This module is an overview of the complex role of family caregivers and the needs and issues of older relatives that need help. This module will provide a background for understanding your own family caregiver role and the experience of aging for your family member.
Click on a topic below to go to that area of the page:
1 Who Me? I`m not a caregiver.
2 National Family Caregiver Support Program
4 Demographics from the Administration on Aging and the 2000 US Census data
5 Needs and Issues of Older Adults
7 Caregivers: The backbone of Long – Term Care
8 Scope and Activities of Family Caregivers
10 The Adult Child and the Caregiver Role
11 Grandparents Raising Grandchildren
12 Impact of Aging on the Family
14 Diversity and Aging People are different!
17 How Caregivers Help Older Adults
Most family members who help older people don`t see themselves as caregivers. Yet a caregiver is anyone who helps an older person with household chores, errands, personal care, or finances. You are a caregiver if you do any of these things.You are a family caregiver if you help someone who cannot do or is limited from doing any of these things for him/herself.
“One of the biggest dilemmas for people in the field of caregiving and for grassroots organizations has been how to reach family caregivers. The majority of family caregivers don`t self-identify. They don`t know that they are caregivers.” A 2001 survey was conducted conducted on Caregiver Self-Identification by the National Family Caregivers Association, a grass roots advocacy organization for family caregivers of people with disabilities and older adults.
There are only four kinds of people in this world:
Those who have been caregivers;
those who currently are caregivers;
those who will be caregivers; and those who will need caregivers.
–Rosalynn Carter
Most family members who help older people don`t see themselves as caregivers. Yet a caregiver is anyone who helps an older person with household chores, errands, personal care, or finances. You are a caregiver if you do any of these things.
You are a family caregiver if you help someone who cannot do or is limited from doing any of these things for him/herself.
- Drive an older family member to and from medical appointments.
- Communicate with health care professionals.
- Contact community service organizations such as the Area Agency on Aging, Meals on Wheels, or the Alzheimer`s Association.
- Help arrange for home health care or hospice services.
- Assist someone to pay bills.
- Help someone clean his/her home or arrange for housecleaning.
- Do home repairs or arrange for someone else to do so.
- Do yard work or hire someone else to do so.
National Family Caregiver Support Program
Advances in medical care mean that people are living longer and healthier lives. Although many older adults have few health problems, more than half experience chronic health problems and may require the help of family members. These family caregivers provide a wide range of assistance from calling and visiting to accompanying their relative to medical appointments, to providing around the clock health care.
Federal legislators recognize family members as the backbone of our nation`s elder care system. Yet, they realize that family members must be supported with information and direct services so that they can make the best decisions for their families and themselves. In 2001, Congress amended the Older Americans Act and created a new National Family Caregiver Support Program. In Texas, funds were allocated to 28 area agencies on aging through the Texas Department on Aging.
The National Family Caregiver Support Program provides the following categories of services:
- Information about services.
- Assistance with access to services.
- Individual counseling, support groups and caregiver training.
- Respite care.
- Supplemental services such as adults day care, homemaker assistance, and home repair.
National Family Caregiver Services vary somewhat by county.
Those who live in the 14 counties surrounding the Dallas/Fort Worth Metropolitan area should call the Area Agency on Aging of North Central Texas at 1-800-272-3921.
Those who live in Tarrant County should contact the Area Agency on Aging of Tarrant County by calling (817) 258-8180.
People who live in Dallas County should contact the Area Agency on Aging of Dallas by calling (214) 379-4636.
Up to 10% of funds may be set aside to support grandparents over age 60 who are raising children under the age of 18. The Tarrant County Area Agency on Aging provides these services.
Note: The above link will open in a new window.Many myths about aging stand in the way of family caregivers knowing what the needs of their aging family members truly are.Let`s take a look at some of facts and some of the myths
Consider the statements in the What is Your Aging I.Q.? quiz by clicking on the link to the left.
Scroll down to see if your answers agree with the quiz.
Click the `x` (close window) box in the upper right hand corner to return to this page.
What surprised you about the answers? How could belief in some of these myths affect the relationship between the family caregiver and the aging family member? (Some answers might be: people make assumptions; don`t listen; put everyone in the same category, e.g., everyone who is older is forgetful.)
What is aging? Aging is not a disease and aging does not cause disease. Aging is a normal, natural process that begins at birth. However, people age differently depending on their heredity and lifestyle. 3
Demographics from the Administration on Aging and the 2000 US Census data
Census 2000 Data Note: The above link will open in a new window.
Older Americans are the fastest growing population group.
The most rapid population growth is among persons 85+.
By the year 2005, one-fourth of the U.S. workforce will be 50 or older.
Between 2010 and 2030 there will be a rapid increase in number as Baby Boomers reach age 65.
By 2030, one of every five Americans will be 65+.
Someone in the U.S. turns 50 every 75 seconds.
People over 50 control 70% of the total U.S. wealth.
Over 50% of all Americans age 65+ have one or more disabilities.
Over 1/3 of all Americans age 65+ have severe disabilities.A growing older population will increase the demand for special services. This means that health services, housing, and related community services will have to adjust to meet the needs of older adults.
Needs and Issues of Older Adults
The goal of all caregivers is to help older adults maintain the highest level of independence that they can.
Like anyone else older adults need to be self-reliant, in control of their own lives, feel safe, be understood, and be respected. Common issues facing older adults include adequate income; physical and mental health; suitable housing; a variety of community services; retirement in health, honor and dignity; opportunity for meaningful activity; access to transportation; and protection from abuse, neglect and exploitation. 1
Caregivers may be related to older persons as spouses, children, in-laws, or other family members. Sometimes, caregivers are not related but assist as friends or neighbors.
The caregiver role is complex and differs for everyone depending on the needs of the person who is aging. A 2001 study by the American Society on Aging found that 29% of family caregivers were daughters.
26% of caregivers were friends and neighbors. With today’s mobile society family members may live out of town and out of state. As such, older persons may have to rely on people other than family members to help out.
23% of family caregivers were wives, and 13% of family caregivers were husbands.
9% of the caregivers were sons.
| Caregivers: The backbone of Long- Term Care | ||
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| Scope and Activities of Family Caregivers | |||
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The term “Sandwich Generation” describes a relatively new phenomenon of adults balancing three major responsibilities: leading their own lives, raising their own children, and helping their aged parents. Although families helping older relatives is not new the complexity of today`s society is. The complex lives of caregivers may include demanding full time careers that require travel or living far away from their aging family member.
“I feel like I’m in the middle of a sandwich” Charlotte exclaimed, running a nervous hand through her graying dark hair and shaking her head. “On one side I have my parents telling what to do, expecting me to call every day, depending on me to do things for them they can’t do themselves, like shop and drive them to the doctor. They make me feel guilty because I’m never as good to them as they would like me to be. On the other side, I have my teenage kids, who have become a bigger burden every year. They take up so much of my time, thoughts, and money. Even my 20-year-old. He still costs us quite a lot because he’s going to college. He uses my car and leaves me stuck in the house. He and his younger brothers all expect me to keep the refrigerator full of their favorite foods and then seem to think I’ll always clean their rooms and do their laundry…”
“People Caught in the Middle,” Sandra Pesman, Chicago Daily News, 1977
In the Middle the AARP Full Report on middle-age family caregivers
Note: These links will open in a new window.
AARP completed a major survey in 2001 about middle aged American family caregivers.
Click to review this report. What can you identify with from these key findings?
Significant Findings from the In the Middle Report
The Adult Child and the Caregiver Role
Many of today`s caregivers are different from those of the past. The most common family caregivers are middle-aged adult daughters. Sometimes these caregivers feel that it is their responsibility to take on the task of caring for aging relatives, including their own family members and in-laws.
As more women have entered the work force, more caregivers have had to juggle responsibilities to family members and to employers. However, few corporations offer elder care benefits. Although there have always been multi-generational families who lived together and helped out with their elders, society has changed. Many families have two career couples or may live far distances from family members. These lifestyles are a relatively new concept and there are few role models to follow.
Most families have to make tough choices as loved ones grow older. Their relationship with older relatives may change, based on the degree of independence of family members are able to maintain and the history of the relationships.
Grandparents Raising Grandchildren
Four-and-a-half million children are living with grandparents as primary caregivers. Over 2 million grandparents are raising children under the age of 18. Thirty-eight percent are being raised by grandfathers. Grandparent heads of household have grown by 105% since 1970.
Custodial grandparents are 60% more likely to live in poverty than the average population. Twenty seven percent of children in these homes are living in poverty.
Why is this phenomenon important? When some of these grandparents begin to experience chronic health problems they may need help for themselves and their grandchild. The grandparents may need financial and health assistance. 2
| Impact of Aging on the Family | |||
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| Emotions of Caregiving | |||
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Diversity and Aging People are different!
| Just as we age in different ways, cultures and ethnic groups view aging and older adults differently.
People from different backgrounds seek and accept help in different ways. Family members have to talk about the needs of older family members and decide on what roles fit the culture of the family and the skills and abilities of different family members. Questions that need to be addressed once the needs are identified include: Health and human service providers need to recognize the many different ways that families provide care and seek help. They must adjust their services instead of expecting or requiring all families to be served the same way. Some families will not accept services if they feel that they are being forced to accept help in ways that do not fit their values and culture. Advocate for what you need! Family caregivers must ask for services tailored to their needs, recognize their cultural background, and value what is important to them. The advocate role may mean educating health care providers and human service providers about your unique culture and how your family provides assistance to older family members. We need to encourage and expect service providers to be “culturally competent” by adjusting to the needs of a diverse society by being flexible and responsive to individual family needs. |
Long Distance Caregiver Assessment
AARPs Long Distance Caregiver Information
Note: The above links will open in a new window.
Parts of this section written by John Myers, MMFT, LPC, LMFT.
A growing number of family members are caring for older relatives who live long distances away. American society is highly mobile and family caregivers may not see their relatives more than a few times a year. It is essential that time spent together is used to ensure independence, health, and safety. Families have to discuss and plan for financial, legal, medical, social, and emergency issues.
Engage your relative to evaluate the current situation, recognize problems, activate informal supports (friends, church, and neighbors) and coordinate community services. Go to the Long Distance Caregiver Assessment link to the left and use this as a tool.
Long distance hints:
During visits, observe hygiene, eating, condition and safety of the home.
Review financial records, if possible.
Refer to the AARP`s web-site for valuable information about long distance care.
Allow yourself enough time to get things done during visits.
Identify community resources and establish local support systems and back-up plans including neighbors or friends.
Recognize that how you see the situation may be very different from how your relative sees it.
For Further reading on this topic, see Module 10~Long Distance Caregiving
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How Caregivers Help Older Adults
Caregivers help those who need assistance by
- Being supportive and helping the older person lead as normal a life as possible.
- Supporting recipient`s independence and self-sufficiency.
- Encouraging recipients to make choices to determine the course of their lives.
- Reinforcing a feeling of productivity and involvement.
- Helping use health care and community support.
- Increasing knowledge of illness or disability.
- If necessary learning how to provide personal care; perform first aid and CPR; lift without injury; use Hoyer and chair lifts; do bed transfers and use bathroom chairs.
- Helping recipients feel useful.
- Bringing a positive attitude to the caregiving relationship.
- Taking care of themselves and clearly defining their own role and limitations.