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
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
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 1
(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
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
Caring for persons at least 15 years of age (SIPP) or 18 years of
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
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 2
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
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
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)
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 3
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)
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 4
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
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)
More alarming than the increased incidence of depression and physical
conditions, is the Journal of the American Medical Association’s (JAMA) report
that the death rate is higher among certain elderly spousal caregivers. This
December 1999 publication concludes, “…being a caregiver who is experiencing
mental or emotional strain is an independent risk factor for mortality among
elderly spousal caregivers. Caregivers who report strain associated with
caregiving are more likely to die than non-caregiving controls”. Strained
caregivers are sixty-three percent more likely to die within four years than other
spouses who are caregivers or not. (15)
Various reports identify the needs of caregivers. One central theme is
“time for self”, especially for intense caregivers and those caring for someone
with Alzheimer‟s disease or dementia. The 1998 NFCA member survey reflects
that among their intense caregiving population, isolation is a primary factor for
45%. In addition to time for self, the NFCA caregivers wanted someone to talk
to, help from family and community services. The NAC/AARP findings suggest
that 38% of the caregivers did not know what they needed – they do not know
what they do not know. The most recent (2001) AARP study depicts more
caregivers coping and uses the term “squeezed” instead of “stressed” for
sandwich generation multicultural caregivers.
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 5
Employers and Family Caregiving
Over half of family caregivers work in addition to their caregiving
responsibilities. Caregiving is costly to both the employer and the caregiver.
Estimates show the economic loss to businesses is $2500 per year for each
caregiving employee. The MetLife study of 1997 calculates that full time
employed caregivers of elderly relatives cost U.S. employers between $11.4 and
$29 billion a year from: (16)
Absenteeism costs – averages about 6 days per year to fulfill
Replacement costs - for caregiver employees who have to quit
working (includes recruiting, relocation, training and temporary
inefficiency of new employees); calculated at 75% of annual salary of
employees who stopped working
Partial absenteeism – taking extended breaks, arriving late or leaving
early; calculated at an hour per week for 50 weeks
Workday interruptions – including phone calls to coordinate care and
calls to care receiver; calculation based on 1 hour per week for 50 weeks
Eldercare crises intervention – resulting in more phone usage, loss of
concentration and increased absenteeism; at least one incident within a 6
month period reported by 60% of workers; calculated at 3 days per year
Supervision – giving emotional support, arranging for employee
coverage, counseling about benefits and dealing with work disruptions;
calculated at 1 hour per month or 1.5 days per year.
Employers may also experience exposure to higher health care costs
because of depression and stress experienced by caregivers. A 1998 study
showed that 46,000 workers from several large U.S. companies, under stress
and with depression, were more likely to incur significantly higher health care
costs than co-workers without such conditions. Health care bills of employees
with self reported depression were seventy percent higher than those who
reported a low risk of depression. Similarly, employees who reported
experiencing high stress had bills that were forty-six percent higher than ones did
that did not report high stress. (17)
Caregivers Pay a Price Too
The employer is not alone in suffering financial loss; the caregiver also
pays a high price. A follow up of employed caregivers identified in the 1997
NAC/AARP concluded that, caregiving costs more than $659,000 per individual
caregiver over a lifetime. (18) This in-depth analysis, conducted by the National
Center for Women and Aging at Brandeis University found that employed
caregivers lose money because of:
Retiring early, often with reduced Social Security benefits and/or
Taking leaves of absence
Decreasing work hours - and income
Quitting employment entirely
Passing up of promotions or relocation with advancement opportunities
Some corporate cultures demonstrate little understanding of caregiving.
In environments of minimal support, employed caregivers experience a sense of
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 6
discrimination and have concerns for confidentiality. This is apparent in a 1998
survey conducted by The Gallup Organization on behalf of Intracorp, Inc. and
described as follows by Ohio State University Extension Family and Consumer
“Unwritten rules” exist relating to taking care of family needs on
Beliefs are prevalent of employer disfavor when family needs are put
ahead of jobs
Promotions are overlooked when employees juggle schedules
Managers discourage using work/life benefits
In this same study when managers were queried, only one in two felt “very
comfortable” in providing employees with time flexibility. (19) This study concluded
that caregivers were receiving and responding to mixed messages in the work
FMLA Offers Some Help
The 1993 Family and Medical Leave Act (FMLA) governs employers, such
as hospitals and universities, with more than fifty employees. This Act entitles
eligible employees 12 weeks per year of unpaid leave for family caregiving
without losing health benefits or job security. Many caregivers, however, do not
realize that the leave can be broken up in whatever time segments are most
beneficial to the employee, including using a few hours per week. The time
requests require pre-arranged approval and/or justification with medical
Eligibility requirements, restrictions to definition of family and the inability
to take unpaid leave, discourages utilization of this entitlement. The FMLA sets
minimum standards that some states and companies have amended to become
more favorable to the employee. For example, in recognition that caregiving
today extends beyond traditional immediate core family members, language in
personnel policies may now be less restrictive than this Act originally recognized.
The 1997 NAC/AARP report found that only 11% of family caregivers used
this benefit. Current FMLA overall usage is nearly seventeen percent. (20) There
is some evidence of increased FMLA requests specifically for elder care. Boston
located State Street Corporation reports that unpaid time off for elder care now
accounts for fifteen percent of all leave. This has more than doubled in the past
two years. BankBoston also reported that during 1998 elder care accounted for
fifty percent of all extended family leave. (21)
It is the employed worker, the middle-income family, that is hit the hardest
financially because of an individual‟s illness. Loss of most or all of a family‟s
savings is common. The Journal of the American Medical Association reported
on financial losses of 2661 patients. Because of the patient‟s various medical
conditions, nearly one third of these families incurred substantial loss of savings.
There are differences reported by the type of job and the stress of the job
upon the caregiver. Research from the previous decade depicts that an
employed caregiver has less strain and better mental health than a caregiver
who is not also an employee does. However, research of only several years ago
shows that female caregivers of parents who also have stressful jobs experience
cumulative stress. (24) These findings have some limitations, however, due to the
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 7
complexities and uniqueness of family situations, marital relationships, children
who live at home and workplace issues.
There is no doubt that caregiving exists, the demands of caregiving on the
family and in our nation grow daily, that most caregivers are women, and that
many women are employed. Caregivers are not a homogeneous population and
needs of individual caregivers and caregiving situations are important to
recognize. Intense family caregivers are an “at risk” population for depression
and other health conditions and strained elderly spousal caregivers have a higher
mortality rate than those who do not experience strain.
There is also no doubt that both the employer and the caregiver family
incur direct and indirect financial losses because of caregiving. Solutions for the
future must focus on encouraging the caregiver to take a proactive approach for
his or her well-being and to utilize resources to aid the family in the caregiving
journey. The employer and stakeholders can provide support and solutions that
will translate into both cost savings and system efficiencies to improve the lives
of caregivers and their loved ones.
Implications for Making a Difference
Health professionals and others have an opportunity to rise to current
challenges and to begin to make a difference in the lives of family caregivers.
There are many ways to accomplish this. They include:
Helping caregivers identify themselves and recognize their
caregiving role and its implications.
Asking and probing the question, “Are you a family caregiver?” on
health-risk assessments and when taking health histories
Monitoring caregivers‟ health status for early signs of common
conditions associated with caregiving such as depression, back
pain or stomach disorders
Including caregivers as integral players in the healthcare team to
develop a family-centered model of patient care
Encouraging caregivers to practice prevention, take regular respite
opportunities, join support groups and learn stress management
Educating caregivers about reliable resources in the community
and on the Internet
Instructing caregivers in the provision of personal care, including
proper body mechanics and other safety techniques to minimize the
risk of injury
Volunteering in local support services programs to provide respite
and promote caregiver well-being
Educating health professionals about the importance of family
caregivers and the critical need to recognize, support and advocate
on their behalf
Supporting legislation that broadens the provisions and decreases
the restrictions of the FMLA
Reviewing the provisions of national and state supported health
care benefits such as Medicare and Medicaid in the face of a
population with increasing chronic illnesses
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 8
Supporting legislation to offer tax credits and other creative
incentives to ease the financial burden of care given by family
Working to integrate health care and community support systems
so they become family-centered and maximize resources while
preventing duplication of services
Assuring the facilitation of education and allocation of resources for
children when there is family illness
Developing work place policies and programs that are flexible and
can meet the needs of family caregivers as well as employers
Supporting programs for re-entry into the work force of the family
caregiver when caregiving is over
Promoting structural modifications such as family bathrooms and
accessibility in public and private dwellings to reduce isolation and
increase opportunities for caregivers and their loved ones to
socially participate in as normal a lifestyle as possible
Using professional talents and resources to assure that legal and
financial documents are in order prior to a crises
Creating local Caring Resource Centers so caregivers know where
to turn for advice and support
Taking personal responsibility in long-term care planning for one‟s
own family unit
The Nation and Others are Responding
The Clinton administration took a first step toward the recognition of
caregivers and their provision of long-term care. After two long years in process,
in December 2000 the government passed a $125 million National Family
Caregiver Support Program (NFCSP) as an attachment to the Older Americans
Act. The Administration on Aging of the Federal Government is distributing the
allocation of this money through state Area Agencies on Aging. Compared with
the contributions caregivers make, it is a drop in the bucket; nevertheless, it is a
There are specific guidelines for spending the money. Some states have
insufficient data to make informed spending decisions for the funds.
Furthermore, there are age boundaries and specific population segments such
as grandparents and Native American care that challenge its distribution.
The Internet is continually creating various opportunities and pathways for
supporting family caregivers. There are now a myriad of Internet sites specifically
devoted to family caregivers. The Internet sites offer products, information,
advice, chats, electronic newsletters and resources. Some are interactive and
offer support groups. Others offer individual advice. Services may be free or fee
based. Examples of caregiver/caregiving web sites are:
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 9
A few Internet sites such as www.familycareamerica.com and
www.livingstrategies.com incorporate services of professionals, specifically
geriatric care managers and telephone support for family caregivers. Other web
sites such as www.aarp.org and www.thirdage.com have designated site areas
for caregiver and caregiving issues. Recently the American Medical
Association‟s web site posted a Caregiver Assessment. ( www.ama-assn.org )
There are entrepreneurial business ventures focused on caregivers. One
company, now a year old, is The Caregivers Advisory Panel (TCAP). TCAP
created a national panel of family caregivers who participate in caregiver
research. Their initial findings show that 96% of family caregivers are active
participants in the selection and the 79% in the purchase of health care products.
Public and private sectors are also responding to caregiver needs by
developing work/life programs and more respite care, including general adult day
care and day care for those with Parkinson‟s or Alzheimer‟s disease.
Caregiver conferences, forums and support groups are increasingly
prevalent. There is major growth (membership so far in 2001 has more than
doubled) in the NFCA that offers free membership and provides a discounted
prescription program and free caregiving advice from experienced advisors. Two
other national caregiver organizations, the Well Spouse Foundation and Children
of Aging Parents charge a membership fee. They are also growing in their
During the next several years, the Robert Wood Johnson Foundation is
awarding $100 million to create 2000 new community based volunteer programs
throughout the country. Some of these will provide vital family caregiver support
services through Faith in Action Programs. One such program is Boca Raton
Interfaith in Action (BRIA) in Boca Raton, Florida. This three-year old
organization provides volunteer support services to persons who are homebound
and family caregivers. BRIA is now developing and implementing a new
Comprehensive Family Caregiver Support Program, generously funded by the
Quantum Foundation, to improve the lives of family caregivers. Unique program
aspects include a caregiver assessment and care plan, spiritual respite and
student experience with Florida Atlantic University‟s Schools of Social Work and
If it takes a village to raise a child, what does it take to care for another,
especially an elder? A child is dependent with the benefit of parental financial/legal
responsibility and many community supports from public schools to recreational
programs. The transition back to dependency often occurs in the elderly and disabled
with no one financially and legally responsible and inadequate community support
systems for protection and care. However, a community can and should take collective
responsibility…should become a village. An excellent way to begin is by supporting
those who are family caregivers.
When no one is responsible, then are not all responsible?
©2001 C.T. Siskowski. All rights reserved.
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 10
1. Levine C., The Loneliness of the Long-term Caregiver. New England Journal of
Medicine, 1999; 340:1587-90.
2. NAC/AARP. Family Caregiving in the United States, National Alliance for Caregiving &
American Association of Retired Persons (NAC/AARP): 1997.
3. The Impact of Caregiving – Facts and Figures You Need to Know. Des Moines, IA:
Employee and Family Resources – EAP; 1999. Available at: www.efr.org/carefact.html.
Accessed June 1, 2001.
4. Feinburg LF. Options for Supporting Informal and Family Caregiving. San Francisco, CA:
American Society on Aging; 1997.
5. Arno PS, Levine C, Memmott M. The Economic Value of Informal Care. Health Affairs.
6. NFCA. Caregiver survey. July 2000 Available at: www.nfcacares.org. Accessed June 1,
7. Dupont Employee Study on Work/Life Initiative. Washington, DC: Employment Policy
8. Braus P, When the Helpers Need a Hand, American Demographics. 1998: 68.
9. Wagner DL. Caring Across the Miles: Findings of a Survey of Long-Distance Caregivers.
Washington, DC: The National Council on the Aging; 1997.
10. Levine C. About the Families and Health Care Project, New York, NY: United Hospital Fund
of New York: 1998.
11.Giogianni SJ. (1997 Fall), The Pfizer Journal, 1997:I (3);5.
12.US Dept. of Labor. Work and Elder Care: Facts for Caregivers and Their
Employers, Facts on Working Women (1998 May) Available at:
www.dol.gov/dol/wb/public/wb_pubs/elderc.htm. Accessed June 1, 2001.
13. AARP. In the Middle: A Report on Multicultural Boomers Coping with Family
and Aging Issues; 2001. Available at www.aarp.org/inthemiddle/. Accessed
July 18, 2001.
14. Ford C, Wagner D. Caregiving Across the Life Cycle. Deerfield Beach, FL:
National Family Caregivers Association/Fortis; 1998.
15. Schultz R, Beach SR. Caregiving as a risk factor for mortality. JAMA 1999;
16. The MetLife Study of Employer Costs for Working Caregivers, Westport, CT:
Metropolitan Life Insurance Company; 1997.
17. Goetzel RZ, Anderson DR, Whitmer RW, Ozminkowski RJ, Dunn RL,
Wasserman J. The relationship between modifiable health risks and health
Care expenditures. An analysis of the multi-employer HERO health risk and
Cost database. The Health Enhancement Research Organization (HERO)
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 11
Research Committee. Journal of Occupational Environmental Medicine,
1998; 40: 843-54.
18. The MetLife Juggling Act Study. New York, NY: Metropolitan Life Insurance
19. Corporate Culture Significantly Impacts Employee Use of Work/Life Benefits
Despite Significant Toll of Caregiving on Employee Stress and Job.
Burlington, MA: Intracorp; 1998.
20. Ford C. The Family Medical Leave Act. Today’s Caregiver. 1998;Sept/Oct:23.
21. Work and Family. Futurework: Trends and Challenges for Work in the 21
Century. Washington, DC: Dept. of Labor; 1999: chap 3. Available at:
www.dol.gov/dol/asp/public/futurework/report.htm. Accessed June 1, 2001.
22. Covinsky KE, Goldman L, Cook F, et. Al. The Impact of Serious Illness on
Patients‟ Families. JAMA. 1994; 272: 1839-1844.
23. Stephens MAP, Aloen T. Stress of Parent Care: Positive and Negative
Effects of Women‟s Other Roles. Psychology of Aging. 1997; 12; 376-386.
24. Selected Findings from Caregiving in the U.S.: Needs, Issues and Insights –
2001 Edition. Charlestown, RI.
Available at: www.caregiversadvisorypanel.com/manufacture.htm. Accessed
July 17, 2001.
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 12
For copies of some of the reports referenced, contact:
Caregiving in the US
National Alliance for Caregiving
4720 Montgomery Lane
Bethesda, MD 20814
The Economic Value of Informal Caregiving
United Hospital Fund of New York
350 Fifth Avenue – Empire State Bldg.
New York, New York 10118
Informal Caregiving: Compassion in Action
US Dept of Health and Human Services
Office of the Assist Secretary for Planning and Evaluation
200 Independence Avenue SW
Washington, DC 20201
NFCA Survey 2000
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
301- 942 6430 / 800-896-3650
©2001 C.T. Siskowski. All rights reserved.
Connie Ford Siskowski, RN, MPA Courtesy of BRIA 2001 13