Family Caregiving 101

by Connie Siskowski, RN, MPA

For hundreds of years family, friends and neighbors took care of each other during times of illness, injury or other need. Medical and nursing care offered comfort but few cures; life expectancy was limited. Today, people are living with the very diseases and injuries that caused early death a couple of decades ago. Advances in medicine and technology now allow the delivery of complex treatments and therapies in both facilities and at home.

The healthcare system assumes that everyone benefits from quicker discharges to home. But, what really happens after a patient goes home – and, what about their families?

Ideally, discharge planning begins when patients enter a healthcare facility. This eases the return to home or the transition to a rehabilitation center, nursing home or hospice. Providers expect that after discharge to home, family and friends can and will provide care and support as well as coordinate services, supplies and medications. When providers make discharge decisions, how much thought goes into to evaluating the home situation and the family caregiver’s capabilities? Who pays attention to the long-term impact that illness, especially chronic illness, can have on the family unit?

In the New England Journal of Medicine, Carol Levine, herself a social worker who remains gainfully employed even after 10 years of family caregiving, documents her nightmare that began with her husband’s accident:

“The social worker assigned to my case had one goal – discharge. I was labeled a ‘selfish wife’ since I refused to take him home without home care. ‘Get real,’ the social worker said, ‘Nobody will pay for home care. You have to quit your job and spend down to get on Medicaid.” (1)

Care at home, once only provided for a few weeks or months, now endures for years, with loved ones often surviving much longer than anyone ever expected. A 1997-landmark study conducted by the National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP) documents that the average duration of caregiving is 4.5 years. (2) Two years later a report from Employee and Family Resources states that adult children can expect 18 years of elder care duty. (3) Other factors such as the desire to “age in place” and the cost constraints of managed care, also promote today’s trend toward increased care at home. Unpaid persons, typically family members or friends, provide more than 80% of all assistance and personal long-term care at home. (4)

Who Needs Care and What Types of Care are Provided?

The ten main conditions requiring care in the NAC/AARP Report are the result of “aging”, mobility problems, dementia, heart conditions, cancer, stroke, arthritis, diabetes, lung disease and blindness or vision loss. That same report found that more than half of the caregivers assisted with Activities of Daily Living

(ADL’s) such as transferring in/out of chairs, dressing, bathing, toileting, feeding

and continence care. And, nearly all (98%) assisted with Instrumental Activities of Daily Living (IADL’s) including transportation, grocery shopping, housework, preparing meals, managing finances, arranging/supervising outside services and giving medications.

Families in all caregiving situations require information, education, guidance and support to enable them to continue their various roles. However, many are not aware of choices for care including for assistance and relief. Home healthcare services, which traditionally helped fill in family care gaps, are dwindling in the face of Medicare reductions and managed care limitations. With reduced resources for help at home, nurses and other healthcare professionals have limited options to support patients, much less their family caregivers. Persons with long-term care insurance and those who are able to pay privately are among the few who may receive adequate help with care at home.

How Many Caregivers in the U.S. and What is Their Value to Society?

How many family caregivers are there in the United States? The industry and the government have been struggling with this answer for the past several years. Caregivers do not always recognize themselves – the transition is “gray” from dutiful wife or daughter to caregiver. Currently two principal national caregiving/caregiver organizations, the National Alliance for Caregiving (NAC) and the National Family Caregivers Association (NFCA) are working on a research project to learn why caregivers don’t self identify and also to learn how best to communicate and help them.

The 1997 NAC/AARP Report, Caregiving in the US., documents that there are 22.4 million households involved in caregiving in the United States. The definition of caregiving in this random sample research includes people:

· Caring for persons over the age of 50

· Occurring some time within the past 12 months

· Assisting with ADL’s and IADL’s

In 1998, Peter Arno Ph.D. and others published The Economic Value of Informal Caregiving that calculates the value of caregiver services. (5) The basis of their estimate of $196 billion per year is 25 million caregivers at a rate of $8.15/hour. This is the family caregiver annual contribution to society for (unpaid) labor and services. Data from the National Survey of Families and Households (NSFH) for 1987 and 1988 and the Survey of Income and Program Participation (SIPP) for 1986 provided the mid-range of 25.8 million caregivers. They projected this data forward to 1997. The definitions of caregiving in their work includes:

· Caring for persons at least 15 years of age (SIPP) or 18 years of age (NSFH)

· Providing personal care

· Needing assistance because of a health condition (SIPP), disability or chronic illness (NSFH)

Also, in 1998, The Assistant Secretary for Planning and Evaluation (ASPE) and the Administration on Aging of the U.S. Department of Health and Human Services published, Informal Caregiving: Compassion in Action. The data analysis had two parts. Part I analyzed data on "informal" care from the National Survey of Families and Households, (1987 and 1992). This analysis resulted in an estimate of 52 million Americans (31% of the adult population age 20-75) who, during the course of any year, provide unpaid care to a family member or friend who is ill or disabled. Part II looked at a more specific population of caregivers, namely chronically disabled elders. The analyzed data for Part I of the study includes:

· Caring for persons of all ages

· Providing unpaid care which was defined very broadly to include any and all types of assistance

· Helping in the short or long-term

Most recently in the summer of 2000, the National Family Caregivers Association published a report representing that during that year, 54 million people in the United States were involved in some level of caregiving. (6) Bruskin Research firm conducted the survey that determined the number only slightly greater than the U.S. government estimate. The Bruskin technique reflects a custom-designed computer program that automatically develops a weighting factor for each respondent. Then they generalize survey results to the population as a whole. The definition of caregiving used in this research effort that asked questions of adults over the age of 18, included:

· Caring for persons of all ages

· Providing care (interpretation of the term care was left to the respondent)

· Occurring some time within the past 12 months

While there is minor disparity regarding the actual number of family caregivers, there is general industry consensus that based on the 1997 NAC/AARP) Report, the typical profile of a caregiver:

· Is a woman, less than 50 years old, employed and educated through high school

· Contributes about 18 hours/week caregiving

· Spends an average of $171/month out-of-pocket on caregiving

Noteworthy, however, is that as men are living longer, the number of men who identify as caregivers is increasing. The July 2000 NFCA survey found that 266 of 1000 persons interviewed were family caregivers. Among the 266, 44% were men. Another aspect of variation is that there are wide ranges in reports of out-of-pocket caregiving expenses. For example, a 1995 survey of Dupont workers found that 6% of their employee caregivers spent more than $10,000/year on elder dependents for out-of-pocket caregiving. (7) This represents more than $500 per month variance from the NAC/AARP average.

Living Longer – is it Better?

As we enter the era of the aging of the boomer population, people will continue to live longer and many will live alone. In just two decades the Administration on Aging (AOA) projects that there will be 15.2 million people over the age of 65 who will live alone and that nearly twenty per cent of these will need help with at least one ADL. (8) Often assistance is coordinated from a distance. There are an estimated 7 – 9 million parents living more than an hour away from their adult children. (9)

In addition to persons who live alone who require assistance and those who have debilitating chronic health conditions, there are also persons with special needs such as impaired vision and/or hearing loss. And there are yet others who are prone to falls, have mobility problems or have various stages of dementia, neurological, mental illness and/or developmental disabilities. Estimates of the number of elderly persons needing some type of assistance with daily tasks by 2020 is 14 million, double today’s number. (10)

Public concerns about the quality and cost of nursing home care further increases the demand for care at home. For some, facility care is an unthinkable option. This includes even when the need for skilled care exists and/or when the physical demands of caregiving exceed safety factors. Nursing home diversion projects, the return of physician house calls and increasing availability of community support services augment the ability of the family caregiver to continue to provide care at home. Since 1985, the true nursing home population - those with extended stays - has decreased by 18%. (11)

Family In Transition

The changing family unit and its dynamics further compounds the challenges of the issues of an aging population and increasing demand for home care. The availability of family members who are able to devote themselves to caregiving is diminishing. This is for several reasons. Among the factors contributing to this decreased availability of persons within families are:

¨ Societal geographic mobility

¨ Increase in women – and mothers - working outside the home

¨ Decrease in family size

¨ Blended but not necessarily bonded relationships resulting from partnerships and multiple marriages

¨ Childcare provided by grandparents

As caregivers try to juggle several roles and demands, they often do so at personal psychological, physical and financial expense. In spite of the increasing demands of home and workplace on their time and skills, many adult children see caregiving in their future. A 1998 National Partnership for Women and Families poll showed that more than half (54%) of Americans expect to be caregivers for an elderly parent or relative within the next ten years. (12) The relative requiring care may not always be elderly. More than one third of persons receiving home care are less than 60 years of age.

In a recent survey of the “sandwich generation” population – those between the ages of 45-55 with children under age 21 still at home and who are simultaneously caring for a parent, there seems to be marked differences among cultures. The differences occur both with the amount of care and with attitude about caring. Nearly half (42%) of Asian Americans are providing care for parents, while about one third (34%) of Hispanics also do, slightly more than one-quarter (28%) of African-Americans and less than 20% of Caucasians. Hispanics and Asian Americans are generally self-confident about their caregiving roles and, although they spend time, energy and resources to accomplish this, they feel guilty about not doing enough. Caucasian counterparts on the other hand feel less guilty. (13)

At Home Care Intensity

In recent years, not only has the demand for caregivers increased but also the type of care has changed. Additionally, over thirty percent of caregivers take care of more than one person at a time. According to the NAC/AARP study, thirty-six percent (8.1 million people) provided the most intense or “heavy duty” care. This intense care reflects the two highest levels of care, Levels 4 and 5.

A formula that considers the number of caregiving hours per week and the activities of care provided determines the Level (or intensity) of Care. For example, a Level 1 caregiver may spend up to eight hours per week helping with transportation and grocery shopping while a Level 4 caregiver may provide 35 hours per week assisting with bathing, toileting, managing finances, grocery shopping and transportation.

Furthermore, advances in technology support more intense home care. This includes its portability. At home, “high tech” care encompasses such treatments as infusion therapies, peritoneal dialysis, ventilators, feeding tubes and special wound care---all for family caregivers to manage. Sometimes health care professionals expect the delivery of this type of care in the absence of adequate evaluation of the caregiver and/or without the proper discharge instructions.

The Consequences of Intense Family Caregiving

While the majority (70%) of caregivers use a positive description of their caregiving experience, the stresses and demands of caregiving over an extended period takes a toll. This seems to occur more frequently among intense caregivers. The1998 survey of NFCA caregiving members, most of whom provide intense care, showed a high incidence (61%) of self-reported depression as well as other conditions such as backache, stomach disorders, headaches, colds and flu. (14)