1. W HAT S TARTS H ERE C HANGES THE W ORLD Older Texans and Their Families: A Snapshot of Current Issues Presentation at Impact Austin Discovery Day January 5, 2013 Namkee G. Choi, PhD nchoi@austin.utexas.edu

2. W HAT S TARTS H ERE C HANGES THE W ORLD Texas Population in 2011 (25.7 million)

3. W HAT S TARTS H ERE C HANGES THE W ORLD Older Texans (60+ Years) Of 100 largest metro areas in the country, Austin has: 1. Fastest growing number of people aged 55-64 years; and 2. Second fastest growing number of people aged 65+.

4. W HAT S TARTS H ERE C HANGES THE W ORLD Demographics of Texans 60+ Years (American Community Survey, 2008)  44% Male; 56% female

5. W HAT S TARTS H ERE C HANGES THE W ORLD Demographics/Economic Status

6. W HAT S TARTS H ERE C HANGES THE W ORLD Income Sources  73% had no wage/salary income in the preceding 12 months  8% received Supplemental Security Income Limited English Proficiency (LEP)  9% not speaking English well or not at all  25% speaking another language at home

7. W HAT S TARTS H ERE C HANGES THE W ORLD Health Status of Texans 60+ Years (ACS, 2008)  12% self-care activity difficulty  12% cognitive difficulty  18% independent living difficulty  27% ambulatory difficulty  15% hearing difficulty  9% vision difficulty

8. W HAT S TARTS H ERE C HANGES THE W ORLD Informal Caregivers/Lovegivers in Texas (TX DADS & NFCA)  2.7 million (10.5% of all Texans)  $26 billion worth of care annually: Greater than total statewide Medicaid spending  39% for spouse; 57% for other family members  Typical caregiver/lovegiver: Age 45-64; female; married and employed (51%) with children  More than 1/3 provide 40+ hours of care a week.

9. W HAT S TARTS H ERE C HANGES THE W ORLD Informal Caregivers in Texas co nt.  17% of older Texans (age 60+) are family caregivers (for older adults and children).  Nationally, 78% of adults living in the community and in need of long-term care depend on family and friends as their only source of help.

10. W HAT S TARTS H ERE C HANGES THE W ORLD Caregiving: Rewarding but Stressful  The unprecedented amount of demands on the family: o More physical, functional, and cognitive comorbities with longer life span o Dementia life expectancy: 10-15+ years after the onset o Physical demands (ADLs/IADLs, lifting, turning, bedding changes) o Behavioral management issues in dementia caregiving o Role overload & emotional toll from social isolation, depression, guilt, loss & grief

11. W HAT S TARTS H ERE C HANGES THE W ORLD Family Support/Conflict  Caregivers with other family support do better.  Family help may come with a price: Argument over care provision, cost of care, and institutionalization and other decision-making  Caregiving can awaken/intensify family relationship issues : o The altruistic motivation to help can become enmeshed with unresolved feelings from the past. o Resentment toward care recipient o Reawakened sibling rivalries

12. W HAT S TARTS H ERE C HANGES THE W ORLD Formal Support  Formal (gov’t-paid, subsidized, or privately paid) services help.  Can be problematic: Frequent helper turnover, inadequate level of helper training, and high cost  15% of older TX caregivers pay someone else to help them care for their loved ones.  Placement of a loved one in a care facility does not end stress: o Guilt o Traveling to visit the loved one o Learning to interact with staff and monitoring care o Stress related to financial arrangement

13. W HAT S TARTS H ERE C HANGES THE W ORLD Stress Process Model of Caregiving (Pearlin et al., 1990)

14. W HAT S TARTS H ERE C HANGES THE W ORLD Psychosocial Interventions for Caregivers of People with Dementia  Psychoeducation programs (e.g., Antecedent-Behavior- Consequences [ABCs] in behavioral management)  Communication and skills training  Stress management  Asking for help from extended family and friends  Caregiver support groups  Counseling of caregiver depression, loss and grief

15. W HAT S TARTS H ERE C HANGES THE W ORLD Effectiveness of Caregiver Programs  Modest but significant benefits on the following outcomes: o Delayed nursing home entry o Caregiver stress/burden o Caregiver knowledge about dementia, caregiving, and resources and perceived social support o Caregiver & patient depression and other psychological morbidity

16. W HAT S TARTS H ERE C HANGES THE W ORLD The Most Important Intervention Element  Involvement of both caregiver and patient in a structured intervention (e.g., teaching the caregiver problem-solving skills applicable to the patient, pleasant event planning, & cognitive stimulation for patient)

17. W HAT S TARTS H ERE C HANGES THE W ORLD Community Support and Resources  National Family Caregiver Support Program (The Older American Act, Title IIIE)  Community Living Assistance and Support Services (CLASS; TX DADS)  Private-pay geriatric case management firms  Respite care: o Home health aides o Housekeeping services and benefits counseling (CapCOG-- Area Agencies on Aging - AAA) o Adult day services (AGE) o Meals on Wheels for both caregiver and the patient

18. W HAT S TARTS H ERE C HANGES THE W ORLD Community Support and Resources  SAVVY caregiver training (DVD)/support group (Alzheimer’s Association, AAA)  24-hour hotline, care consultation, and education programs (Alzheimer’s Association)  Powerful Tools for Caregiving: 6-week caregiver psychoeducation program (AGE CG Resource Center)  Matter of Balance Fall Prevention (AAA, AGE)  Medication Management Improvement (AAA)  HB 802 created the Lifespan Respite Services Program  SB 271 for informal caregiver assessment and support

19. W HAT S TARTS H ERE C HANGES THE W ORLD Stakeholder Recommendations (TX DADS)  Increasing public awareness of informal caregiving and resources  Organizing/coordinating more caregiver resources and programs  Identifying and resolving gaps in formal services  Involving stakeholder groups (employers, local community, medical professions) in addressing gaps in caregiver supports  Addressing the unique needs of ‘kinship’ caregivers raising grandchildren or other relatives under 18

20. W HAT S TARTS H ERE C HANGES THE W ORLD With Attention to…

21. W HAT S TARTS H ERE C HANGES THE W ORLD And Prevention Through Active Aging! “Lifestyle determines almost entirely how successfully we age.” (Rowe & Kahn, 1998).  Social and productive engagement / volunteering  Exercise body and mind (cognitive stimulation)  Healthy eating  Positive spirituality

22. W HAT S TARTS H ERE C HANGES THE W ORLD Questions?