Navigating the Rough Watersof Family CaregivingPresented By: Donna Benton, Ph.D.
Who is a Caregiver? Definition: Anyone who cares for and givesunpaid support to a family member, friend, orneighbor who is frail, ill, or disabled and wholives 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 isinvolved in care to persons aged 50 or over. 25.8 million family caregivers provide personalassistance to adults (aged 18+) with a disability orchronic illness. More than 7 million spouses, adult children, otherrelatives, and friends or neighbors provide unpaidhelp to disabled older adults living in thecommunity.(Family Caregiver Alliance, 2003)
Who Are the Caregivers? 85% of all home care is provided by family membersand friends. 71% of all long-term care is provided in thecommunity. 14% of home care is rendered by paidproviders. 72% of caregivers are female.(Family Caregiver Alliance, 2003)
Long Distance Caregiving Definition: Caregivers who travel a distance ofone hour or more to care for older adult needingassistance. Nearly 7 million Americans are long-distancecaregivers for older relatives. The average travel time for these caregivers toreach their relatives is 4 hours.
Strains of Caregivers 25% of care receivers need to be lifted, movedwhich often results in muscle strain/back pain. 16% of caregivers indicate that their health hasworsened since becoming a caregiver. 46% are clinically depressed. 2 to 3 times more likely to use prescription drugsfor anxiety, depression, insomnia. 80% of working caregivers report emotionalstrain.
Introduction to CommunityCare Options The challenges of caregiving can be overwhelming forthe friends and family of someone with an illness. Caregivers are responsible for a variety of care needs(examples: physical, household chores, long-termcare planning, and providing emotional support andother daily needs). There are resources in your community to help youwith the care of your loved one.
Assessing Your Needs: Make a list of your needs and problems as theyhappen so you know what kind of help you need.
Assess Your Situation: What is the friend’s or family member’s level offunctioning? What type of help does my loved one need to live asindependently as possible? How much money is available to pay for outsideresources? 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 memberswilling to provide? What specific types of help are still needed?
Contacting Community Resources: Start looking for information before yoursituation becomes overwhelming. Write down all the information you are given.Obtain the name of the agency, person you spokewith, date of your conversation, servicesrequested, services promised and any agreed-upon information. When you call be prepared with information ofthe medical doctor’s name, diagnosticinformation, insurance coverage and Medicare,Medi-Cal, and Social Security Numbers (whenrelevant).
Contacting Community Resources(Continued): With agencies, be assertive and specific aboutyour 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 fundingfor 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 foron-going needs Transportation Services Trips to and from medical appointments, dayprograms 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 aboutsolutions to common problems
Further Care . . . . . Many caregivers continue providing care beyondtheir physical and emotional capacity beforeconsidering long-term placement for theirimpaired relative. Yet moving to a residential facility may be theonly way to relieve the caregiver.
Issuesmay signal theneed to consider for . . . .Out-of-Home Care Options Caregiver providesfor around-the clockcare (or supervision). Caregivers health isgreatly affected. Caregiver suffer fromexhaustion, stress,fear, isolation. Your relative wandersaway from home. Your relative cannotcomplete theiractivities of dailyliving (ADLs). Your relative receivesno rehabilitation athome.
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 nursingservices 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 onindependent with secured grounds
Information & Referral (I & R) Help identify what resources exists. For example, the local Caregiver ResourceCenter, Area Agency on Aging (AAA),Senior Centers are a few organizations. Point of entry to housing, food, and adultday care programs.
Case Management Services Provide assistance in locating and managingservices for ongoing needs. Case managers usually have a background incounseling, social work, or related health carefield. Case managers may help determine eligibility forentitlement programs, plan for long-term careand intervene in crisis situations.
Respite Care Definition: Relief for family and friends so theycan take a break from the demands of providingconstant care. Respite care includes adult day care andhome care services, as well as, overnightstays in a facility, and can be provided fora few hours a week or for a weekend.
Adult Day Care Offers participants time to socialize, enjoy peersupport and receive health & social services. Provides a break for caregivers responsible forperson. 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-relatedservices.Adult Day Health Care: offers more intensivehealth, therapeutic & social services forindividuals with severe medical programs andthose at risk of requiring nursing home care.
Support Groups Brings together persons to meet, shareinformation and talk about solutions to commonproblems. Source of information on available resources. Opportunity to give and receive encouragement,understanding, and support from others whohave similar concerns. Knowledge that person is not alone. Groups are held at hospitals and disease-specificsupport organizations.
Home Care Combines health care and supportiveservices to help homebound individuals ordisabled persons. Hours, types or services and level of carevary due to the needs of the person. Aides can be located through personalreferrals or at a private home healthagency, hospital, public health departmentor other community organizations Costs is dependent on level of care needed.
Home Care (Continued)For homebound individuals in need of skillednursing, a plan of treatment is prescribed by amedical 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 careis not usually needed unless there are additionalmedical problems. A Homemaker, Chore Worker, or Home HealthAide to help for a few hours a day or week toassist.
Transportation Services Trips to and from medical appointments,day programs, and other services. Volunteer drivers, bus, taxi, or speciallyequipped van services. Generally requested in advance and on aregular schedule to go to weeklyappointments. There is usually a fee for riding.
Nutrition ProgramsCongregate Meal Programs:Provide mealsusually lunchin a group setting. Many churches,synagogues, housingprojects, senior centers,community centers, andday programs offermeals. Minimal fee for services.Meals-on-Wheels Programs:Provides homebound individuals who areunable to shop for or prepare theirown meals. Various groups providesthis and it may be fundedpartially withgovernment money or bycharitable groups. Delivered on weekdays. Nominal fee for services.