Lives at home with wife (primary caregiver) Mini-mental status examination = 16 (moderate stage dementia) Previous employment chemist

50 Mr. K s Cognitive Functioning (Manual Action Level) Can handle objects, repetitive actions Eye-hand coordination Understands concrete meaning of objects Repetitive actions may not notice effect of action on object Can distinguish size, shape and color Lines objects in a row Uses short phrases

51 Mr. K

52 Mr. F 70 years of age Admitted for agitation, aggression, anxiety, delusions, hallucinations Lives at home with wife (primary caregiver) Mini-mental status examination = 15 (moderate stage dementia) Previous employment FBI agent Interests barbershop music, being outside, socializing, golf (in past) Comportment 16 (low orientation to others and socialability)

53 Mr. F s cognitive functioning ACLS 5 = 3.0 (Manual Action Level) Not able to preform self-care activities Understands concrete meaning of objects Repetitive actions may not notice effect of action on object Can distinguish size, shape and color Activities Listen and sing with barbershop music Indoor golf Dancing to music Watching golf DVD

54 Mr. F

55 Tailored Activity Program Discovery Phase III RCTs Translation Alzheimer Association Lakeside Medical University VA- TAP Australia TAP Baltimore TAP Kentucky TAP Adult Day Scotland OT Home Project Home

56 Take Home Points We can support quality of life of families living with dementia at home Focus should be on dyad Caregiver as therapeutic agent and target of intervention Effective strategies include: Caregiver education and skills training Modifying the home environment Providing activities tailored to interests and abilities

57 ENVISIONING A BETTER WAY If these interventions were drugs, it is hard to believe that they would not be on the fast track to approval. The magnitude of benefit and quality of evidence supporting these interventions considerably exceed those of currently approved pharmacologic therapies [for dementia]. Kenneth E. Covinsky, MD, MPH, Editorial, Annals of Internal Medicine, 2006.

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