LINDA HERRLY, LCSW PHOENIX VA HEALTHCARE SYSTEM

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1 LINDA HERRLY, LCSW CAREGIVER SUPPORT COORDINATOR PHOENIX VA HEALTHCARE SYSTEM

2 Who are Caregivers? Family Member Significant Other Friend Neighbor Acquaintance

3 Caregivers Statistics Approximately 23 million Veterans live in the U.S. 300 million U.S. civilians (12.1% have a disability) About 3 million Veterans have a disability

4 Caregiver Statistics An estimated 65.7 million caregivers provide unpaid care to a care recipient Caregivers who have been providing care for five or more years are nearly twice as likely as short term caregivers to report a decline in their health (24% long term versus 14% short term) term) 31% of caregivers consider their caregiving situation to be highly emotionally stressful 53% of caregivers say that caregiving takes away time from friends and other family members

5 Caregiver Activities Provide transportation Prepare meals Complete household chores Make decisions on behalf of the Veteran Help with medication management Provide support and companionship Assist with finances

6 Caregiving in the U.S. Keeping recipient safe at home Managing emotional/physical stress Providing activities Finding time for yourself Balancing work/family responsibilities Talking to providers Choosing home care agency Mki Making end of life decisions i Choosing assisted living facilities Managing challenging behaviors Choosing nursing homes Moving/lifting recipient Managing incontinence Finding non English language materials National Alliance for Caregiving and AARP. (2009). Caregiving in the U.S.

7 Help Wanted Untrained family member or friend to act as an advocate, researcher, care manager, and emotional support for a parent or spouse, sibling or friend, who has been diagnosed with a serious illness or has a chronic disability. Duties: Make medical decisions, negotiate with insurance companies or Medicare; pay bills; legal work; personal care and entertainment in hospital and rehab. Aftercare at home: Substitute for skilled nurse if injections, IV, oxygen, wound care or tube feedings are required. Long term care: Medication management, showering, toileting, lifting, transporting, etc. Hours: on demand. Salary and [employee] benefits: 0. Sheehy, G. (2010) Passages in Caregiving

8 The Value of Caregiving Family caregivers have been and will likely continue to be the largest source of long term care services in the United States National Alliance for Caregiving and Evercare Survey indicate that the value of the services family caregivers provide for free when caring for older adults is estimated at $375 billion dollars US Health and Human Services (2003) Office of the Secretary for Planning and Evaluation National Alliance for Caregiving and AARP (2009). Caregiving in the U.S.

9 CAREGIVERS The average care recipients age is 69.3 years The majority of caregivers are women Caregivers spend about 20.4 hours per week providing care National Alliance for Caregiving and AARP (2009). Caregiving in the U.S. US

10 Veterans Veterans are still predominantly men (92%) 11% are Black (non Hispanic) 1% are American Indian (non Hispanic) 1% are Asian (non Hispanic) 1% are Pacific Islander (non Hispanic) 79% are White (non Hispanic) i 1% are other multiple races (non Hispanic) Ages are: 20% 17 44; 40% 45 64; 4; 34% 65 84; 6% 85+ Veterans generally have a higher number of co morbid conditions Veterans have a higher rate of mental health disorders and substance abuse

11 ROLES AND RESPONSIBILITIES OF THE CAREGIVER Caregivers have been called the hidden patients. At increased risk of stress and decline in health, research has pointed to a connection between caregiving and accelerated risk of mortality.

12 ACTIVITIES OF DAILY LIVING (ADL) Help with walking (the use of gait belts after appropriate training ) Assistance with transferring, such as from chair to bed (appropriate techniques to help the caregiver and Veteran limit the chance of injury) Help with dressing and personal hygiene tasks (assistive devices) Feeding meals (training on dysphasia, swallowing and diet should be offered) Giving medications (caregiver understanding the importance of medication timeliness and missed medication)

13 INSTRUMENTAL ACTIVITIES OF DAILY LIVING (IADL) Transportation Grocery shopping and other errands Cooking and/or arranging for meals Assisting with paying bills and other financial issues Medication management Housekeeping and maintenance Help with laundry Coordinating agency services Checking medical equipment Providing emotional support Going to doctor appointments

14 METHODS OF CAREGIVER SUPPORT Provide access to resources Provide emotional and social support Help support well being and physical health Educate regarding VA support systems Encourage seeking community support

15 Coping Strategies for Caregivers 73% pray 61% talk to friends and relatives 44% read about caregiving in books or other materials 41% exercise or work out 33% turn to the Internet to find information 27% talk to a professional or spiritual counselor 12% take medication Caregiving in the U.S. (2009)

16 REWARDS OF CAREGIVING Personal and spiritual growth Making a difference as a caregiver Learning self care and wellness strategies Learning personal strengths and weaknesses Feeling appreciated and helpful Developing peer support resources Experiencing a greater appreciation for life Gaining new skills Giving back to a loved one Improved relationships with family and friends Finding joy in small pleasures Being reacquainted with distant family members

17 How Can Caregivers Find Life Balance Call Cll regular family meetings to determine caregiver roles and responsibilities Find peer support through local groups or online Prioritize daily activities, plan, prepare, manage time and realize that no one can do it all Seek help outside the family, such as friends, neighbors, volunteers, or obtaining additional support services through a pay for service agency Set priorities for caregiving duties and self care needs Talk to employers about the availability of flexible work schedules Use available community and VA resources Mk i f l iii Make time for personal activities and interests Take time to relax and rejuvenate

18 VA Supportive Resources Adult Day Health Care (ADHC) Home Based Primary Care (HBPC) Purchased Skilled Home Care/Homemaker/HHA Respite Care Care Coordination/Home Telehealth Home Hospice Care VA Community Living Centers (CLC) Contract Nursing Home (CNH) Program State Veterans Home (SVH) Program

19 Community Resources Alzheimer s Association American Cancer Society American Parkinson s s Disease Association Brain Injury Association of America Center for Healthcare Rights/Health Insurance Counseling Advocacy Program Lifeline, Medical Alert System Medic Alert/Safe Return Program National Association i for Continence National Multiple Sclerosis Society National Stroke Association Area Agency on Aging

20 The VA Caregiver Support Program

21 Key Assumptions VA relies on family caregivers to prevent institutionalization of Veterans Family caregiving has significant challenges Supporting caregivers helps Veterans Caregivers are individuals with needs Caregiver sensitivity and awareness is important in all programs Integrating ti family caregivers into treatment t t teams is part of Veteran Centered Care 21

22 Eligibility For New Caregiver Services Post 9 11 only Veteran Eligibility ibili Criteria: Ci i Veteran who suffered a serious injury incurred or aggravated in the line of duty on or after 9/11/01 including traumatic brain injury and psychological trauma or other mental disorder and Is in need of personal care services because of an inability to perform one or more activities of daily living; a need for supervision or protection based on symptoms or residuals of neurological or other impairment or injury; or such other mattersasthe as the Secretary considers appropriate General Caregiver benefits include all era Veterans 22

23 All General Caregivers Receive: All ERAs In person education p Interactive Web site Telehealth training Teaching techniques, strategies, and skills for caring Counseling and other services under 1782 Respite care age and medically appropriate including in home under 1720B Respite care, age and medically appropriate, including in home under 1720B Information on all available VA/community services Family Caregivers Additionally Receive: Post 9 11 Only Appropriate instruction and training Travel, lodging, and per diem for training Lodging and subsistence for appointments Respite care during training R i d i i i Ongoing technical support Counseling Primary Family Caregivers P i F il C i Additionally Additi ll Receive: Post 9 11 Only Monthly caregiver stipend Appropriate mental health services pp p Health care coverage 23

24 CAREGIVER SERVICES Currently Provide* General Caregiver Services Education and training Counseling Support Groups Lodging if Veteran present Respite Care Home Based Primary Care Telehealth Non Institutional Care Caregiver Healthy Living Center MyHealtheVet Caregiver information on VA Health Web site New Benefits Post 9/11 Primary Caregiver Caregiver stipend Formalized training program Validation of competencies Ongoing monitoring i Health care coverage Mental health services Travel, lodging, subsistence and respite for training and for hospital stays Additional Family Caregivers Formalized training Travel, lodging, subsistence and respite for training and hospital stays 24

25 VA Caregiver Support Line VA Caregiver Support Line Open M F 8 a.m. 11 p.m. EST, Sat. 10:30 a.m. 6 p.m. EST The Support Line can: Tll Tell you about the assistance it available from VA. Help you access services and benefits. Connect you with your local family Caregiver Support Coordinator at a VA medical center near you. Just listen, if that's what you need right now

26 VA Caregiver Website

27 Questions? Thank you for allowing me to present here today on caregiver support. Linda Herrly, Caregiver Support Coordinator, Phoenix VA Healthcare System x7777

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