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 lgitlin1@jhu.edu Prepared for University of Sydney March 23, 2015
Overview What are unmet needs of people with dementia and family caregivers living at home? How can we address these needs? Promising interventions Project COPE Tailored Activity Program Where do we go from here?
Funding Sources and Attributions Research funded by: NIA NIMH NINR Alzheimer s Association PA Dept. of Health, Tobacco Funds Administration on Aging No disclosures/no sources of conflict Thanks to my many collaborators and teams working with me in developing, testing and implementing behavioral interventions
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?
Six Primary Goals of Dementia Care Improve and maintain quality of life Prevent, reduce/minimize, address behavioral symptoms Maintain function and engagement in activities Attend to medical management of comorbidities Support families Care coordination Callahan et al., Health Affairs, 2014; Sink, et al JAMA. 2005; Avalon et al., Arch Intern Med. 2006; Hinton et al., J. Gen Intern Med, 2007; Lingler et al., J Am Geriatr Soc. 2005.
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%
Caregivers unmet needs (%) Caregiver education 84 Resource referral 88 Caregiver mental health 45 Caregiver medical health 24 Other 6 0 10 20 30 40 50 60 70 80 90 100
NPS fluctuate after Dementia Onset N=328 Cache County Study Number and severity of NPS increased over time but course was variable and episodic. Rate of change in NPS was correlated weakly, if at all, with rate of change in cognition or function. Tschanz et al, Am J Geriatr Psychiatry, 2012
NPS accelerate onset of severe dementia including mild NPS Rabins et al, 2013, Alzheimer s and Dementia
Etiologies of Behavioral Symptoms and Functional Decline Behavioral Symptoms Functional disability
Project COPE Care of Persons with Dementia in their Environments Gitlin et al, 2010 JAMA
Clinical Trajectory COPE Dyadic Focus Normal Pre- Clinical Mild Cognitive Impairment Early State Dementia Moderate Stage Dementia Severe Stage Dementia TREATMENT GOALS Treatment and Symptom Management Reduction of excess disability Prevention and management of behaviors Caregiver support and education McKhann et al., 2011, Albert et al., 2011, Sperling et al, 2011 and Jack et al., May 2011 Alzheimer's & Dementia: The Journal of the Alzheimer's Association
PROJECT COPE Study Desig8n (N=208) 2 weeks 72 hours Recruitment Screening Baseline Assessment (N = 272) Treatment Randomization gender/relationship 2 weeks Attention Control 4 Months Post Baseline 9 Months Post Baseline Follow-up Assessment 1 Follow-up Assessment 2 Follow-up Assessment 1 Follow-up Assessment 2
Profile of COPE Participants (N=239) Persons with dementia Mean = 82.4 (8.9) Female = 68.4% 27.3% African American Mean MMSE = 13.4 Medications: 95 (40.1%) on anti-depressants 77 (32.5%) on medications for behaviors 108 (45.6%) on pain medications 173 (73.3%) on memory enhancers Average # of behaviors = 6.0 High functional dependence Caregiver Mean age =62.2 Female = 89% Non-spouse = 62.2%
Nurse Visit to Discuss Medical Issues Provide caregiver education about: Pain Dehydration Infection Constipation Polypharmacy Discuss taking Care of self
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
Occupational Therapist Visits: Assessment Phase (session 1-3) PwD capabilities, deficits, physical function executive function CG readiness, knowledge, care challenges, risk areas Home safety and supportive features Implementation Phase (session 4-8) Identification of targeted problem areas Problem solving and brainstorming strategies Implement and evaluate strategy effectiveness Knowledge building and strategies: Communicating effectively Simplifying environment Using activities Managing their own stress and taking care of self Generalizabiltiy Phase (session 9-10) Preparing for the future Using strategies for other care challenges
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)
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
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
Use Written Visual Cues Behavior: My sister doesn t seem to know what to do in the morning. Strategy: Provide visual prompts - reminder notes
Simplifing the Environment e.g., Decluttering
Nothing to Do
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
KEY FINDINGS
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.
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,.44.02.21 IADL dependence 1.8 (1.0) 1.8 (1.0) 2.5 (1.1) 2.8 (1.2).32.09,.55.01.43 Activity engagement 2.0 (0.4) 1.9 (0.4) 1.9 (0.5) 2.0 (0.4).12.07,.22.03.26 Quality of life 2.1 (0.5) 2.1 (0.4) 2.1 (0.5) 2.2 (0.5).10 -.00,.20.06.14
Percent Eliminating Targeted Care Challenge 70.00% 60.00% 62.7% p=.010 50.00% 44.9% 40.00% 30.00% COPE Control 20.00% 10.00% 0.00% Percent Eliminating Care Challenges
Perceived Change Scale Perceived change overall 3.1 3 p=.002 2.9 2.8 2.7 2.6 Control Intervention 2.5 2.4 T1 Time T2
Confidence Scale Caregiver confidence 7.8 7.6 p=.002 7.4 7.2 Control Intervention 7 6.8 6.6 6.4 6.2 1 2 Time
Percent 80 Perceived Patient Benefits at 9 Months 70 COPE Control p =.023 60 50 40 p <.0001 30 20 10 0 Improved patient's life Helped you keep patient at home Response = "A great deal"
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
Clinical Trajectory Tailored Activity Program Normal Pre- Clinical Mild Cognitive Impairment Early State Dementia Moderate Stage Dementia Severe Stage Dementia TREATMENT GOALS Enhanced engagement Prevention and management of behaviors Caregiver support and education Reduction of objective burden (less time in care)
Tailored Activity Program Phase III Translation VA- TAP England TAP Australia TAP Baltimore TAP TAP-Hospital (Hopkins, Baltimore) Kentucky TAP AoA Scotland OT Home Project MIND Plus CMMI Brazil TAP Home Adult Day John Hopkins Memory Clinic and Pace Program
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) Follow-up Assessment Follow-up Assessment Intervention 8 moths Post Baseline (T3) Follow-up
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
Activity Selection Person with Dementia Environment Caregiver Interests and prior Social Roles Clinical Assessment: Cognitive funciton: Allen -Executive function Physical TUG ADL/IADL Sensory Comportment Safety Accessibility Noise Other People Readiness Stress Communication Routines Care goals Activity Prescriptions
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 Environment 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: positive/negative
Play Ball
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 Environment 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
Mutual Help: Folding the Laundry
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
TAILORED ACTIVITY PROGRAM HOSPITAL SETTINGS
Activity Station: Clerical Activity Station: Workbench Activity Station: Kitchen & Laundry
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
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
Mr. K
Mr. T
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)
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
Mr. F
Key Outcomes for Home-based Program
Individuals with Dementia (N=60) Mean age = 79.4 57% male 77% White; 23% African American 54% < H.S. education Mean MMSE = 11.6 (range 0.0-27) Medications: 78.3% on cholinesterase inhibitor or memantine 32% taking psychotropic medication for behavioral symptoms 45% on antidepressants Average of 7.6 behavioral symptoms
Caregiver Sample (N = 60) Mean age = 65.4 Most females (11.7% males) 77% White 27.2% <High school education Most spouses (62%)
4 Month Patient Outcomes (N=60) Outcomes Decline in frequency of behavioral symptoms Adjusted Mean p value Cohen s d -.32.009.72 Shadowing 1.00.003 3.10 Repetitive question -.49.023 1.11 Enhanced activity engagement.22.029.69 Enhanced pleasure.38.045.64
% Reporting Improvement and Worsening of Behavioral Symptoms (4 months-baseline) 80% 70% P=.004 60% 50% 40% 30% TAP Control 20% 10% 0% Improvement Worsening
% Reporting Patient Agitation (N=60) 45 40 35 30 25 20 15 10 5 0 Baseline 4 months TAP Control Grp P=.014; Cohen s d=.75
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
Mean Number of Hours Mean Number of Hours 9 Hours Caregiver Doing Things for Dementia Patient 19 Hours on Duty 18 8 17 7 6 Control Experimental 16 15 14 13 5 p =.001 12 11 p =.001 Control Experimental 4 Baseline Assessment Timepoint Four Months 10 Baseline Assessment Timepoint Four Months
Mean Level of Mastery Mastery 3.8 3.6 3.4 Control Experimental p =.013 3.2 Baseline Assessment Timepoint Four Months
Mean Level of Confidence Confidence Using Activities 7.6 7.4 7.2 7 6.8 6.6 6.4 6.2 6 5.8 5.6 5.4 5.2 p =.011 Control Experimental 5 Baseline Assessment Timepoint Four Months
Challenges Mechanisms of action How does engagement effect behavior/function/cognition Dose-response Replication, translation, implementation Who can implement these interventions? Who will pay for these interventions? Translation of knowledge into clinical tools Web-based programs for behavioral management Training of health and human service professionals
Translation into Practice Clinical Tools WeCare Advisor Tool for Families and health professionals to learn how to select and use non-pharmacologic strategies to address behavioral symptoms
http://www.amazon.com/caregivers- Guide-Dementia-Activities- Strategies/dp/1933822902