Therapeutic Benefits of Caregiver Interventions

Transcription

1 Therapeutic Benefits of Caregiver Interventions Laura N. Gitlin, Ph.D. Professor, Department Community Public Health, School of Nursing Director, Center for Innovative Care in Aging Johns Hopkins University February 2, 2013 University of Hong Kong

2 Overview Why care about caregivers? What do families do and need? Therapeutic benefits of caregiver interventions Implications for practice

3 Funding Sources Research funded by: National Institutes of Health Alzheimer s Association PA Dept. of Health, Tobacco Funds Rosalynn Carter Caregiver Institute/Johnson & Johnson Institute Administration on Aging Veterans Administration No disclosures/no sources of conflict

4 Why Care about Caregivers? Most persons with dementia live at home and are cared for by families throughout the duration of the disease Families responsible for monitoring symptoms, evaluating capacity, coordinating medical care and supportive services for persons with dementia Families at risk themselves for depression, poor health, dementia, mortality Financial and physical strain experienced by caregivers associated with nursing home placement Impact of caregivers on persons with dementia is substantial: Dysfunctional coping associated with higher mortality Closeness and quality relationship associated with better outcomes Being stressed or burdened associated with greater behavioral symptoms

5 Clinical Trajectory and Impact on Families Normal Pre- Clinical Mild Cognitive Impairment Early State Dementia Moderate Stage Dementia Severe Stage Dementia Care tasks: Coordination, planning ahead, Accompaniment to physician visits, Medication management, IADL assistance Care tasks: IADL and ADL assistance, Behavioral management Vigilance, Safety, Medical management Care tasks: IADL, ADL assistance, Behavioral management, Medical management Impact on Carers: Anxiety Burden Impact on Carers: Increased anxiety, fatigue, Depression, burden, loss of work, Complicated grief 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

6 Unmet Needs of Persons with Dementia Living at Home (N=303) (Samus et al., Gerontological Meetings, 2012 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%

7 Caregiver Unmet Needs (n=289) Samus et al., Gerontological Meetings, 2012 Caregiver education 84 % Resource referral 88 % Caregiver mental health 45 % Caregiver medical health 24 % Other 6 %

8 Impact of Unmet Needs >Unmet needs associated with >depressive scores (p=0.002) and lower self-rated (p<0.001) quality of life for patients >Unmet needs associated with >caregiver depression (p<0.001) and lower caregiver QOL (p<0.001) Samus et al., 2011 Gerontological Society of America presentation

9 Therapeutic Benefits of Caregiver Interventions

10 Hypothetical Model of Caregiver as Therapeutic Agent Well-being Caregiver Outcomes Patient Outcomes -Disease etiology -Disease Stage -Physical Health -Cognitive Abilities -Cognitive Deficits -Care setting Caregiver interventions -Mood -Quality of life -Efficacy -Skills -Coping/burden -Physical health -Mood -Behaviors -Quality of life -Function -Social engagement -Physical health -Support network Care relationship Education Counseling Family counseling Depression treatment Skills training

11 Strong Evidence from Large RCTs Counseling/on-going support for white spouse caregivers (N=406) (Mittelman et al., Int Psychogeriatr 2000, 2004 etc) Reduced spousal caregiver upset Over time, decline in patient institutionalization rate No effect on behavioral frequency/severity Behavioral management, education, support for Hispanic, African American and White Caregivers (N=642) (NIA/NINR REACH II multi-site study Belle et al., Annals of Internal Medicine, 2006) Improved caregiver well-being (Whites, Hispanics, Spouse African Americans) Reduced upset with behavioral symptoms Perceived improvement in behaviors

12 8 Recent Systematic Reviews of Nonpharmacologic Caregiver Intervention Studies ( ) Effect sizes are small but caregiver benefits include: Lower perceived burden Lower depression Higher sense of competence Improved coping skills Effect for persons with dementia not always considered Effect sizes for caregivers vary by gender, care relationship Few studies report cost or cost effectiveness Modest benefit of information-based services for neuropsychiatric symptoms and quality of life in people with dementia but no effects on caregiver burden Few interventions culturally tailored to Hispanic/Latino caregivers from differing subcultures Interventions with a dual focus (patient/caregiver) may improve some but not all aspects of functioning for both parties Gitlin & Hodgson in press, Caregivers as Therapeutic Agents in Evidence Based Dementia Practice

13 Meta-analysis of Generalized All-purpose Caregiver Interventions to Improve Behaviors 23 randomized clinical trials of caregiver support interventions 3,279 community-dwelling caregivers and their family members with dementia Outcomes: Person with Dementia - Significant treatment effects for reduction of behavioral symptoms effect size = 0.34 (95% CI: , Z = 4.87; p<0.01) Caregiver negative reactions reduced: effect size = 0.15 (95% CI: , Z = 2.76; p=0.006) Brodaty et al., Sept American Journal of Psychiatry; Gitlin, Editorial, Sept AJP

14 Select Outcomes from Recent RCTs

15 Environmental Skill-building Program (Skills2CareTM) (NIH REACH I N = 255) Person-environment fit framework 6 to 8 home sessions by occupational therapist Identification of caregiver concerns (3 to 5 concerns) Problem solving with caregiver Environmental and task simplification Use of visual cues Decluttering Set up daily routines Simplify tasks Stress reduction Education about disease and communication strategies Gitlin, et al., (2003).The Gerontologist

16 Benefits to Persons with Dementia Reduced functional dependence Enhanced engagement Enhanced quality of life Gitlin, et al., (2005). Maintenance of effects of the home environmental skill- building program for family caregivers and individuals with Alzheimer s disease and related disorders. Journal of Gerontology: Medical Sciences, 60A(3), ; Gitlin, et al., (2001). A randomized, controlled trial of a home environmental intervention: Effect on efficacy and upset in caregivers and on daily function of persons with dementia. The Gerontologist, 41, 4-14.

17 5 Number of Memory-Related Behaviors N=127 Treatment Group p=.019 b CI =.99, a CI = -.92, -.09 Control group 4 Baseline 6 Months 12 Months Gitlin et al., 2005, J. of Gerontology, Medical Sciences

18 Benefits to Family Caregivers Enhanced: Skills to use effective communications Skills using simplification strategies Confidence managing day-to-day Well-being (particularly for spouses and women) Reduced: Upset with behaviors Burden and depression Time spent on duty (for male caregivers) Gitlin, et al. (2003). Effects of the Home Environmental Skill-building Program on the Caregiver- Care Recipient Dyad: Six-month Outcomes from the Philadelphia REACH Initiative. The Gerontologist, 43(4), ; Gitlin, et al., (2001). A randomized, controlled trial of a home environmental intervention: Effect on efficacy and upset in caregivers and on daily function of persons with dementia. The Gerontologist, 41, 4-14.

19 Caregiver Upset with Behavioral Symptoms (N = 255) (p=.027) Usual Care Experimental 4.4 Baseline Six Months RMBPC items: repetitive questions, forgetting day/recent events, difficulty concentrating, not finishing tasks, losing things

20 Funded by NIA/NINR Gitlin et al., 2007 Clinical Interventions in Aging Gitlin et al., 2010 Journal of the American Geriatrics Society

21 Model for Understanding Behavioral Symptoms Caregiver Communication (yelling, harsh, negative tone, blaming) Expectations too high Stress level Poor Health Rushes, no predictable routines Poor relationship Ineffective coping style Individual with Dementia Behavioral symptoms Underlying medical conditions Executive dysfunctions Poor sleep Pain Dehydration Disengagement Risk of falls Fear, loss of control, meaning Physical Environment Clutter Noisy Visual cues Complexity Under/over stimulating Activities too complex

22 PROJECT ACT STUDY DESIGN (N=272) 2 weeks 72 hours Recruitment Screening Baseline Assessment (N = 272) Randomization gender/relationship 2 weeks 4 Months Post Baseline 6 Months Post Baseline Treatment (N=137) Follow-up Assessment 1 Follow-up Assessment 2 Control (N=135) Follow-up Assessment 1 Follow-up Assessment 2 Workshop

23 ACT Sample (N = 272) Caregivers Average age = % White; 30% African American 82% Female 51% Spouse 67% > HS education Average of 4 years caregiving Persons with Dementia Average age = 82 53% male MMSE = 13 Average of 10 behavioral symptoms

24 Nurse Medical Assessment and Caregiver Education Review patient s medical issues Provide caregiver education about: Pain Dehydration Infection Constipation Polypharmacy Work with caregiver how to take care of themselves

25 Collect blood and urine specimens from patient Perform physical exam of patient Conduct telephone follow up with caregiver to discuss test results If medical problem, refer caregiver to physician Follow-up (one week later) with caregiver to determine if physician appointment obtained and resolution (action taken by physician) Medical Assessment

26 9 Visits by Occupational Therapist: Problem Solving Process Identify the behavior Identify antecedents or triggers Consider consequences Brainstorm strategies Implement strategies Evaluate strategy effectiveness

27 Providing Caregivers Skills ACTION PLAN Simplify: 1. Environment 2. Tasks 3. Activities 4. Communications Customized Action Plan utilizing four types of strategies Basic education about dementia Methods for stress reduction

28 Project ACT (N=272) Effect on Family Caregivers at 4 Months Emotional Well-being: Improved Mood (p =.001) Decreased depressive symptoms (p=.045) Decreased upset with behaviors (p =.001) Decreased subjective burden (p =.044) Caregiver Skills: Confidence managing behaviors (p =.007) Decline in negative communications (p =.009) Improved management skills (p =.001) Gitlin, et al., (2010). Targeting and managing behavioral symptoms in individuals with dementia: A randomized trial of a nonpharmacological intervention. Journal of the American Geriatrics Society. 58 (6)

29 Reduction in Targeted Behavior of Person with Dementia p= ACT Control Group 10 0 Got Worse Stayed same Got better

30 Undiagnosed Medical Conditions Undiagnosed acute illnesses occurred in 44 (35%) of 124 individuals with dementia Most prevalent conditions: Bacteriuria (20%) Hyperglycemia (7%) Anemia (5%) Of 44 persons with detected medical issue: 40 (91%) caregivers followed up with physician Of 40, 3 physicians did not treat because patients had asymptomatic bateriuria Gitlin et al., in press, JAGS; Hodgson, Gitlin et al., in press, Alz. Disease and Related Disorders

31 Implications for Practice

32 Characteristics of Effective Caregiver Interventions Education and support alone are not effective Effects of multi-component interventions, counseling, respite etc are domain specific: Interventions effectively improve some aspects of caregiver wellbeing or some aspects of well-being of the person with dementia that are being targeted but not everything Multi-component interventions more effective vs. singular Psychosocial support critical element Tailoring to family caregiver needs, care preferences, values Address multiple needs Interventions requiring active caregiver participation have broadest effects Zarit and Femia, AJN, 2008, vol 109

33 Clinical Trajectory and Impact on Families Normal Pre- Clinical Mild Cognitive Impairment Early State Dementia Moderate Stage Dementia Severe Stage Dementia Care tasks: Coordination, planning ahead, Accompaniment to physician visits, Medication management, IADL assistance Care tasks: IADL and ADL assistance, Behavioral management Vigilance, Safety and medical monitoring Care tasks: IADL, ADL assistance, Behavioral management, Medical management Anxiety Burden Increased anxiety, fatigue, Depression, burden, loss of work, Complicated grief Comprehensive care for families across disease stage that addresses changing needs of caregiver and persons with dementia and involve on-going needs assessment, multi-components, and tailoring. 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

34 Challenges for Involving Caregivers as Therapeutic Agent Paradigm shift from focus only on person with dementia to family unit and coordination across disease trajectory Integrate assessment of caregiver needs within clinical settings Financial support for health professional involvement with caregiver education, skills training and support Cost and cost effectiveness lacking We have strong evidence-based caregiver interventions but more research needed to: Match diverse families with best intervention approaches Identify effective interventions for each disease stage Determine how to implement evidence from RCTs into practice settings

35 Recommendations from WHO 2012 Report Countries should develop integrated and coordinated health and social pathways and services to cater for the changing needs of people with dementia and their caregivers Greater community support, including respite options, will assist families to care for people with dementia for longer in community and will delay or reduce reliance on high-cost residential care. In resource-poor settings, a focus on community outreach could be an efficient use of scarce resources to improve the quality of life of people with dementia and their caregivers.