chapter 10: informal and family caregivingwhat is informal caregiving: grandparents as primary...

AGING MATTERS

Chapter Seven:

Informal and Family Caregiving

Dr. Babcock

What Is Informal Caregiving?

• Caregiving is the act of assisting people with personal care, household chores,

transportation, and other tasks associated with daily living provided either by family

members without compensation or by professionals.

• Informal caregiving is used interchangeably with “family” but that type of care can be

performed by friends and neighbors.

Copyright (c) 2015 Pearson Education, Inc. All rights reserved.

What Is Informal Caregiving: What Kind of

Informal Care Do Some Older Adults Need?

• The kind of informal care that we might need as we age is wide ranging and differs in

intensity from person to person.

• The primary forms of care provided by informal caregivers:

• Emotional support

• Help with instrumental activities

• Personal care or direct assistance with ADLs

• Financial help

• Contacting service providers and advocating for and coordinating services


What Is Informal Caregiving: Who Are

Informal Caregivers?

• Family members, neighbors, or “family of

choice” among LGBT populations

• Nearly 66 million or almost 29% of all

adults in the U.S. provide care to

someone who is ill, disabled, or elderly.

• 44 million are caring for someone 50

years of age or older and 15 million are

caring for someone with dementia.


What Is Informal Caregiving: Losses and

Gains of Informal Care


What Is Informal Caregiving: Costs of

Informal Caregiving

• Primary stressors are events that directly derive from an elder’s illness.

• Secondary stressors are not secondary in terms of their importance, but so called because

they do not arise directly from the older person’s illness; they occur when primary stressors

spill over into other aspects of the caregivers’ life.

• Caregiver burden is the physical, emotional, and financial costs associated with care.

• Objective burden refers to daily physical tasks, e.g., handling legal, employment, and financial

problems of elders.

• Subjective burden encompasses the caregivers’ emotions or feelings, e.g., grief, anger, etc.


What Is Informal Caregiving: Benefits of

Informal Caregiving

• Although research has typically focused on the burdens or negative aspects of informal

caregiving, it encompasses positive experiences as well, such as:

• Confidence

• Self-affirmation

• Pride

• Greater closeness with care recipient


What Is Informal Caregiving: Adult Children

as Caregivers

• The gendered nature of caregiving: Women are still the primary nurturers and kin

keepers; women form about 66% of all primary family caregivers.

– Caring for refers to help with daily personal care tasks that entail intimate contact

– Caring about means relational aspects of care that involve a sense of psychological

responsibility or nearly constant worry


What Is Informal Caregiving: Spouses as

Caregivers

• Of all family caregivers of older adults, it

is usually the spouse or partner age 75

and older who performs up to 80% of

care tasks.

• When men are primarily caregivers, it is

typically as husbands; they comprise

nearly 40% of spousal caregivers.

• Men and women spouses/partners

experience care responsibilities

differently.


What Is Informal Caregiving: Family

Caregivers of Color

• As compared to white caregivers,

African-American caregivers tend to:

– Provide higher levels of care

– Have higher levels of self-efficacy

– Be more economically disadvantaged

– Be less likely to have alternative

caregivers

– Be less likely to use formal supports


What Is Informal Caregiving: Friends as

Caregivers

• Family members are sometimes unavailable or unwilling to provide care.

• Many older adults—especially LGBT elders—turn to friends and neighbors to provide

some support.


What Is Informal Caregiving: Caregiving for

Persons with Dementia

• Caregivers for persons with dementia provide the most difficult kinds of personal care,

spend more hours per week giving care (“constant care”) and do so for longer periods of

time without any break.

• Caregivers of persons with dementia are at a higher risk of emotional stress, mental and

physical health problems, and family conflicts.


What Is Informal Caregiving: Grandparents as

Primary Caregivers

• The number of grandparents who are primary or sole caregivers to their grandchildren

has grown dramatically in the past three decades.

• Skipped-generation households are composed of grandparents and grandchildren,

which are the fastest-growing type of family in the U.S.

• There are rewards and challenges for both the grandparent and grandchild living in this

type of family.


What Is Informal Caregiving: Legal Issues

Related to Grandparent Caregiving

• Grandparent or great-grandparent caregivers typically face legal challenges that add to

their burden or stress.

• The best option for most grandparents is to obtain legal custody, whereby the

grandparents assume legal authority to make decisions, but birth parents remain

financially responsible for the children and the right to visitation.

• Websites can provide an overview of legal issues and kinship care navigators (an

advocacy program) can also help sort through legal issues.


What Is Informal Caregiving: Legislation and

Policies to Support Family Caregivers

• Family and Medical Leave Act: Businesses with 50 or more employees are required to

grant up to 12 weeks of unpaid level annually when a child is born or adopted; when a

child, a spouse, or parent with a serious condition needs care; or when the employee is

unable to work because of a serious health condition.

• National Family Caregiver Support Program: The law requires that the Aging Network,

which is funded by the Administration on Aging, must serve not only older adults but

also family caregivers age 18 and older who are caring for an adult age 60 and older and

older-kin caregivers of grandchildren.

• Family-centered care is an approach to caregivers that views them as clients in need of

services and support to address their own needs and as partners in decision making.


Services and Support for Caregivers: Why

Don’t Caregivers Use Services?

• Interventions are things that can be done to support family caregivers, such as

providing information or linking them to services. An assessment of caregivers’ needs is

the first step toward identifying services that caregivers will perceive as supportive and

will reduce their burden.

• Caregivers may be unaware of services

• Caregivers may be unable to afford them

• They resist accepting help, thinking they can “do it on their own”

• They do not identify themselves as caregivers needing support


Services and Support for Caregivers: Effective

Evidence-Based Interventions

• Psychoeducational groups, skills training,

and treatments

• Support groups

• Modifying the home environment

• Respite care

• Electronic supports


Services and Support for Caregivers: Future

Service Directions

• Support services should be culturally competent and accessible, such as in primary care

clinics, the workplace, senior and community centers, faith-based institutions, and

schools.

• Self-care for caregivers is an essential component in reducing stress and preventing out-

of-home placement.


When Caregiving Becomes Too Much

• Placement in long-term care facilities: The move to a long-term care facility is often the result of a

breakdown in the balance between the older person’s care needs, the primary caregiver’s resources,

and the larger support network.

• Elder mistreatment encompasses any knowing, intentional, or negligent act by a caregiver or other

person that harms or causes risk of harm to a vulnerable adult.

• Financial abuse and exploitation

• Reporting and other legal requirements: All 50 states have procedures for reporting domestic abuse

and nearly all states have made such reporting mandatory for healthcare providers.

– Adult protective services is the state or county system that investigates reported cases, evaluates

risk, assesses the elder’s capacity to agree to services, develops and implements care plans, and

monitors ongoing service delivery.

– Elder Justice Act 2010

– The National Committee for the Prevention of Elder Abuse (NCPEA)


Underpaid Caregivers: Direct Care Workers

• Direct-care workers are the nurse aides, personal assistants, and home care staff who

provide hands-on care in both home and long-term care settings; also referred to as

“chronic care workers.”

• Defining characteristics of direct care workers:

– 90% are women, often single mothers responsible for dependent children

– 51% are African American, Asian and Latina women

– 20-25% are foreign-born women

– Many are low-income younger women


Unpaid Caregivers: Economic and Health

Disparities Faced by Direct Care Workers

• Direct care workers make an average

income of $17,000 a year, well below

the median wage for all U.S. workers.

• Additional problems faced by

healthcare workers include:

• Unpredictable hours

• Lack of full-time work

• Limited or nonexistent health

and other types of benefits


Unpaid Caregivers: Economic and Health

Disparities Faced by Direct Care Workers

• To recruit and retain a direct care workforce, certain changes need to be made:

– Competitive wages

– Healthcare benefits

– Scheduling and staffing practices that support stable hours and income

– Improved orientation and training

– Involvement in decision making

– Creation of opportunities for advancement and job enrichment

– Supervisory practices that will promote retention


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