Navigating the Rough Waters of Family Caregiving Presented By: Donna Benton, Ph.D.
Types of Caregivers Family caregiver Provides care for family member who needs assistance, can be primary or secondary caregiver. Informal caregiver Friends or neighbors who provide care full time or part time, and can live with the person being cared for or live separately.
Who is a Caregiver? Definition: Anyone who cares for and gives unpaid support to a family member, friend, or neighbor who is frail, ill, or disabled and who lives at home or in a care facility.
Further Classifications of Caregivers Non – Working Caregivers Working Caregivers Long Distance Caregivers
Caregiver Statistics Family caregivers in the United States: Nearly one out of every four U.S. households is involved in care to persons aged 50 or over. 25.8 million family caregivers provide personal assistance to adults (aged 18+) with a disability or chronic illness. More than 7 million spouses, adult children, other relatives, and friends or neighbors provide unpaid help to disabled older adults living in the community. (Family Caregiver Alliance, 2003)
Who Are the Caregivers? 85% of all home care is provided by family members and friends. 71% of all long-term care is provided in the community. 14% of home care is rendered by paid providers. 72% of caregivers are female. (Family Caregiver Alliance, 2003)
Long Distance Caregiving Definition: Caregivers who travel a distance of one hour or more to care for older adult needing assistance. Nearly 7 million Americans are long-distance caregivers for older relatives. The average travel time for these caregivers to reach their relatives is 4 hours.
Strains of Caregivers 25% of care receivers need to be lifted, moved which often results in muscle strain/back pain. 16% of caregivers indicate that their health has worsened since becoming a caregiver. 46% are clinically depressed. 2 to 3 times more likely to use prescription drugs for anxiety, depression, insomnia. 80% of working caregivers report emotional strain.
Introduction to Community Care Options The challenges of caregiving can be overwhelming for the friends and family of someone with an illness. Caregivers are responsible for a variety of care needs (examples: physical, household chores, long-term care planning, and providing emotional support and other daily needs). There are resources in your community to help you with the care of your loved one.
Assessing Your Needs: Make a list of your needs and problems as they happen so you know what kind of help you need.
Assess Your Situation: What is the friend’s or family member’s level of functioning? What type of help does my loved one need to live as independently as possible? How much money is available to pay for outside resources? Will my insurance cover any of these services? What days and times do I need help? What assistance can I provide myself? What types of help are my friends and family members willing to provide? What specific types of help are still needed?
Contacting Community Resources: Start looking for information before your situation becomes overwhelming. Write down all the information you are given. Obtain the name of the agency, person you spoke with, date of your conversation, services requested, services promised and any agreed- upon information. When you call be prepared with information of the medical doctor’s name, diagnostic information, insurance coverage and Medicare, Medi-Cal, and Social Security Numbers (when relevant).
Contacting Community Resources (Continued): With agencies, be assertive and specific about your needs. Mornings are usually the best time to call. Do not hang up until you understand the follow- up procedures. Be aware that you might be placed on a wait list. Demand for services has increased while funding for many service programs has decreased. Don’t hesitate to ask for help.
Community Care Options Available: Informal Care family & friends who help with specific task, emotional support and activities Information & Referral (I & R) Helps identify what resources exist Case Management Services Provides assistance in locating/managing services for on-going needs Transportation Services Trips to and from medical appointments, day programs and other services
Community Care Options Available: Nutrition Programs Congregate meal programs & Meals-on-Wheels Programs Home Care Combines health care/supportive services to homebound people Respite Care Relief for family friends so they can take a break Umbrella term for adult day care, home care and facilities. Adult Day Care Community-Based Adult Services (CBAS) Adult Day Health Care Support Groups Brings together persons to meet, share information and talk about solutions to common problems
Further Care . . . . . Many caregivers continue providing care beyond their physical and emotional capacity before considering long-term placement for their impaired relative. Yet moving to a residential facility may be the only way to relieve the caregiver.
Issues ma signa t need t considerfor. . . . y l he o Out-of-Home Care Options Caregiver provides Your relative wanders for around-the clock away from home. care (or supervision). Your relative cannot Caregivers health is complete their greatly affected. activities of daily Caregiver suffer from living (ADLs). exhaustion, stress, Your relative receives fear, isolation. no rehabilitation at home.
Types of Facilities Include: Assisted Living Facilities (ALFs) For individuals who are independent and desire privacy (Apartment- style living) Skilled Nursing Facilities (SNF) For individuals who require extensive care. Continued nursing services under an RN or LVN Retirement Communities Offer a range of living options from independent living to SNFs. Alzheimer’s Care Facilities/Units For individuals with Alzheimer’s Disease/Dementia. Emphasis on independent with secured grounds
Information & Referral (I & R) Help identify what resources exists. For example, the local Caregiver Resource Center, Area Agency on Aging (AAA), Senior Centers are a few organizations. Point of entry to housing, food, and adult day care programs.
Case Management Services Provide assistance in locating and managing services for ongoing needs. Case managers usually have a background in counseling, social work, or related health care field. Case managers may help determine eligibility for entitlement programs, plan for long-term care and intervene in crisis situations.
Respite Care Definition: Relief for family and friends so they can take a break from the demands of providing constant care. Respite care includes adult day care and home care services, as well as, overnight stays in a facility, and can be provided for a few hours a week or for a weekend.
Adult Day Care Offers participants time to socialize, enjoy peer support and receive health & social services. Provides a break for caregivers responsible for person. Services may include: care & supervision; group & individual activities; nutritious meals; transportation; case management; recreation & exercise; nursing care; education; counseling; assistance with activities of daily living; and therapy(OT, ST, PT).
Adult Day Care (Continued) Types of Adult Day Care:Adult Day Social Care: provides social activities, meals, recreation and some health-related services.Adult Day Health Care: offers more intensive health, therapeutic & social services for individuals with severe medical programs and those at risk of requiring nursing home care.
Support Groups Brings together persons to meet, share information and talk about solutions to common problems. Source of information on available resources. Opportunity to give and receive encouragement, understanding, and support from others who have similar concerns. Knowledge that person is not alone. Groups are held at hospitals and disease-specific support organizations.
Home Care Combines health care and supportive services to help homebound individuals or disabled persons. Hours, types or services and level of care vary due to the needs of the person. Aides can be located through personal referrals or at a private home health agency, hospital, public health department or other community organizations Costs is dependent on level of care needed.
Home Care (Continued) For homebound individuals in need of skilled nursing, a plan of treatment is prescribed by a medical doctor or other health care professional. Professional home care workers may include: nurses, social workers, speech pathologists, therapists (PT, OT, ST), and dieticians. These professionals can assist with medical care, personal care, and nutrition.
Home Care (Continued)For persons with dementia, intensive nursing care is not usually needed unless there are additional medical problems. A Homemaker, Chore Worker, or Home Health Aide to help for a few hours a day or week to assist.
Transportation Services Trips to and from medical appointments, day programs, and other services. Volunteer drivers, bus, taxi, or specially equipped van services. Generally requested in advance and on a regular schedule to go to weekly appointments. There is usually a fee for riding.
Nutrition Programs Congregate Meal Programs: Meals-on-Wheels Programs: Provide meals Provides homebound individuals who are usually lunch unable to shop for or prepare their in a group setting. own meals. Many churches, Various groups provides synagogues, housing this and it may be funded projects, senior centers, partially with community centers, and government money or by day programs offer charitable groups. meals. Delivered on weekdays. Minimal fee for services. Nominal fee for services.
LACRC The Los Angeles Caregiver Resource Center helps caregivers cope with the strains and stresses of caregiving. 1 800 540-4442 It all starts with a call