Caregiving: Health Effects, Treatments, and Future Directions Richard Schulz, PhD Distinguished Service Professor of Psychiatry and Director, University Center for Social and Urban Research University of Pittsburgh Cleveland, Ohio November 2015 Research supported by the National Institute of Mental Health, National Institute on Aging, National Institute of Nursing Research, and National Heart, Lung and Blood Institute
Overview of Presentation 1. Care Trajectory and Health Effects 2. Intervention Strategies 3. The Future of Caregiving
1. Care Trajectory: Tasks Care Trajectory Sporadic Care Initiate IADL Care Expand to ADL Care Placement CG Tasks Accompany to physician appt. Light errands Check-in / monitor Communicate with health providers Monitor symptoms/ meds Manage finances and household tasks Hire care providers Coordinate care Provide emotional support Monitor behavior and location Provide Personal care + + + Deal with insurance issues Provide acute care/manage symptoms Advance care planning Advocacy Personal care CG = caregiver; IADL = instrumental activities of daily living (e.g., cooking, cleaning, shopping); ADL = activities of daily living (e.g., bathing, dressing, toileting).
Caregiver Depression 7.5 7 Before Caregiving After Caregiving 6.5 6 5.5 5 4.5 4 Moderate Caregiver Heavy Caregiver Source: Burton et al. (2003). Gerontologist, 43:230-241.
Poor Self-Care 0.8 0.7 0.6 0.5 0.4 0.3 0.2 0.1 Before After 0 Moderate Caregiver Heavy Caregiver Source: Burton et al. (2003). Gerontologist, 43:230-241.
Relative Risk Adjusted Relative Risk of Mortality: Significant Predictors 3.5 3.3 3 2.5 2 1.5 1 1.1 1.88 2 1.63 0.5 0 Age Sex Race Prevalent Disease Caregiving Strain Source: Schulz et al. (1999). JAMA, 282:2215-2219.
Care Trajectory: Health Effects Care Trajectory Sporadic Care Initiate IADL Care Expand to ADL Care Placement Death CG Tasks Accompaniment to physician appt. Light errands Check-in/monitor Communicate with health providers Monitor symptoms/ meds Manage finances and household tasks Hire care providers Coordinate care Provide emotional support Monitor behavior and location Personal care Deal with insurance issues Provide acute care/ manage symptoms Advance care planning Advocacy Personal care Emotional Support Health Effects on CG Potential Interventions Anxiety Burden Anxiety Burden Mild distress Psychiatric/ physical morbidity Mortality
Caregiving and Health: Summary Becoming a heavy duty caregiver is associated with: Increased depression Poorer health Poor self-care Losing weight Increased chronic illness Over time, heavy duty caregivers decline more rapidly than non-caregivers Caregiving is a risk factor for mortality
Care Trajectory: Health Effects Care Trajectory Sporadic Care Initiate IADL Care Expand to ADL Care Placement Death CG Tasks Accompaniment to physician appt. Light errands Check-in/monitor Communicate with health providers Monitor symptoms/ meds Manage finances and household tasks Hire care providers Coordinate care Provide emotional support Monitor behavior and location Personal care Deal with insurance issues Provide acute care/ manage symptoms Advance care planning Advocacy Personal care Emotional Support Health Effects on CG Anxiety Burden Anxiety Burden Mild distress Psychiatric/ physical morbidity Mortality Continued burden Distress Psychiatric morbidity Relief/ recovery Complicated grief
2. CAREGIVER INTERVENTION STRATEGIES
Identifying Caregivers at Risk: Classes of Risk Factors Sociodemographic Characteristics Lower income (<$30k) Lower education (high school or less) 50 or older Spouse Female Live with care recipient Intensity/Type of Care >100 hours per month High personal/mobility care needs Dementia Care (problem behaviors) Feet/Teeth care Medical care shots/injections, wound care Manage medical tasks appointments, speak to provider, health insurance
Identifying Caregivers at Risk: Classes of Risk Factors Sociodemographic Characteristics Lower income (<$30k) Lower education (high school or less) 50 or older Spouse Female Live with care recipient Intensity/Type of Care >100 hours per month High personal/mobility care needs Dementia Care (problem behaviors) Feet/Teeth care Medical care shots/injections, wound care Manage medical tasks appointments, speak to provider, health insurance
Identifying Caregivers at Risk: Classes of Risk Factors Health and Physical Functioning of CG Poor/fair Self Rated Health 3+ medical conditions Sleep problems Difficulty breathing Pain Limited leg/arm strength Unwanted weight loss Social and Professional Support No one to help with CR; no one to talk to No time to socialize No access or use of professional support services Home Physical Environment Appropriate home modifications lacking Stairs, Clutter
Identifying Caregivers at Risk: At Risk for What? Financial Difficulty Emotional Difficulty Physical Difficulty Burden/Stress Mental Health Anxiety, Depression Physical Health Physical exhaustion Impaired Self-care Worsening Medical Conditions Conflict with Work Neglect/Abuse Institutionalization Correlated, but risk profiles vary by outcome
Connecting Risk Factors to Outcomes Risk Factors Sociodemographic Characteristics Intensity/Type of Care CG Health and Physical Functioning Social and Professional Support Home Physical Environment Outcomes Financial Difficulty Emotional Difficulty Physical Difficulty Burden/Stress Mental Health Anxiety, Depression Physical Health Physical Exhaustion Impaired Self-care Worsening Medical Conditions Conflict with Work Neglect/Abuse Institutionalization
Developing Intervention Strategies Goals Risk Appraisal Intervention Dosing Outcomes Assessment
Risk Appraisal and Intervention REACH Trial Intervention designed to address 6 areas: Burden Problem behaviors: Social support/social integration Self-care/physical health Emotional well-being Safety (Pt driving, access to weapons)
Risk Areas, Treatments and Outcomes Caregiver Risk Area Safety (driving, access to weapons, medications, household obstacles) Intervention Options Home assessments and alterations, patient monitoring devices, removing access Outcomes Reduction or elimination of targeted risk area Source: Schulz et al. (2004). Am J Geriatr Psychiatry, 12:240-249.
Risk Areas, Treatments and Outcomes Caregiver Risk Area CG Self-care and preventive health behaviors (e.g., sleep quality, diet, exercise, vaccinations, health screening) Intervention Options Health passport, education, monitoring, facilitating access Outcomes Improved self-care, health behaviors, better health Source: Schulz et al. (2004). Am J Geriatr Psychiatry, 12:240-249.
Risk Areas, Treatments and Outcomes Caregiver Risk Area Support of caregiver (e.g., informational, instrumental, and emotional support) Intervention Options Information and referral sources, telephone support groups Outcomes Enhanced knowledge about caregiving, disease, and aging; increased satisfaction with support; fewer negative interactions Source: Schulz et al. (2004). Am J Geriatr Psychiatry, 12:240-249.
Risk Areas, Treatments and Outcomes Caregiver Risk Area Depression, distress Intervention Options Relaxation/pleasant events training Outcomes Reduced symptomatology, absence of clinical depression Source: Schulz et al. (2004). Am J Geriatr Psychiatry, 12:240-249.
Editorial on REACH II Results (Annals of Internal Medicine) If these interventions were drugs, it is hard to believe that they would not be on the fast track to approval. Covinsky, KE, Johnston, CB, Editorial. (2006). Ann Int Med, 145;770-771.
Extending REACH REACH VA adaptation for veterans living at home Adopted in numerous states as part of Area Agencies on Aging (Aging Services programs) Replicated in Hong Kong, Germany, adapted for mainland China Adopted by Indian Health Service
Videocare Adaptation of REACH Menu driven Bi-modal output: Text Speech User s preferred language Help feature Help card l Czaja et al., AJGP, 2013; 21(11), 1071-1081.
Caregiver Interventions: Summary Intervention strategies have been moderately successful Most successful interventions are multi-component, adapted to individual needs Higher doses achieve larger effects Many approaches, modalities, measurement strategies available Technologies have great potential for delivery of interventions
3. THE FUTURE OF CAREGIVING: THE PERFECT STORM Increased number of older individuals Fewer children available to provide care Increased longevity with extended periods of disability Higher disability rates due to obesity epidemic More women in workforce More fractured, geographically dispersed families Inadequate healthcare workforce with geriatric expertise Highly constrained formal health care environment
Who Will Fill The Gap? Currently 26% of direct care workers are foreign born Will likely grow over next decade May have impact on ongoing debate over immigration policy Technology: deliver services more cheaply via IT and robotic technologies
Politics and Prevention More political clout and therefore services for seniors? Growing resentment on part of younger generations? Increasing chronic care cost controls through incentives and regulations Greater societal emphasis on healthy aging, brain health decreased rates of dementia due to better health?
Changing Attitudes Toward Death Greater acceptance of death and end-of-life care planning; (e.g., Medicare covers end-of-life care discussions) Earlier and more aggressive palliative care More care not necessarily better Big push for comfort care, not cure Growing acceptance of Aid in Dying
Better Integration of Caregiver in Health and LTC Services Family Centered Care: Dyad/family as unit of care recognized, supported, and integrated into formal care Treatment observers/extenders, lay team members, decision makers EMA portals that include both patient and Caregiver Expanded family caregiver supports (respite, training, payment for family caregivers);greater regulation, standardization & scrutiny of funded services More large scale cost-benefit studies of caregiver support interventions
More and Better Technology Increased use of technology to support caregiving Enhanced communication, virtual support Smart monitoring Adaptive coaching/prompting systems Better care coordination through WWW and EMA Wearable technology for monitoring and coaching Migration of human based CG interventions to technology platforms Workplace supports for caregiving will evolve and increase Volunteer caregiver workforce? Certified to provide evidence-based caregiver programs
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