Navigating the Rough Watersof Family Caregiving

Presented By: Donna Benton, Ph.D.

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 may signal the need to consider for . . . .

Out-of-Home Care Options Caregiver provides

for around-the clock care (or supervision).

Caregivers health is greatly affected.

Caregiver suffer from exhaustion, stress, fear, isolation.

Your relative wanders away from home.

Your relative cannot complete their activities of daily living (ADLs).

Your relative receives 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 ProgramsCongregate Meal Programs:

Provide mealsusually lunch

in a group setting.

Many churches, synagogues, housing projects, senior centers, community centers, and day programs offer meals.

Minimal fee for services.

Meals-on-Wheels Programs: Provides homebound individuals

who are unable to shop for or prepare their own meals.

Various groups provides this and it may be funded partially with government money or by charitable groups.

Delivered on weekdays. Nominal fee for services.

Questions