Supporting Family Caregivers in Diverse. the Right Questions and Providing Viable Solutions. Alliance for Aging, I nc.

Transcription

1 Supporting Family Caregivers in Diverse Alliance for Aging, Inc. Communities: Area Agency Asking on Aging for Miami Dade & Monroe Counties the Right Questions and Providing Viable Solutions Marsha Jenakovich, MAA, Alliance for Aging Iveris Martinez, Ph.D., Florida International University

2 Introduction The Hispanic population in Florida has grown five-fold since 1980, with a nearly 60% growth in the last decade Florida currently has 4.2 million Hispanics, with over 351,000 Hispanics age 60+ in Miami-Dade County Older Latinos are one of the fastest growing demographic groups in the country, estimated to represent 20% of all older adults or 17.5 million by 2050 Alliance There is for evidence Aging, of I nc. higher rates of cognitive disability reported M iami Dade among & M onroe Latinos, Counties potentially requiring more intensive caregiving over longer periods of time

3 Why Family Caregivers Family caregivers play a vital role in aging in place Racial/ethnic minorities may have different preferences concerning caregiving Living arrangements and family context Services and supports AAAs and providers often need more specific information on their local populations caregiving preferences Alliance Patient-centered, for Aging, individualized I nc. care is best; don t make assumptions M iami Dade & M onroe based Counties on stereotypes about race or ethnicity

4 Objectives Suggest some areas to explore to better understand the needs and preferences of local caregivers, such as: Multi-generational households where individuals may be both cared for and caregivers, responsible for caring for children or grandchildren Decision-making that often involves more people than the client and the caregiver other family members may have significant influence Stigma and stereotypes about receiving certain kinds of inhome services, e.g., training, support, housekeeping

5 Methods 2008 Evercare Study of Hispanic Family Caregiving in the U.S. Local demographic data Incoming calls to the Aging & Disability Resource Center Local service data in CIRTS Caregiver Survey Alliance Hospital for Transitions Aging, I nc. Program Local Area research Agency on on Aging caregivers for

6 Alliance for Aging, Inc. Miami Dade & Monroe Counties Findings

7 Study of Hispanic Family Caregiving 2008 Evercare Study of Hispanic Family Caregiving in the U.S. Hispanic caregivers, on average, are females in their 40s caring for a female relative (average age 62) Average 1.83 caregivers in the household Six in ten (63%) are in high burden situations More hours per week (37 hours) More intensive assistance (2.6 ADLs) Alliance 50% report for Aging, little or Ino nc. stress vs 28% highly stressful 1 Min iami Dade 4 would & Mfind onroe it Counties very difficult to find someone to take over caregiving responsibilities

8 Local Demographic Data Over 354,000 Hispanics over age 65 Two-thirds (67.3%) of the local elder population One-quarter (24.2%) live below 125% poverty guideline Complex household configurations: 1. Households headed by older adults (i.e., living in their home with children) 51% non-hispanics/39% Hispanics* 2. Households that include older adults (i.e., living with their children or grandchildren in their home) Hispanics 43%/non-Hispanics 32%* 3. Older adults with a co-habiting with non-family caregiver Nationally, one-third of Hispanic households report having at least M iami Dade one family & M onroe member Counties acting as a caregiver for someone over the age of 18 (i.e., disabled and/or older adults)* *2008 Evercare Study of Hispanic Family Caregiving in the U.S.

9 Area Agency on Aging Data Incoming calls to the ADRC Total calls in 2014: 75,000+ Caregiver-related contacts: 10,996 (15% of all calls), resulted in 13,403 referrals Caregiver specialist: 2,300+ intensive calls OAA Service data: 436 caregivers served, including 26 grandparents raising grandchildren Services: Respite: high demand, limited funding M iami Dade Support: & 2 Mcaregiver onroe Counties groups in the community Training: low demand, underutilized service

10 Caregiver Survey Small sample (98) from a local caregiver conference Results: Percent Need Special Notes 20-30% Respite, housekeeping/chores, transportation, housing 25-35% Information on specific caregiving skills 11-41% Information on specific medical conditions Coping with caregiver stress: 50% yes 21% Incontinence supplies 42% Dementiarelated anger 41% Dementia 38% Diabetes 31-34% Independent living, assisted living, long-term care 18% Nursing Home

11 Hospital Transitions Program Great outcomes for participants, but difficulties enrolling participants (80% acceptance at bedside, dropped to 60% at first home visit) Challenges/barriers: Patient agreed, caregiver/family member did not Defensive/resistant/didn t feel services were needed Reluctant to have strangers in the home In-home services provided to prevent re-hospitalization: Least Preferred Most Preferred Desired, Not Offered Housekeeping, chores Pharmacy, mobile doctor, home-delivered meals Respite, transportation

12 Challenges Limited data on local caregivers to help us understand this very large, complex population Demand for caregiver services far exceeds funding, particularly for those in poverty (over 146,000 in Miami-Dade) Limited funding for an array of in-home services may be prioritized for elders living alone without a caregiver Personal and cultural beliefs about caregiving affect Alliance decisions, for preferences, Aging, I nc. and outcomes Privacy M iami Dade and & Mpersonal onroe Counties space issues may influence the decision to accept services

13 Discussion The language we use especially our professional lingo can be a barrier: Research: Burden or Choice Services: Training and Support How you ask is important: Information on (specific skill or topic) versus caregiver training Information on coping with caregiver stress, anxiety, guilt, anger, resentment, worry, other emotional responses to caregiving How they Area Agency want on to Aging receive for help/information is key versus support group (aka stigmatized mental health services ) Our survey: mail (34%), (29%), website (23%) preferred, while we are funding hotlines, support groups, in-home training

14 Next Steps Internal study: improve coding for caregiver calls to help improve estimates of need/unmet need Caregiver survey: seek opportunities to more broadly administer the survey, particularly among racial and ethnic minority populations External funding: qualitative research to explore the caregiving experience, capture more of the complexity Alliance Collaboration: for Aging, work I nc. with local partners to enhance the safety net for caregivers

15 Alliance for Aging, Inc. Miami Dade & Monroe Counties Alliance For more for information, Aging, I nc. call: ELDER HELP