What is an “Adult Caregiver”?
An Adult Caregiver refers to an adult who provides assistance
to anyone who is physically or cognitively impaired. This
assistance can vary by circumstance and includes anything
from helping with bathing and personal hygiene tasks to
running errands or grocery shopping. Whether someone
actually provides such assistance themselves, or coordinates
the services of others who provide the assistance, they are
considered an Adult Caregiver.
Examples of Adult Caregiving include No matter which of these caregiving
caring for a spouse who has suffered situations you may be in, you should
from a physically-limiting event or understand that you are not alone
situation, such as arthritis, a stroke or a — millions of Americans are Adult
heart attack. It can also entail caring for Caregivers. If you are feeling
a parent or other loved one with a physically or emotionally overwhelmed,
cognitively limiting condition such this is a very normal reaction and there
as Alzheimer’s Disease or for a child with is help available.
traumatic brain injury from a car accident.
The guide that follows is a good starting
Informal caregiver and family caregiver are point when gathering advice and resources
terms that refer to unpaid individuals such for Adult Caregiving.
as family members, friends and neighbors
who provide care. These individuals may
live with the person being cared for or live
YOU ARE NOT ALONE AS AN
across the country. Formal caregivers are
volunteers or paid care providers
associated with an organization such as The National Family Caregiver
a home care agency. Association estimates that
1 in 4 adults provide care to
The Growing Impact
of Adult Caregiving
A woman writes: “My
mother lives more than
150 miles away. She is
growing frail, and we worry
about her a lot. She will not
consider moving closer to
us, she wants to stay in her
house of 60 years, and we THE GROWTH IN
don’t blame her…we are
really feeling a heavy weight The convergence of three
demographic trends explains this
of responsibility. We are at growth in elderly caregiving:
a loss in knowing how to 1. The Baby Boomers are
approach this whole issue.” aging, and their parents are
Her situation communicates the essence of 2. Women – the traditional
caregivers – are in the
why Adult Caregiving has become such an
workplace and not available
important consideration in today’s society. to provide daily care.
The segment of Adult Caregivers that is
3. Our mobile society has left
growing most rapidly today is comprised families separated, sometimes
of those who provide care to the elderly. by thousands of miles.
How Prevalent is the
Adult Caregiving Issue?
Statistically Speaking: Economic Effects:
• The strain of providing care for an • If the services provided by informal
elderly loved one is an everyday reality caregivers (i.e. family, friends, neighbors)
for an estimated 25 percent of had to be replaced with paid services, it
American families. Again, if you are would cost an estimated $257 billion.
an Adult Caregiver, you are not alone. • A recent study found that the
• 52 million informal and family cost to U.S. business due to lost
caregivers provide care to someone productivity of working Adult
aged 20+ who is ill or disabled. Caregivers (absenteeism, workday
• 34 million adults (16% of population) interruptions, early retirement, etc)
provide care to adults 50+ years. ranges from $17.1 billion to $33.6
billion per year. It’s not just the Adult
• Unpaid family caregivers are estimated
Caregiver who is affected by their
to reach 37 million caregivers by 2050,
caregiving responsibilities, but their
an increase of 85% from 2000.
employers, supervisors, co-workers,
and colleagues as well.
• As a result of their caregiving, informal
caregivers are estimated to each lose
• Studies consistently report higher levels an average of $25,494 in Social
of depressive symptoms (20% to 50% Security beneﬁts, an average of
of Adult Caregivers) and mental health $67,202 in pension beneﬁts and an
problems among caregivers than among average of $566,433 in wage wealth.
their non-caregiving peers. In short, it
• Long-distance caregivers spend an
is normal to feel overwhelmed by Adult
average of $392/month on travel and
out-of-pocket expenses as part of their
• Several studies have shown that caregiving duties.
caregivers use prescription and
psychotropic drugs more than
Advice for Adult Caregivers
Adult Caregivers should have a plan in place to avoid the
pitfalls and burnout that are common to people in this
position. Many informal caregivers tend to ignore or put
aside their own needs, which can be detrimental to
themselves and the individual for whom they are caregiving.
Tips to Avoid What are some warning
Caregiver Burnout signs that my loved
• A few hours per week of ‘down time’ one’s caregiving needs
can make a world of difference. See a are changing?
counselor or make a point of scheduling • Changing relationships with others/
time out of the house with a friend. withdrawal from social interactions.
• Monitor your health. Stress and • Unusual behavior, such as being overly
inadequate sleep can take a negative quiet, loud or agitated.
toll on an Adult Caregiver’s physical
• Neglecting personal care, including
and mental well-being.
hygiene and nutrition.
• Stay connected to others. Providing
• Signs of forgetfulness such as piles
care for someone can lead to a sense
of newspapers, unopened mail and
• Attend caregiver support
• Mismanaging ﬁnances, not paying bills
or making unusual purchases.
• Not keeping up with household chores.
» Plan ahead to take
action when warning
What can Adult
Caregivers do when
warning signs appear?
» Caregivers should
attend to their • Do not be afraid to seek or accept
own needs. assistance. There are many free or
economical public and private services
Avoid for Adult Caregivers seeking a respite
from providing continuous care.
Burnout • Talk with your loved one to ﬁnd out
what they need and what will accept.
• During your visits, watch for
warning signs of declining abilities,
Warning such as changes in grooming, eating,
or social activities.
Signs • If you notice what appears to be a
» Watch for warning decline in thinking and reasoning, you
signs that your might want to ask a physician to “test”
loved one’s needs your loved one for cognitive function.
are changing. • Buy a workbook to organize
information. Keep track of your
loved one’s medical condition and
prescription drug information.
• Establish a network of support (friends,
relatives, neighbors, and physicians),
and keep in touch.
Resources and Options
Available to Adult Caregivers
Making the choice to provide informal care is a brave and
difﬁcult decision for many American families, but they
don’t have to go it alone. There are ample resources available
in many communities to guide and assist these families who
undertake the task of providing care to an elderly or
If I want to care for my loved one in the home, what are
First of all, it’s important to know what However, many other ﬁnancial vehicles
ﬁnancial resources may be available to pay are available that will pay for ongoing
for those services that Informal Family caregiving services:
Caregivers usually provide. Medicare, • Long-Term Care Insurance
Medicaid and most employer-sponsored
• Worker’s Compensation and
HMO and PPO plans reimburse only
Catastrophic Auto Insurance policies.
for intermittent visits from a home care
nurse on a temporary basis, when a • Reverse Mortgage Funds
patient has a speciﬁc qualifying medical • Employer Sponsored Health Savings
diagnosis. In general, these types of Accounts or Flexible Spending Accounts.
insurance are not designed to pay for • Employer-Sponsored caregiving stipends
ongoing, hourly caregiving services that – such as “Back-Up Care” programs for
are classiﬁed as “Long-Term Care.” Use employees who are Adult Caregivers and
the Ofﬁcial Medicare Eligibility Tool at travel for work
• Family Trust Funds
Medicare.asp to learn more.
• State-subsidized Home and
Community Based Services (“Medicaid
Waiver”) programs. Age and income
qualiﬁcations do apply
Another option is hiring additional paid
help to supplement caregiving needs. A
paid caregiver can be hired to work in
whatever setting a care recipient may
Caregiver Tip: Adult day care
call home: their own private residence, centers provide daytime respite
a senior retirement community, a group services for working Adult
home, or a rehabilitation facility. Caregivers during weekdays.
Hiring a private in-home caregiver is one
possibility. A trusted family member,
friend or neighbor may be a cost-effective
option. Bear in mind that you are
assuming employer responsibilities when
hiring privately, and most homeowners
insurance policies exclude injury to
Many Adult Caregivers engage the
services of a private duty home care
agency to provide services to a loved-one
when more services are needed than a
privately-hired caregiver can be expected
to provide. Home care agencies should
be willing to provide proof of background
checks, any required licensing, bonded
and insured caregiving staff, formal
training programs for staff, and 24-hour
emergency scheduling services. The
National Private Duty Association is
a good source of home care agency
Finally, adult day care centers provide
daytime respite services for working Adult
Caregivers during weekdays.
Seven Important Questions
to Ask When Hiring Paid Help
Answering these questions may be less of a priority if a
trusted friend or family member is available. If this option is
not available, as is the case for millions of Adult Caregivers,
it is important for the family to ask these questions.
1. If the hired caregiver becomes ill or 5. Are criminal history background
otherwise unavailable, what alternate checks, state abuse registries
arrangements can be made? checks and prior work reference
2. Are social security, federal and checks completed?
state taxes, and unemployment 6. Is there bonding and insurance in
insurance paid so the family is not place that would cover any injury to
legally responsible? the client or theft?
3. Do we have veriﬁcation that the paid 7. Assuming family is not available to
caregivers can legally work in the U.S.? supervise paid caregivers at all times,
4. If the hired caregiver is injured, who will there be documentation that
is responsible? Remember that many substantiates the completion of services?
homeowner’s insurance policies
exclude such injuries via “domestic
Caregiver Tip: If the Adult
Caregiver does not have the
time and/or resources available
to answer these important
questions, the services of a
professional home care agency
or adult day care center — who
should take responsibility for
the items above as part of their
fee — may be the right solution.
Orienting Your Paid Caregivers
Whether you hire a private caregiver, a Also, show the home care worker:
home care agency or an adult day care • Likes and dislikes of the care recipient
center, letting them see what a typical
• Dietary needs
day in the life of your loved-one is like is
helpful-not only for the caregiver, but for • Mobility issues
the recipient of that care. Everyone will • Medications: dosage and how to order
be more comfortable and it will make • How to deal with individual behavior/
adjusting to someone in the house easier. emotional problems
It’s probably best to put things in writing, And remember, ask lots of questions of
but also take the time to spend the day the caregiver/agency in order to assure
and go through the routine. Acquaint the everyone is clear!
workers with who to contact in the case
of an emergency, where supplies are
(medical, clothing, cooking, cleaning),
where the appliances are and how to use
them, and keys and alarm systems.
Powers of Attorney
Making Health Care and Financial Decisions
in Accordance with a Client’s Choices
Powers of attorney are a good planning tool to create a way
for an Adult Caregiver to act on behalf of another during
a period of incapacity or, in the management of ﬁnances,
whenever an individual might ﬁnd it convenient to delegate
While terms and formats differ somewhat
from one state to another, there are
typically two types of powers of attorney,
one for the management of ﬁnances, and
one for the management of health care.
A Health Care Power Further, a health care power of attorney
of Attorney may state an individual’s instructions
Health care power of attorney becomes regarding life support issues (CPR,
active only when an individual is so ill that ventilators or respirators and tube or
he or she cannot make or communicate intravenous feedings and hydration) if he
a health care decision to his or her or she becomes terminally ill. More than
physicians. For example, if Mr. Jones is in one agent can be named, typically giv-
a coma, or if he develops dementia, which ing an order in which the agents are to be
impairs his understanding and judgment, contacted. For example, Mr. Jones might
the agent nominated by Mr. Jones in his make his son who lives in town his pri-
health care power of attorney has the mary health care agent, but could name
authority to make health care decisions for his out-of-state daughter as a second agent
Mr. Jones. should physicians be unable to locate the
son in an emergency.
Do not assume that family members
automatically have the right to make A Financial Power
these types of decisions. Most state laws of Attorney
are quite vague on who is permitted to Financial power of attorney allows an
make medical decisions for another; a individual to nominate one or more
valid power of attorney clariﬁes the trusted individuals who can manage
decision-maker for physicians. legal or ﬁnancial matters. The powers
are typically active once the power of
attorney is executed, so the individual
and agent both have access to the
individual’s ﬁnances. They share
authority to manage the ﬁnances, but
they do not share ownership of the
assets. Financial powers of attorney may
Caregiver Tip: To learn use simple state-approved “short forms”
more about powers of
or may state in lengthy text the exact
attorney, contact an elder
law attorney in your area powers being granted; both types have
through the National their purposes.
Academy of Elder Law
to discuss your needs
Several simple steps will help families make educated
decisions when Adult Caregiving needs arise:
1. Arrange a meeting for all involved 3. Check with your employer’s human
family and loved ones to discuss options. resources department and/or employee
Be sure to include the wishes of the care assistance program. A recent report from
recipient. Discussion items may include the Society for Human Resource
matching the appropriate caregiver, Management indicates that about 1 in 4
daily routines health, nutritional and companies offer basic elder care provisions
medication requirements as well as house to employees, such as referrals to caregivers
cleaning and transportation needs. The or legal services. About 1 in 11 companies
Adult Caregiver’s Needs Assessment offer more elder care services, including
Worksheet included with this Show Me ﬁnancial assistance with in-home care and
Guide is a helpful tool when determining extended leaves for emergencies. And don’t
these needs. forget to check with your spouse/partner’s
employer as well!
2. Gather local community resources, via
the Internet or local phone books, such as 4. Reach out for support in a caregiver
home care agencies, transportation support group or online bulletin board or
services and community senior centers. “buddy” system.
The attached list of resource links is a
good starting point. 5. If you decide to retain the services of a
home care agency or professional geriatric
care manager, ask them to develop a
customized “plan of care” that outlines
physical needs, cognitive needs, and goals.
Frequently Asked Questions
Are the caregivers I hire bonded Ask about training, screening and
& insured? selection systems used to determine the
This should be a standard with any best match between a paid caregiver and
professional home care agency, inclusive the recipient of care.
of criminal history background
clearances on each paid caregiver, Will the same caregiver come
general liability insurance and worker’s each day/shift?
compensation insurance. Yes. Developing strong rapport and trust
between the family, care recipient and
Will I have a choice of who comes your paid caregiver is a vital component to
to my home? a successful caregiving experience.
Within reason, the family should always
have a say in choosing the paid caregivers.
Frequently Asked Questions
If I change my mind, do I have to How can I verify a shift was
keep the service? completed for a family member?
You should never be locked into a Written time cards are often utilized,
long-term pre-paid contract. Professional allowing family or the client to verify
caregiving organizations typically collect services on a daily or weekly basis. A few
refundable security deposits equivalent of the more progressive professional home
to 1-2 weeks of projected service fees, care agencies combine written time cards
rather than asking for pre-payment of with a newer technology called Telephony.
services – no different that the security Telephony is a Web-based time and
deposits collected when one moved into attendance solution, which veriﬁes arrival
an apartment. and departure times of paid caregivers
via real-time electronic signals that are
Do I pay the caregiver directly? activated by toll free calls made by the
If hiring a paid caregiver privately, or caregiver from the client’s home phone.
through a registry service, you should
assume that you will be responsible for How is the privacy of my personal
standard employer obligations – information maintained?
including paying the caregiver(s). Services If you are working with a professional
via professional home care agencies caregiving organization, you should ask for
utilize an employment model, meaning written assurance that your personal health
they should invoice you for services care information will never be shared with
anyone in their organization besides those
directly involved in your loved one’s care,
and never sold to any 3rd party or afﬁliate
Caregiver Tip: Telephony
under any circumstances.
is a Web-based time and
attendance solution, which
veriﬁes arrival and departure
times of paid caregivers via
real-time electronic signals that
are activated by toll free calls
made by the caregiver from
the client’s home phone.
Do I need a physician’s Many services also utilize formally-trained
authorization/prescription? certiﬁed nursing assistants, home health
Unless services are being reimbursed by aides and personal care assistants to
Medicare, Medicaid or a private insurer, provide “hands-on personal care services”
there typically is no pre-authorization, such as:
certiﬁcation, pre-qualiﬁcation, or • Bathing and hygiene
doctor’s prescription required. You start
• Toileting and urinary/bowel
the services when you want, and you
decide how much or how little home care
service you would like. If reimbursement • Physical transferring from bed to
from your insurance company is involved, wheelchair, wheelchair to toilet, etc.
ask any professional caregiving • Feeding
organization if they will assist with the
often time-consuming, but necessary, Some services will also provide skilled
billing process. nursing services, performed by Registered
Nurses and Licensed Practical Nurses,
What services are provided? such as:
Virtually all paid caregiving services • Wound care and sterile
provide “companion level” services to bandage changes
assist with daily living activities such as:
• Medication administration
• Preparing meals
• Feeding tube assistance
• Medication reminders
• Light exercise
• Shopping and errands
• Maintaining household cleanliness
• Companionship and safety supervision
Adult Caregiving Resource Links
Caregiving Education Family Caregiver Alliance
and Resources Committed to caring for caregivers,
Caring News www.caregiver.org
Information, advice and support for adult
caregiving. Includes articles and resources Hospice Association of America
to assist family caregivers and health care A national organization representing more
professionals who desire information than 2,800 hospices and thousands of
about home care services. caregivers and volunteers who serve
www.caringnews.com terminally ill patients and their families.
Direct Care Alliance
A national, practitioner-based coalition National Academy of Elder
of long-term care consumers, direct-care Law Attorneys
workers, and concerned health care Provides information, education,
providers who have come together to networking and assistance to those who
pursue a common goal: broad-based deal with the many specialized issues
reforms to ensure a stable, valued and involved with elderly care legal services
well-trained direct-care workforce that can and people with special needs.
meet consumers’ demands for high-quality www.naela.com
paraprofessional health care services.
www.directcarealliance.org National Area Agencies on Aging
The National Association of Area
Eldercare Locator Agencies on Aging (n4a) is the umbrella
A public service of the U.S. Administration organization for the 655 area agencies on
on Aging. The Eldercare Locator connects aging (AAAs) and more than 230 Title
older Americans and their caregivers with VI Native American aging programs in
sources of information on senior the U.S. The fundamental mission is to
care services. provide services which make it possible for
www.eldercare.gov/Eldercare/Public/Home.asp older individuals to remain in their home.
National Association of National Private Duty Association
Professional Geriatric The National Private Duty Association
Care Managers (NPDA) is a non-proﬁt national voice for
A national network of organizations and organizations that provide private duty
individuals dedicated to improving the home care services and an advocate for
health and independence of older persons; services which beneﬁt the consumers for
increasing their continuing contributions whom they care: seniors, children, persons
to communities, society and future gener- with disabilities, those with chronic health
ations; and building caring communities. conditions, and anyone whose quality
www.caremanager.org of life can be improved by having a care
worker help in their home.
National Clearinghouse on the www.privatedutyhomecare.org
Direct Care Workforce
Provides reliable up-to-date information ThirdAge
for people who are working to improve Legal, insurance, ﬁnancial, and housing
direct caregiving jobs. resources for senior care.
National Family Disease-Speciﬁc Information
Supports, empowers, educates, and Alzheimer’s Association
speaks up for the more than 50 million A national network of chapters, is the
Americans who care for a chronically ill, largest national voluntary health
aged or disabled loved one. NFCA organization committed to ﬁnding a cure
reaches across the boundaries of for Alzheimer’s and helping those affected
different diagnoses, different relationships by the disease.
and different life stages to address the www.alz.org
common needs and concerns of all
family caregivers. American Association for
www.nfcacares.org Respiratory Care
AARC is the only professional society for
National Guardianship respiratory therapists in hospitals and
Association with home care companies, managers of
Promoting a nationally recognized respiratory and cardiopulmonary services,
standard of excellence in guardianship. and educators who provide respiratory
www.guardianship.org care training.
Adult Caregiving Resource Links
Disease-Speciﬁc American Lung Association
Information (continued) Founded in 1904 to ﬁght tuberculosis, the
American Lung Association® today ﬁghts
American Cancer Society lung disease in all its forms, with special
The American Cancer Society is the emphasis on asthma, tobacco control and
nationwide community-based voluntary environmental health.
health organization dedicated to www.lungusa.org
eliminating cancer as a major health
problem by preventing cancer, saving American Stroke Association
lives, and diminishing suffering from The division of the American Heart
cancer, through research, education, Association that’s solely focused on
advocacy, and service. reducing disability and death from stroke
www.cancer.org through research, education, fundraising
American Diabetes Association www.strokeassociation.org
The American Diabetes Association is
the nation’s leading non-proﬁt health National Parkinson Foundation
organization providing diabetes research, Educational site on Parkinson’s disease.
information and advocacy. www.parkinson.org
Senior Health and
American Heart Association Aging Information
The American Heart Association is a
national voluntary health agency whose Administration on Aging
mission is to reduce disability and death Learn more about the Older Americans
from cardiovascular diseases and stroke. Act, the federal legislation establishing the
www.americanheart.org AoA and authorizing a range of programs
that offer services and opportunities for
older Americans and their caregivers.
American Society on Aging National Council on Aging
Our resources, publications and educational National Council on Aging (NCOA)
opportunities are geared to enhance the is dedicated to improving the health
knowledge and skills of people working with and independence of older persons
older adults and their families. and increasing their continuing
www.asaging.org contributions to communities, society,
and future generations.
CMS-Centers for Medicare & www.ncoa.org
US Dept of Health and Human Services National Organization on Disability
Web site – includes resources for Medicare The mission of the National Organization
and Medicaid programs. on Disability (N.O.D.) is to expand the
www.cms.hhs.gov participation and contribution of America’s
54 million men, women and children with
FirstGov disabilities in all aspects of life. By raising
Ofﬁcial US Government Web site. Laws, disability awareness through programs and
regulations and legislation related to senior information, together we can work toward
care issues. closing the participation gaps.
Kaiser Foundation National Policy & Resource Center
The Henry J. Kaiser Family Foundation is on Nutrition & Aging
a non-proﬁt, private operating foundation National Resource Center on nutrition,
focusing on the major health care issues physical activity and aging.
facing the nation. nutritionandaging.ﬁu.edu
The Center for Social Gerontology
Medicare A non-proﬁt research, training and social
Ofﬁcial US Government Web site for people policy organization dedicated to promoting
with Medicare. the individual autonomy of older persons
www.medicare.gov and advancing their well-being in society.
National Alliance for
Hispanic Health United We Ride
To improve the health and well being of Coordinates transportation resources for
Hispanics. The National Alliance for seniors and the disabled.
Hispanic Health is the premier organization www.unitedweride.gov
focusing on Hispanic health.
An Adult Caregiver’s
Home Safety Checklist
No loose carpeting or rugs that do not have a non-slip backing.
Trafﬁc areas free of furniture.
Electrical cords and other wires taped against walls.
Bright lighting with switches and all light bulbs in working order.
Telephones placed on tables at a height that can be reached from the ﬂoor.
Stairs and Inclines:
Free of items placed on the steps.
Plenty of room to move at top and bottom of stairs.
No loose carpeting or edges to catch on.
Handrails securely attached and at the proper height for user.
Proper lighting on all steps, including switches at top and bottom of stairs.
Grab bars near the tub, shower and toilet located and mounted properly.
Non-slip surfaces in the tub or shower.
Nightlight for when ﬁrst entering the room.
Rugs or bathmats with non-slip backing on the ﬂoor.
Shower/tub bench or seat.
Bedside table with non-tip lamp and room for eyeglasses.
Clear trafﬁc area from bedroom to bathroom.
Comfortable, sturdy chair to aid in dressing.
Items placed where they can be reached without the use of a stool.
Area to sit during food preparation.
Flooring free of cracks, splits or up-turned edges.
Someone checking on the individual daily.
Schedule vision check.
Discuss medications with physician to determine affects on balance.
Establish light exercise routine.
An Adult Caregiver’s
Worksheet This worksheet will help
you and other family
members determine what
types of assistance your
loved one needs.
Activities Of Daily Living (ADLs)
Activity Accomplishes alone Needs some help Needs much help
Eating a nutritious diet
Getting out of bed
Getting out of chair
Instrumental Activities Of Daily Living (IADLs)
Activity Accomplishes alone Needs some help Needs much help
Using the telephone
Shopping for personal items
Doing light housework
How do the following affect the person’s ability to function?
Limitation No effect Some effect Major effect
Bladder or bowel control
An Adult Caregiver’s
Needs Assessment Worksheet
Which barriers can be removed or changed?
Neighborhood: Limitation No Problem Needs to be changed
Friends or relatives nearby
Age of dwelling
Roof in good repair
Windows in good repair
Siding in good condition
Looks cared for
Security and safety
Dead bolt locks on outside doors
Peephole in front door
Window bars or locks
Visible from road
(no large trees or bushes block view)
Smoke alarms installed, tested
Passageways clear of
wires and clutter
Free of obstacles and clutter
Handrails on both sides
In good repair and nonskid
Floors: Limitation No Problem Needs to be changed
Nonskid level surfaces
No loose rugs
Couch and chairs easy to use
Tables the right height
Bed easy to get in and out of
Light switches easy to reach
Entries and walkways well-lit
Reading areas well-lit
Light diffused from windows
and surfaces (no glare)
Passageways have night lights
Lever handles on sink
Clean rubber mat by the sink
Items used often are accessible
Storage is easy to get to
No objects are over the stove
Grab bars attached to studs,
by the toilet and tub or shower
Nonskid strips in the tub or shower
Hand-held shower head
Nonslip bath mat or rug
Reproduced with permission from FamilyCare America, Inc