Caregiving for the Elderly
One
of the most dramatic successes of modern life has been the increase in life
expectancy. With profound decreases in child and adult mortality, most people
can expect to grow old. For the majority, the “golden years” are just that — a
time during which they can enjoy the fruits of their lifetime labors. However,
a substantial minority of older people develop chronic illnesses and
disabilities, for which they require regular assistance.
What is Caregiving?
Caregiving,
simply, is the regular provision of care to someone. The nature of care depends
on the specific needs of the recipient. A frail older person, for example, may
need help with household tasks such as
cleaning, preparing meals, and arranging medical services or transportation.
Those who are more disabled may need assistance with daily living activities
such as dressing, bathing or toileting. Older people with memory deficits due
to Alzheimer’s disease or similar disorders require help with thought-related
tasks: making decisions, managing money, and getting from place to place. Older
people receiving care also have emotional needs as a natural consequence of chronic disability;
they may become fearful, depressed or angry. At times, they may take these
feelings out on the people closest to them — their caregivers.
Who are Caregivers?
It
has been estimated that between 5.8 - 7 million people
in the country provide regular assistance to a frail older person. Family
caregivers are a varied group. Many are husbands or wives of the older person and are,
themselves, often limited in the activities they can perform. Another large
group of caregivers are the children of older people, particularly daughters
and daughters-in-law, and, on occasion, sons. Caregivers also include other
relatives — sisters and brothers, nieces, nephews, cousins and grandchildren —
as well as friends and acquaintances. As a whole, family members traditionally
have provided about 80% of homecare
for the impaired elderly. Involvement in assisting the frail elderly can range
from a few minutes a day to around-the-clock care.
In
most families, one person becomes the primary caregiver, usually the individual
who has the most responsibility for organizing and providing assistance to the
care recipient. Primary caregivers usually bear more of the burden of providing care, but they also have
the greatest say over how things are done.
Secondary
caregivers are other relatives or friends who lend, or who could potentially
lend, additional assistance.
Stresses and Rewards of Caregiving
While
families have always helped their elders, both the number of people needing
assistance and the amount of help they require is unprecedented. As a
consequence, the demands and stresses of caregiving
can become difficult to manage and, on occasion, may become overwhelming.
Caregiving
is a job, with tasks, responsibilities and the potential for stresses and
rewards. Caregivers can function best at their jobs if they can prepare by
learning about their
relative’s condition and about the strategies for care and care
alternatives available to them. Professionals working with family caregivers
can help them experience the positive opportunities caregiving
offers, fulfilling a sense of obligation and returning the affection and caring
they may have received over the years.
Like
any other stressful situation, caregiving can have
adverse consequences for the caregiver’s own physical or emotional health. The
physical demands on caregivers can exacerbate health problems or make them
vulnerable to new illnesses and problems. The emotional demands of caregiving can be considerable, resulting in feelings of
sadness, depression, anxiety or anger. Research has found that as many as 40% of caregivers
experience significant symptoms of depression. Anger is another common emotion,
whether resulting from the care recipient’s behavior, the absence of a
relative’s help, or the feeling of entrapment in the situation. Decreased
social activity and impaired functional status are frequently reported.
It
is useful to distinguish between direct effects and ripple effects when
considering caregiver stresses. Direct effects are the stresses
resulting from providing assistance directly to the older person. Care tasks
such as bathing or dressing may be physically difficult for the caretaker to
perform, and the amount of care needed may be exhausting or time consuming.
Furthermore, care can be emotionally draining, particularly when the recipient
is emotionally upset or difficult to manage due to memory loss. Ripple effects,
on the other hand, are the consequences of caregiving
on other parts of the caregiver’s life. Caregivers may feel torn between responsibilities to the care
recipient and to other family members; they may have to relinquish retirement
plans, work, friendships, or other personal interests or activities. For many
people, these ripple effects are more difficult and stressful than their actual
care activities.
While
any caregiving situation can be stressful, particular
groups of caregivers have special concerns. Only children, for example, often
must assume alone all the responsibilities for their parents. Another group
includes caregivers who must balance employment with caregiving,
coping with competing demands from work, caregiving
and their other
family and social obligations, often
without the time and energy to meet all of these responsibilities. Husbands or
wives in a second marriage must confront the potential for misunderstandings
between step-parents and step-children about financial arrangements and care
provision. Finally, another special group of caregivers are those individuals
who, in addition to aiding an older relative, are also caring for another
disabled family member.
However,
not everything associated with caregiving is
stressful. Many caregivers gain a sense of satisfaction from a job well done,
or because they are fulfilling their duty or obligation to the care recipient.
Support and encouragement from other people can also buffer the caregiver from
stress. Research has shown repeatedly that receiving emotional support from
family and friends provides an important buffer against the stress and burden
of caregiving. It is the social contact, more than
any tangible care they may provide that is important. Sharing information about
the patient’s condition and the disease can help to bring family more into
play. Use of professionals (physicians, nurses, clergy)
to draw the family into more supportive positions can be effective.
Finally,
an important part of being a good caregiver is taking care of one’s self.
Although many caregivers have described themselves as feeling both physically
and emotionally better as the result of successfully managing caregiving challenges, many also feel overwhelmed. Feelings
of emotional distress or physical symptoms should be viewed as signals that
caregivers need to take better care of themselves.
This will benefit caregiver and care recipient alike.
Getting help
Various
sources of information exist to help families learn more about their relative’s
condition and about different ways of providing care. With this information,
families can be better prepared for the everyday issues they confront, as well
as for the stresses that lie ahead. At least several kinds of help are useful
for families taking care of their chronically ill relatives: information,
support groups, counseling, legal and financial planning, and service programs.
Information
Many
books about caregiving or care of people with
specific disabilities such as Alzheimer’s disease and other dementing
illnesses have been written in recent years, and can be found in bookstores and
public libraries. National associations for particular diseases or their local
chapters are also good sources of information. The blue pages of the telephone
directory can help families get in contact with these organizations. Primary
care physicians and nurses are also an important information resource.
Support Groups
Support
groups are another good resource for caregivers. In these groups, families
share with one another the information they have found useful in caring for
their loved one and provide comfort by sharing experiences and solutions to
specific problems. Support groups may focus on a specific disease, or on the
general issue of caregiving; they may be run by
professionals or paraprofessionals.
Counseling
For
some caregivers, counseling from a trained mental health professional
knowledgeable about issues of aging can be very useful. Counseling is
particularly helpful for caregivers who find themselves under a lot of stress,
or who feel they need some time to sort out the directions they want to go. The
counselor may want to invite other family members to counseling sessions or to
hold a family meeting as a way of increasing mutual understanding of the
situation, leading to a plan in which everyone pitches in to provide some help.
Legal and Financial Planning
Another
important step for caregivers is to learn about the legal and financial aspects
of their situation. Families need to consider how they can meet the costs of
long-term care without becoming impoverished. If the care recipient has a dementing illness and is likely to become incompetent,
legal steps will need to be taken to authorize someone else to make that
person’s financial and health care decisions. Information about legal and
financial issues of care may be available through support groups, or through
legal services, attorneys and financial planners.
Service Programs
A
very important part of getting help is to identify programs which provide
assistance in caring for the older person. Day centers, an important
resource, are now available in many communities, and help both the caregiver
and care recipient. Day centers help the caregiver by taking care of the older
person during the day and help the participant by providing stimulating
activity and an opportunity to interact with others.
A good day center program can play an important role in maintaining the
functioning and well-being of older, disabled individuals.
In
respite care a nurse’s aide or other trained person provides help in the
older person’s home, relieving the caregiver for a period of time or assisting
with specific activities, such as dressing or bathing. Overnight respite care
is offered in some communities; for example, a hospital or nursing home may
take the older person for a designated period of time to give the primary
caregiver a break. Home health care is available to meet specific needs,
including skilled care, personal care and homemaker chore care.
While
families may be reluctant to consider institutional care, it may become
necessary if the care needs of the older person become too great for the family
to manage. For caregivers assisting a seriously disabled person, especially
when the person’s condition is deteriorating, it is important to give
consideration to long-term care, including residential and nursing home care.
The decision to place a person in a 24-hour care facility is one of the most
difficult faced by caregivers, but when the demands being placed upon them
become more than they can handle, it may be time to consider placement. As with
most difficult decisions, it is better to investigate options and make plans
before a crisis point is reached, for in some areas, care facilities will have
long waiting lists.
For
more information about the types of services available in a particular
community, contact local support groups, area agencies on aging or the blue
pages of the telephone directory.
Developed by Mental Disorders of the Aging Research Branch,
National Institute of Mental Health,