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Chapter 7 - Informal & Family Caregiving
Terms in this set (50)
Types of informal caregivers
- adult child or other family member
- extended Kin
Gender differences in caregiving (men caregivers)
- men more likely to provide long distance care
- men more likely to forego business related travel
- men less likely to discuss responsibilities with colleagues
Gender differences in caregiving (women caregivers)
- women more likely to provide personal care
- women more likely than men to experience depression
- women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty & 5 times more likely to receive Supplemental Security Income (SSI).
- disrupted sleep patterns
- special diets
- multiple and changing medications
- Functional limitations
4 needs of older adults
- self reliance
- control over own life
8 issues of older adults
- adequate income
- physical and mental health & health care
- suitable housing
- comprehensive array of services
- retirement in health, honor and dignity
- opportunity for meaningful activity
- access to transportation
- protection against abuse, neglect and exploitation
Family & Medical Leave Act
Businesses with more than 50 employees are required to grant up to 12 weeks of unpaid vacation when
- a child is born or adopted;
- when a child, 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.
Legislation and Policies to Support Family Caregivers
- family & medical leave act
- national family caregiver support program
National Family Caregiver Support Program: Administration on Aging
Funds set aside by the Administration on Aging through the enactment of the amendments to the Older American's Act (2000)
- administered through the states units on aging
- projects planned and implemented by the area agencies on aging (AAAs)
- caregivers may be of any age; care receivers must be over age of 60.
Up to 10% of funds may be set aside to support people over age 60 who are raising children under the age of 18
National Family Caregiver Support Program: Administration on Aging
5 categories of service
- information about services
- assistance with accessing services
- individual counseling, support groups and caregiver training
- respite care
- supplemental services
planned or emergency short-term relief for caregivers from the demands of ongoing care
- may be in- or out-of-home care
- example: adult day health or overnight
care in a long-term care facility
Costs of Informal Caregiving
Informal caregivers face at least 2 kinds of stressors: primary and secondary
- these stressors create a sense of caregiver burden
2 types: objective and subjective burden
events that derive directly from the elder's illness
- such as cognitive impairments and associated behavioral problems
- not secondary in terms of their importance, but are so called because they do not arise directly from the older person's illness.
- instead, they occur when primary stressors spill over into other aspects of the caregivers' life, such as their jobs or friendships.
- common secondary stressors are role strains (ex: difficulties adjusting to the caregiver role), financial losses, and deterioration of the caregivers' sense of mastery and self-esteem
the physical, emotional, and financial costs associated with care
2 types: Objective and Subjective Burden
refers to daily physical tasks
- such as managing the care recipient's symptomatic behaviors, driving them to doctor's appointments, and handling legal, employment, and financial problems.
encompasses the caregivers' emotions or feelings
- such as grief, anger, guilt, worry, loneliness, and sadness
families of choice, not relatives in the formal sense, whose members provide the kind of love and support that caring family members do for each other
Facts on Informal Caregiving
Caregiving is a family affair
- 80% of all eldercare is provided by family members
- one of every 4 households provides help to an elder person
- without family or friends, estimated costs for home care alone would be nearly $94 billion a year.
- nearly 66 million (~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 or older
- 15 million are caring for someone with dementia
Reasons that Informal Eldercare is increasing
- growth of older population
- decrease in family size
- increase in two-earner households
- cost of formal healthcare services
Impact of Aging on the Family
- are hesitant to use formal help
- continue to provide care with little support
- experience adverse consequences to their own physical and mental health
- use formal services only as a last resort
Expectations DO NOT EQUAL energy and abilities
Cultural differences in supportive family structures
- currently, over 8 million Hispanics are caregivers to older adults
- more multi-generational households
- females are predominantly the caregivers of the elderly
- rates of poverty are higher
Progression of the Caregiver Role
the amount of caregiver assistance needed depends on the progression of illness and loss of independence.
- a chronic illness requires the most assistance from a family caregiver
Most caregivers work AND provide care for an older adult
Cycle of Caregiver Feelings
Fatigue, Anxiety, Stress, Resentment, Guilt, Depression
Most common feelings caregivers have toward aging loved ones
- guilt feelings are inevitable
- survivor guilt: usually comes from any or a combo of sources related to their expectations, care recipient's expectations, and code of ethics
Benefits of Informal Caregiving
- greater closeness with care recipient
Economic Value of Informal Caregiving
- The value of the services family caregivers provide for "free" is estimated to be $306 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).
middle-aged adult children, particularly daughters and daughters-in-law, are referred to as the sandwich generation because of competing responsibilities of parental and child care.
- ex: a mother who is still taking care of her children, plus helping care for her parents.
Caregiving for Persons with Dementia
- they 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 for persons with dementia are at a higher risk of emotional stress, mental and physical health problems, and family conflicts.
families whose memberships comprise blood and non-blood relationships through divorce or remarriage
normal for middle-aged parents when adult children leave home for college or employment
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 primary caregivers, it is typically as husbands -- they comprise ~ 40% of spousal caregivers
- men and women spouses experience care responsibilities differently.
grandparents and grandchild household where the middle or parental generation is absent
- fastest growing type of household in the U.S.
family structures that differ from the nuclear family, derived through gay and lesbian partnerships, heterosexual cohabitation, informal adoption, etc.
- family caregivers' roles are viewed as essential to their older relatives' well-being, not secondary.
- both older adults and family caregivers are 'clients'.
- caregivers are not just a resource to their older relatives, but individuals who may need information, training, and other support.
- the caregiver's own health and well-being should be assessed as part of the care plan
- the care plan should reflect the goals and preference of both the older adult and the caregivers
- family caregivers are part of the care team and should be involved in decision making.
Services and Support for Caregivers
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 they will perceive as supportive and will reduce their burden -
Reasons Caregivers Don't Use Services
- they are unaware of these services
- they cannot afford them
- they resist accepting help, thinking they can do it on their own
- they do not think they need the support
Effective Evidence-Based Interventions
- psychoeducational groups, skills training, and treatments
ex: REACH program is one of the most
programs using a combo of cognitive-
behavioral and mood management
- support groups: generally not highly structured
- modifying the home environment
- respite care: can provide caregivers with a break from their daily demands
- electronic supports: toll free information and referral lines
mistreatment of older adults, including physical, sexual, or psychological abuse, financial exploitation, and neglect
deprivation of care necessary to maintain elders' health by those trusted to provide the care (neglect by others) or by older persons themselves (self-neglect)
- neglect accounts for most of the reported cases of elder mistreatment
the older adult engages in behavior that threatens their own safety, even if mentally competent.
- more prevalent than neglect by others but less reported
IT IS NOT ILLEGAL TO SELF-NEGLECT
a type of self-neglect in which the person excessively saves things, often putting themselves or others at risk
abusive behavior when a person uses role and power to exploit the trust, dependency, and fear of another, often around financial matters
- difficult to detect
Adult Protective Services
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.
- 9 out of 10 APS programs have seen increases in reports of elder abuse in recent years
Intimate Partner Violence
domestic violence between partners/spouses
- this type of violence is reported less than younger partner violence.
- less reported by women
a form of mistreatment in which a person's finances are wrongly exploited
Physical Costs of Caregiving
- increased risk of illnesses such as hypertension
- lower physical stamina
- sleep disorders
- inappropriate medication usage
Caregiving for a person with dementia, tends to have the most negative effects on physical and mental health
Psychological Costs of Caregiving
- increased risk of depression and anxiety b.c of compromised immune systems
- subjective burdens tend to be the most draining on a caregiver's physical and emotional vitality
- they encompass a variety of emotions
Financial Costs of Caregiving
These encompass the direct costs for:
- medical care
- adaptive equipment
- or hired help
Indirect opportunity costs from:
- lost income due to missed days from work
- interruptions at work
- forfeited promotions
- needing to quit a job
- reduced retirement benefits
The employment of caregivers of people with dementia is more negatively affected
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