Benefits of Adult Day Services for Caregivers: Effective, Sustainable and Affordable Steven H. Zarit, Ph.D. Penn State University LTSS Policy Summit October 1, 2014

Acknowledgements  Support for this research was provided by the following grants:  National Institute on Aging, grant RO1 AG031758, “Daily Stress, Health and Well- being of Family Caregivers  National Institute on Aging, grant RO 1 AG11354, “Stress Reduction for Caregivers of Persons with Dementia”  National Institute of Mental Health, grant RO1 MH59027, “Reducing Behavior Problems in Dementia: Day Care Use”

Benefits of Adult Day Services for Family Caregivers Overview  The challenges facing family caregivers  Respite as a strategy for lowering stress  Daily Stress and Health Study: Protecting the health and well-being of caregivers  Conclusions and questions

The Costs of Caregiving  Increased subjective stress  Increased emotional distress  Increased health problems  Increased mortality

Respite as a Strategy for Lowering Caregiving Stress  Respite provided by family  Paid respite  Adult Day Services  In-home respite  Overnight or short-term institutional respite

The Daily Stress and Health of Caregivers (DaSH) Study DAILY STRESSORS Caregivers are exposed to care-related stressors about 140 min./day ADS Use lowers daily stress exposure by 43% STRESS HORMONES: CORTISOL, DHEA-S Emotions (depression, anger, positive feelings) Health

How We Conducted the DaSH Study Day1 Day 2 Day3Day5Day7Day8 Day 2 DAY  Before getting out of bed  30 min after getting out of bed  Before lunch  Afternoon (~ time when relative returns from ADS)  Bedtime 5 saliva samples each day Phone interviews for 8 consecutive days Some of the days caregivers used ADS Some of the days they did not use ADS (non-ADS days) Measures: Daily stressors; daily affect

Participant Saliva Collection Kit

Cortisol as a Precursor of Illness  Short-term activation (i.e., cortisol elevation) is adaptive  Repeated or prolonged activation (e.g., caregiving) leads to dysregulation of cortisol  a. Cortisol overproduction  b. Blunted diurnal salivary cortisol rhythm  c. Cortisol dysregulation is associated with depression, problems with learning & memory, inadequate immune system activation; chronic health problems

DHEA-S as a Precursor of Illness DHEA-S is a hormone that protects the body from damaging effects of cortisol DHEA-S is a hormone that protects the body from damaging effects of cortisol More DHEA-S is better Chronic stress attenuates the DHEA-S response Chronic stress attenuates the DHEA-S response Positive benefits of DHEA-S Positive benefits of DHEA-S Increases positive emotions and decreases depression Increases positive emotions and decreases depression Lowers risk of cardiovascular disease Lowers risk of cardiovascular disease May protect against damage of brain neurons leading to May protect against damage of brain neurons leading to Alzheimer's disease Lowers risk of mortality Lowers risk of mortality

DHEA-S  Dehydroepiandrosterone-Sulfate

Caregivers’ CharacteristicsMean or %Range Age (in years) Relationship to Care Receiver Spouse Daughter/ daughter-in-law Other 39% 56% 5% Gender (women)89% Race (white)73% Employed41% Duration of care Less than 1 year 1 to 5 years More than 5 years 10% 57% 33% Age of Care Receiver (in years) Gender of Care Receivers (women)61%

The Daily Stress and Health of Caregivers (DaSH) Study DAILY STRESSORS Caregivers are exposed to care-related stressors about 140 min./day ADS Use lowers daily stress exposure by 43% STRESS HORMONES: CORTISOL, DHEA-S Emotions (depression, anger, positive feelings) Health

Normal diurnal cortisol pattern Average Cortisol (nmol/L)

Cortisol on ADS and non-ADS days: Low morning rise

Cortisol on ADS and non-ADS days: Medium low morning rise

Effects of ADS Use on DHEA-S  No same day effects of ADS  Lagged effects: DHEA-S was higher on days following ADS use  Levels of DHEA-S covaried significantly with positive emotion

EXAMPLE: PARTICIPANT 1134 Daily DHEA-S and Positive Affect

The Daily Stress and Health of Caregivers (DaSH) Study DAILY STRESSORS Caregivers are exposed to care-related stressors about 140 min./day ADS Use lowers daily stress exposure by 43% STRESS HORMONES: CORTISOL, DHEA-S Emotions (depression, anger, positive feelings) Health

Implications of DASH  Each day of adult day care use results in improved levels of key stress hormones for carergivers  These improvements reduce the risk of illness for caregivers  Improvements in emotional responses also have implications for long-term health  Caregivers who used more ADS days at the initial study period had better functional health

The Potential Role of ADS and Other Forms of Respite in Lowering Burden  Sustainable help  Affordable  Effective

Limitations of Adult Day Service Programs  Limited ability to serve small towns and rural areas  Unwillingness of the person with dementia to attend  Reluctance of caregivers to use respite services  Not covered by Medicare

Investigative Team Steven Zarit David Almeida Elia Femia Laura Klein Mary Jon Barrineau Amanda Leggett Yin Lieu Allison Reamy Peter Molenaar Michael Rovine Kyungmin Kim Courtney Whetzel

Summary and Questions  ADS use relieves caregivers’ exposure to stressors  ADS use improves caregivers’ levels of stress hormones, which reduces risk of illness  ADS use leads to improved emotional well-being of caregivers For more information or copies of DaSH publications, contact  Dr. Steven Zarit 