Rush Manual 7. Getting Outside Help

/Home/Caregiving and Alzheimer's/Caregiving Booklets and Pamphlets/Rush Manual for Caregivers

USING COMMUNITY RESOURCES

___
Community agencies
provide a wide range of
services such as home
care, adult day care,
respite care services,
counseling, financial
assistance, transportation,
and more.
___


At some point, most families look for help from outside sources.
It is important to understand the kinds of help available and how
to obtain it. Key sources of information include community
agencies, health care professionals, support group leaders and
other caregivers. Community agencies provide a wide range of
services such as home care, adult day care, respite care services,
counseling, financial assistance, transportation, and more.
Organizations such as the Alzheimer's Association, the Illinois
Department on Aging and the American Association of Retired
Persons can be helpful in providing information or services.
Many services are available for a fee and some are available at
reduced cost or without charge. Eligibility may be based on age,
place of residence, income or other factors. Health insurance
may contribute to the cost of some services.


Where to go for help

The Alzheimer's Association is a nonprofit organization with
chapters nationwide. Its national office is located in downtown
Chicago, while the local chapter is based in Skokie, Illinois. The
Alzheimer's Association was established to meet the following
goals:
* To provide support and services for those with Alzheimer's
disease and their families.
* To stimulate and fund research aimed at finding the cause
and cure for Alzheimer's disease.
* To advocate for legislation and public policy sensitive to the
needs of those effected by the disease.
* To increase public awareness and educate professionals and
family caregivers about the disease.

The Greater Illinois Chapter's services (described below)
provide help to families and professionals caring for those with
Alzheimer's. Information about other chapters can be obtained
by calling the National Alzheimer's Association in Chicago,
(312) 335-8700 or 1-800-272-3900.

* The Helpline :A telephone service that provides
information and referrals to diagnostic centers, research
programs, legal advisers and community resources such as
adult day care and respite programs. A trained volunteer will
respond to your call weekdays from 9 a.m. to 5 p.m., and an
answering service will take your message during the evening
and on weekends. The telephone number of the Greater
Illinois Chapter is (847) 933-1000.

* Support groups: Family support groups are made up of rela-
tives, friends and other caregivers of people with dementia.
In an atmosphere of support and encouragement, caregivers
help each other solve problems and learn about various
community resources. There are over 40 support groups in
convenient locations in the city of Chicago, suburbs and
outlying areas. Some groups are limited to spouses or adult
children. The groups usually meet once a month under the
guidance of trained leaders. There is no cost. For more infor-
mation about times and meeting places, call the local
chapter.

* Safe Return: Helps identify, locate and return those who
may wander away from home due to confusion. The program
provides an identity bracelet or necklace; clothing labels;
registration in a national database; a 24-hour toll-free 800
number to contact when a person is lost or found; and a local
response team to notify police departments and emergency
rooms. The cost is $40.00. Call the local chapter for details.

* Chapter newsletter: This quarterly publication offers practi-
cal information and caregiving strategies for families and
professionals, as well as up-to-date reports on research and
legislative activities.

* Speakers bureau :In addition to conferences and seminars,
the chapter maintains a speakers bureau which offers presen-
tations to both family caregivers and professionals.


Respite Services

___
"Respite care" is tem-
porary care of an impaired
person on behalf of a
caregiver. It allows the
caregiver an opportunity
to rest for a while.
___

Respite care refers to temporary care of an impaired person on
behalf of a caregiver. It allows the caregiver an opportunity to
rest for a while. Respite services can be provided in many differ-
ent settings, including the familiar surroundings of the
caregiver's home or at other locations in the community. Respite
care services are available from various agencies, usually on a fee-
for-service basis. In-home respite care consists of periodic
supervision of the person with dementia by a sitter, companion,
homemaker or home-health aide. Such people help the person
with dementia carry out their daily routine and ensure their
comfort and safety. The care may involve help with meals, toilet-
ing, bathing, exercise and recreation. The training and
experience of respite aides varies, so it is recommended that you
interview them first. It is best to employ someone who is knowl-
edgeable about Alzheimer's disease and is capable of managing
difficult behaviors. Above all, you will want to employ someone
who can communicate effectively and can create a positive envi-
ronment for the impaired person. The cost of this service ranges
from $10 to $18 per hour, but low-income people may qualify for
a state subsidy. In-home respite care is also available for a maxi-
mum of five days for Chicago residents who are receiving
in-home services through the Chicago Department on Aging or
the state-run Community Care Program. For information about
this in-home respite care, contact the Chicago Department on
Aging Information and Referral Center, (312) 744-4016.

Another option is to place the person with dementia in a
residential facility for a few days or weeks. The facility may be a
specialized unit of a nursing home or hospital or a private home
that has been approved for this purpose. Guest residents are
encouraged to participate in group activities and are given assis-
tance with personal care. Such 24-hour supervision enables
caregivers to take an extended break. This arrangement can also
be a "trial run" to see if the person with dementia might adjust to
living in a nursing home. The cost of this service averages $125
to $160 a day, depending on the facility and the level of care
required. The Area Agency on Aging has a listing of facilities
offering short-term institutional care in the Chicago area. Call
(312) 744-4016 for information.
At Hines Veterans Affairs Hospital in Maywood, Illinois,
inpatient respite care is offered to military veterans for up to four
weeks a year. Call (708) 343-7200 for information about this
service, which usually has a long waiting list. Many private nurs-
ing homes accommodate people on a short-term basis, with some
variation in costs and admission criteria.


Adult Day Care

Perhaps the most popular form of respite care, because of its
significant benefit to most participants, is adult day care. These
programs are available outside the home, but in a home-like
environment. Adult day care consists of a coordinated program
of social and health-related activities led by trained profession-
als. The programs are designed to maximize the strengths and
abilities of the impaired person through a variety of therapeutic
activities. As a general rule, adult day care may be useful when
one or more conditions are present:
* The person with dementia seems unable to provide a struc-
ture or routine for their daily activities.
* The individual is isolated or unable to interact comfortably
with family or friends.
* The person with memory loss cannot be safely left alone at
home.
* The caregiver works outside the home or needs a regular
break.

Transportation to and from the adult day care center is
often provided, within certain boundaries. A typical adult day
care center is open seven to 10 hours daily, Monday through
Friday. The cost averages $45 to $55 per day. Discounts may be
available for those who use the service frequently, and some
programs offer a sliding-fee scale. Help in paying for adult day
care for people with limited resources may be available through
the Illinois Department on Aging or the U.S. Department of
Veterans Affairs. Those seeking assistance from these sources
must meet specific eligibility requirements. For information
about the Illinois Community Care Program call 1-800-252-
8966. Eligibility through the U.S. Department of Veterans
Affairs can be determined by calling 1-800-827-1000.

Approaching the person about adult day care will depend
greatly on your comfort level as well as the person's ability to
understand the value and purpose of the program. It is often
helpful to discuss ways of handling this with the staff of the adult
day care program. When proposing adult day care to the person
with dementia, it is best to use a positive, calm and reassuring
manner. Brief and simple explanations are usually the most effec-
tive, such as: "It would be nice to meet some friendly people," or
"The doctor thinks it might be helpful."

There are many adult day care centers in and around the
Chicago metropolitan area. Some specialize in caring for people
with dementia. The Rush Alzheimer's Disease Center keeps a
current listing of all local programs. Call (312) 942-4463 for
details. Outside the Chicago area, information about local adult
day care centers is available through the Illinois Department on
Aging or your local Area Agency on Aging. The National
Council on Aging also maintains an extensive listing; call (202)
479-1200 for more information.


Geriatric Care Managers

Services of a geriatric care manager may be helpful when the
person with dementia has no local family member available for
support. Assessment normally includes a home visit and a
comprehensive evaluation of the person's social, medical and
health care needs. A geriatric care manager functions as an
advocate if the person's safety or well-being are at risk. A
geriatric care manager is a professional with a graduate degree in
social work, psychology, gerontology or nursing. The manager is
certified or licensed for independent practice in his or her profes-
sion. This person should be fully trained and experienced in the
assessment, coordination, monitoring and direct delivery of
services to the elderly.

Geriatric care managers work closely with trust officers,
physicians, attorneys and other specialists to coordinate, imple-
ment and monitor a plan of care appropriate to the person's
needs. This may include assistance with arranging for home care
or nursing home care. Services are provided for a fee, beginning
at about $70 per hour. The National Association of Professional
Geriatric Care Managers in Tucson, Arizona, (602) 881-8008,
provides names of private care managers throughout the country.


Counseling
___
Discussing one's private
concerns and feelings
with an experienced
professional in a confiden-
tial atmosphere may help
alleviate the stresses
associated with caregiv-
ing. Do not be afraid to
ask for this help.
___

Learning to live with and care for a person with dementia can be
a difficult task and often requires the support of others.
Sometimes that support is needed in the form of professional
guidance and counseling. Discussing one's private concerns and
feelings with an experienced professional in a confidential
atmosphere may help alleviate the stresses associated with care-
giving. Do not be afraid to ask for this help. Counseling is
available through family service agencies, community mental
health centers and therapists in private practice. When seeking a
counselor, it is advisable to check out credentials such as licen-
sure and accreditation through state regulatory departments and
professional organizations. The Rush Alzheimer's Disease Center
has a list of therapists in the Chicago area who have a knowledge
of Alzheimer's disease. To obtain this list call (312)942-4463.


Eldercare Locator

The Eldercare Locator is a resource for families who want infor-
mation about services for a relative who lives in another
community. The service will provide information about home
health care services, adult day care, senior center programs, elder
abuse prevention and other services. The number is 1-800-677-
1116.


UNDERSTANDING GOVERNMENT BENEFITS

The financial costs involved in caring for a person with
Alzheimer's disease is typically covered by the individual and
their families. However, federal and state governments may help
pay for certain health care and social services. The person you
care for may be entitled to receive the benefits of these programs.


The Illinois Department on Aging

This is the state agency responsible for planning and funding
services for older adults. Among the programs it funds is the
Community Care Program, which helps pay for adult day care
and homemaker services for people with limited financial
resources. Besides meeting the financial criteria, the person must
be 60 years or older and a resident of Illinois at the time of appli-
cation. This agency also is responsible for investigating suspected
cases of abuse, neglect and financial exploitation against persons
age 60 and older. For more information, call 1-800-252-8966.


The Illinois Department
of Human Services

This state agency offers in-home and adult day care services for
impaired people who are under 60 years old and with limited
financial resources. Call (312) 793-1533 for further information.


Medicare

The Medicare program is the federal health insurance program
for people age 65 and older. It provides hospital coverage for
acute health care needs (Part A) and medical coverage for other
health care services (Part B). People under 65 are eligible for
Medicare if they have been receiving Social Security disability
benefits for 24 months.

Medicare Part A:
* Pays most hospital costs after an annual deductible is met.
The amount of the deductible is adjusted periodically.
* Pays for brief stays in a skilled nursing care facility for certain
types of acute illnesses or conditions. Alzheimer's disease is
not one of these conditions.
* Pays for home health care services if the person is
homebound and has other conditions requiring services of a
licensed health care provider.
* Pays for hospice care for the terminally ill.

Medicare Part B:
* Pays 80 percent of approved charges for physician's services,
diagnostic tests, laboratory fees, X-rays, and durable medical
equipment such as wheelchairs, hospital beds and walkers.

Services that Medicare does not cover:
* Custodial care for people who need help with daily living
activities such as bathing, dressing, toileting, and walking.
* Respite care and adult day care.
* Medications and medical supplies such as incontinence pads.
* Most long-term care or care in a nursing home.

Qualified Medicare Beneficiary Program
Additional financial help is available to people with low
incomes through the Qualified Medicare Beneficiary Program.
Only those covered by Medicare can qualify. Call the public aid
office in your community for information or assistance in making
an application or call the Illinois Department of Human Services
at 1-800-638-6833.

The program helps pay for all or some of the following:
* Medicare premiums, that is, the amount taken out of the
Social Security check each month.
* Deductibles or the amount that must be paid before
Medicare starts coverage for inpatient and outpatient
services.
* Coinsurance or the amount that needs to be paid after
Medicare pays its share.


Social Security Disability

If the person with dementia is under age 65 and unable to work,
they may qualify for disability benefits through Social Security.
Someone is considered disabled when their impairments prevent
them from working for a year or more. Alzheimer's disease is
considered such a disabling condition. Monthly benefits
continue indefinitely since disability is not reversible in cases of
Alzheimer's disease. Certain members of the disabled worker's
family may also qualify for disability benefits on the basis of the
worker's job record. Also, Medicare coverage is available to
people who have been entitled to disability benefits for 24
months, regardless of age.

To qualify for disability benefits, a person must have worked
long enough and recently enough under Social Security to be
insured. The number of years of work credits needed to qualify
for benefits depends on one's age at the time of disability.
Application for disability benefits should be made as soon as
disability occurs. The local Social Security office should be
contacted to determine if an application should be made by tele-
phone, mail or in person. A spouse or other relative may make
the application on behalf of the disabled person. After an appli-
cation is made, medical evidence will be reviewed to determine
if the conditions for disability benefits are met. It usually takes
about three months to reach a decision. Benefits generally start
with the sixth full month of disability. Back payments can be
made for up to 12 months before the month of application. For
further information, call the Social Security Administration at
1-800-SSA-1213 or contact one of its local offices.


Supplemental Security Income

The Social Security Administration has another program that
makes monthly payments to people in financial need who are
disabled, blind or age 65 or older. Medical requirements to
receive supplemental security income (SSI) disability checks are
the same for Social Security. However, there are certain
differences between the programs. For example, no work history
is needed for SSI, but there are limits on assets and income for
people to be eligible for SSI.


Medicaid
___
Federal law offers financial
protection to the spouses
of nursing home residents.
___

A joint federal and state program called Medicaid assists the
states in providing health care to those with low incomes.
Medicaid is administered by each state and financed jointly with
the federal government. Major changes in Medicaid rules are
anticipated due to recent laws enacted by the U.S. Congress.
Therefore, any information described below may become
outdated. Federal law requires the states to provide a minimum
benefit package that includes hospital inpatient and outpatient
services, long-term institutional care, physician services and
transportation services. In Illinois, Medicaid is administered by
the Illinois Department of Human Services, which has offices
throughout the Chicago area. Call 1-800-252-8635 for informa-
tion.

Illinois law offers financial protection to the spouses of
nursing home residents. The law provides for an allowance from
a couple's assets that is exempt from consideration in determin-
ing Medicaid eligibility. This amount was $87,000 in 2001. An
income allowance is also provided for the spouse still living at
home. The 2001 allowance was $2,175 a month. The couple's
home, which is being used as a primary residence, and household
furnishings, are exempt from determination of assets. The
income and asset allowance is revised every year. Other states
also offer similar financial protection for spouses.

Most assets that have been transferred more than 36
months prior to application for Medicaid are exempt in
establishing eligibility for this benefit. However, major changes
in laws may soon affect financial protection for spouses.
Generally speaking, rules regarding transfer of assets can be
complicated. Expert legal advice is recommended.


Veterans Benefits

If your family member is a veteran of the United States Armed
Forces, it may be worthwhile to investigate services provided by
the Department of Veterans Affairs (VA). As a general rule, a
veteran's eligibility is based on his or her income and any
service-connected disability. Several kinds of services may be
available, including long-term care at a VA facility or at a nurs-
ing home, financial help toward the cost of adult day care, up to
four weeks a year of residential care at a VA medical center at no
cost. This is designed primarily as respite for family caregivers
and can be divided into single weeks during the year. In the
Chicago area, applications for in-patient respite care can be
made to Hines VA Medical Center. Call (708) 343-7200. Also,
some veterans may be entitled to nursing visits in their homes.
These are typically referred to as hospital-based home care
programs. Veterans may be entitled to medication or equipment
for a nominal fee, if they are under the regular care of a
physician. For more information about these benefits, call the
Veterans Affairs Regional Office at 1-800-827-1000.



FINDING THE BEST LIVING ARRANGEMENT
___
Today, there are several
types of group-living
options, each with unique
features to meet the vari-
ous needs of a growing
population of older
Americans.
___


As the American population ages, the number of housing options
for older people is increasing. Until recently, the only alternative
for those who could no longer stay in their own home was to
move in with a family member or to a nursing home. Originally
designed like hospitals to care for the physically ill, traditional
nursing homes have an institutional atmosphere. Such an envi-
ronment is often unappealing to residents and their families, and
it may be inappropriate for residents with dementia who benefit
from a more home-like atmosphere.

The increased demand for something beyond the traditional
nursing home has given rise to some creative alternatives. Today,
there are several types of group-living options, each with unique
features to meet the various needs of a growing population of
older Americans.


Retirement Communities

These communities were built for healthy, independent older
individuals. They usually offer studios and one or two-bedroom
apartments. Housekeeping and transportation services are often
available. Most retirement communities have a common dining
area and meal plan. Leisure time activities are also organized for
the residents. Fees are paid on a monthly basis and there are no
entry fees.

Traditional retirement communities are free-standing enti-
ties with no additional levels of care. However, in recent years
there has been a gradual shift toward accommodating residents
of retirement communities who have mild disabilities. Although
many retirement communities have added a nursing home wing
or a separate health care facility, there are many without
additional levels of care.

Most retirement communities have adapted to the changing
population by forming relationships with outside agencies that
provide additional services, such as personal care on a fee-for-
service basis. Such agencies offer a range of services from a bath
once a week to monitoring medication on a daily basis. These
services are typically not included in the monthly fee and must
be paid for privately. In other retirement communities, assisted
living programs have also sprouted up that allow for certain
services to be provided on-site at a fixed monthly fee.


Assisted Living Facilities

Like retirement communities, assisted living facilities (ALFs)
offer private rooms or apartments and communal dining. In addi-
tion, they provide some personal assistance and 24-hour
supervision. By establishing relationships with private agencies,
ALFs provide additional services, such as personal care to their
residents. These services may include such things as monitoring
medication or assistance with bathing.

The State of Illinois currently has no regulations governing
assisted living facilities, but legislation is under consideration. As
a result, the definition of assisted living differs from facility to
facility. For example, most retirement communities today indi-
cate that assisted living services are available by paying an extra
fee to a home-care agency on the premises. On the other hand,
some retirement communities have opted to create sections
within their facilities or on their campus that cater exclusively to
persons needing assistance with medications and personal care
tasks. Other facilities providing so-called "sheltered care" are
bound by state regulations and are sometimes marketed as ALFs.
The different meanings associated with the term assisted living
have created confusion among consumers in Illinois. Therefore,
it is wise to shop around in order to ensure that appropriate
services are available to match one's particular needs.

Persons in the early to middle stages of Alzheimer's disease
may benefit from living in ALFs. These facilities are not
designed to care for persons with advanced dementia, so transfer-
ring to a nursing home may be necessary in the future. Both
present and future needs should be considered when making
decisions about the best living arrangement.

The care offered in ALFs is sometimes just as costly as nurs-
ing home care, but most ALFs aim to operate at a lower cost.
Typically, payment for assisted living is based strictly on a
private, out-of-pocket basis. At this time, there are just a handful
of ALFs that will accept Medicaid as part of a demonstration
project.


Continuing Care Retirement Communities

Like assisted living facilities, continuing care retirement commu-
nities (CCRCs) offer more care than traditional retirement
communities. They were established to provide a continuum of
care as needed, leaving the healthy residents to live as indepen-
dently as possible while simultaneously providing nursing care to
residents who require it. The level of care ranges from minimal
to that of a skilled nursing facility and is provided on the same
campus, allowing residents to remain a part of the community.
The basic premise of continuing care is that older people in
reasonably good health may first enjoy independent living in the
retirement section while having the security of nursing care, if
necessary, in an adjacent section of the same facility.

The retirement home section of a CCRC may be appropri-
ate for persons in the early stage of dementia, while those
requiring more assistance may need services available in other
levels of care. Married couples who include one spouse with
dementia may be well served in the retirement section as long as
the well spouse can manage the day-to-day needs of care.
Although the retirement home section offers minimal services,
additional services, such as personal care, can typically be
purchased on a fee-for-service basis through an outside agency.
Some facilities require that all residents be relatively
independent at the time of admission, while others may accept
those with different levels of need.

Most CCRCs require an entrance fee plus a set monthly fee
with the guarantee that any needed care will be provided indefi-
nitely. Such an arrangement offers lifetime security for a fixed
cost. Other facilities base their fees on the level of care a resident
requires; in other words, residents who need more health care
will pay a higher fee than those who require less care. Some
facilities accept Medicaid for nursing care after residents deplete
their assets, while others accept private payment only.


SELECTING A NURSING HOME

Perhaps one of the toughest decisions you may need to face is
whether to move the person with dementia to a nursing home.
Reasons for placing someone with dementia in a nursing home
include: serious illness or the need for constant care; behavioral
problems that may endanger the person's safety; incontinence; or
the exhaustion or illness of the caregiver.

Before deciding on a nursing home, it's a good idea to look
around and educate yourself about the services offered. Visit
several facilities to compare what is available. You may want to
gather this information even if the person in your care never
needs a nursing home. It's best to be prepared in case there is a
crisis someday, requiring the person to be placed in a nursing
home immediately. Many nursing homes have waiting lists so
planning ahead is very helpful.


Step One: Gathering Information

Before you visit a facility, do some research. Acquaint yourself
with the three types of nursing homes: skilled nursing, interme-
diate care and sheltered or residential care. A growing number of
facilities incorporate all three levels of care under one roof.

1. Skilled nursing facilities provide 24-hour nursing care deliv-
ered by registered nurses, licensed practical nurses and
certified nursing assistants. The emphasis on medical nursing
in these facilities may include physical, occupational and
speech therapy.

2. Skilled nursing facilities often incorporate intermediate care
sections as well. Intermediate care is required for people who
are not capable of independent living, but who still have
some skills and abilities. Licensed practical nurses and certi-
fied nursing assistants provide most of the care. The activities
and rehabilitative services emphasize maintaining the
residents' abilities.

3. In sheltered or residential care facilities, residents must be
able to dress and bathe themselves and remember when
meals are served. They cannot be at risk for wandering. Some
sheltered homes give people minimal assistance with
personal care and there is generally some medical care
provided. These facilities encourage people to socialize and
participate in activities.

Keep in mind that some long-term care facilities have units
just for Alzheimer's patients. These are called "special care"
units. They are supposed to emphasize people's abilities and
minimize their disabilities through a focus on activities. Special
care units vary in size and program implementation and have
specially trained staff. They may cost more per day than other
units in the facility. A fair question to ask when considering a
special care unit is: "What exactly makes this unit special
compared to the other units in the facility?"

A facility that does not have a unit specially designed for
Alzheimer's patients but mixes people with dementia with other
patients is called "integrated." Thus far, there is no solid research
to indicate whether "special care" units or "integrated" units are
more effective in providing quality care to people with dementia.
You will want to find out the cost per day of certain nursing
homes and whether there are extra charges (e.g., for
incontinence supplies). Does the home accept Medicare? Does it
accept Medicaid reimbursement? If the person with dementia is
on Medicaid, will they be moved to a designated area of the
home? If needed, find out if the facility has a contract with the
U.S. Department of Veterans Affairs.

___
Can families be actively
involved in caregiving
activities?

Does the facility have
"resident care plan"
conferences and are fami-
lies encouraged to attend?

Does the facility have
support groups and
educational opportunities
for families?
___


Step Two: Visiting Nursing Homes

Now that you've gathered some information about nursing
homes, arrange to visit several places. Before visiting a facility,
call first and ask if the home admits people with dementia and
whether the home has openings now or a waiting list. If you're
interested, set up an appointment. Make sure a qualified staff
person shows you the facility and answers your questions. Ask a
friend or family member to accompany you. Getting another
person's impressions of a place is helpful and you'll appreciate the
support. It's a good idea to spend at least an hour visiting a facil-
ity. You might also consider making an unscheduled visit to see
how the facility operates at varying times of the day.

When evaluating a nursing home and meeting with its staff,
be honest. Describe the person with dementia in a candid way
that allows the staff to understand the kind of care needed. As
you describe the person's behaviors, ask such questions as "How
would you care for someone who wanders and is combative when
you try to bathe her?" Look for answers that sound logical and
realistic.

The following questions are meant to serve as a guide as you
evaluate a nursing home:

- Care of residents
* Do residents appear happy and alert? Are they responsive to
the people around them?
* Are the staff and residents enjoying each other?
* Are residents clean and well groomed?
* How is mobility encouraged? Are there range-of-motion
exercises for residents?
* Are residents moved to different parts of the facility as their
needs change? How is this determined?

- Staff support
* What is the staffing ratio: nurses to residents and nurses aides
to residents? The recommended ratio of nurses aides to resi-
dents is 1-to-8 or less.
* What percentage of the nursing staff is from an agency,
which means they are not employed by the home but help
fill in for vacant positions or vacationing staff? (It is recom-
mended that the number not exceed 25 percent.)
* Does staff speak understandable English?
* Is the staff specifically trained to work with people who have
Alzheimer's disease? What kind of in-service training is in
place and how often does it occur?
* How does the staff handle residents who wander or who are
combative?

- Activities available
* Does the facility have a full calendar of large-group and
small-group activities that emphasize cognitive, physical and
psychosocial needs?
* What is the ratio of activity staff to residents?
* Does the facility provide field trips? Are there weekend
activities and intergenerational programs?
Are worship services offered?

- The nursing home environment
* Is the home a cheerful place and is it clean and well
maintained?
* Are the activity rooms spacious and well equipped?
* How many residents to a bedroom? Can residents bring
belongings from home, such as furniture?
* Is the facility safe? Do doors have safety alarms?
* Is there an enclosed yard or garden area that is regularly used
for walking and outdoor activities?

- Legal/ethical issues
* Does the home honor a living will or a durable power of
attorney for health care?
* What is its policy regarding tube feedings and "Do Not
Resuscitate" orders?

- Facility certifications
* Ask to see copies of the home's license and certification.
Each state inspects and licenses nursing facilities according
to state standards.
* Is the home accredited by the Joint Commission on
Accreditation of Healthcare Organizations? Does it have a
quality assurance program that monitors the delivery of care?
* Has the facility's license been suspended in the last two years
because of violations? Ask the administrator or the local
department of public health for the facility's latest inspection
report.


Step Three: Coping with Admission Day

Admission day into the nursing home is often described by fami-
lies as very stressful. To make the transition from home to
nursing home easier, consider the following:
* Think about placing the person in a nursing home directly
following hospitalization when they may not realize the
change. People who have attended a day care program may
also feel less stressed by the move. If the person is entering a
facility directly from home, however, you may want to
explain that the doctor has ordered the move to the facility
for medical tests.
* Assure the person that you still love them and that you will
be visiting often.
* Ask the facility for the best time of day for admission: 10
a.m. to 11 a.m. is often a convenient time because you can
then leave at the lunch hour.


Resources

For further information about nursing homes, contact these
resources in your area:
* The local chapter of the Alzheimer's Association (ask for a
copy of the booklet Family Guide for Alzheimer's Care in
Residential Settings.
* An Alzheimer's disease assessment center.
* A local hospital's social service department or discharge
planning department.
* Local area agency on aging.
* Senior centers or adult day care centers.


HOSPICE CARE

___
A chief aim of hospice
is to help the dying person
be as comfortable as
possible and to play a
supportive role for the
family.
___

Persons with Alzheimer's usually deteriorate slowly and may
remain physically healthy for many years into the disease.
However, they ultimately may become totally dependent on
others for basic needs and have difficulty with walking, talking
or swallowing. Such complications create a risk for falls and
infections like pneumonia, which may cause death. Caregivers
face difficult decisions at this critical point: Should these recur-
ring problems be treated or should the disease be allowed to run
its course? If the latter option is chosen, hospice may be the best
source of help.

Hospice refers to a home-based program that tends to the
physical, emotional and spiritual needs of people who are
expected to live six months or less in the opinion of their physi-
cian. It is available to people who live in their own home and to
people who live in a long-term care facility. A chief aim of
hospice is to help the dying person be as comfortable as possible
and to play a supportive role for the family. It does not try to
hasten death or extend life through artificial means, but regards
dying as a normal part of the life cycle.

The philosophy of hospice is in stark contrast to the
prevailing attitude in our society that medical technology should
be used to sustain life at all costs. For example, hospice empha-
sizes comfort measures instead of the use of feeding tubes or
breathing machines. Those who care for family members with
Alzheimer's disease usually prefer hospice care instead of
advanced medical technology in the final stage.

Hospice services typically include visits from a team consist-
ing of a nurse, physician, social worker, pastoral counselor, home
health aide and trained volunteers. Any needed medications,
medical equipment and supplies may also be provided.
Bereavement services are usually available to families for up to
one year. A majority of the 1,700 hospice programs in the
United States are certified for reimbursement through Medicare,
Medicaid or private insurance. There is no charge to the recipi-
ents.

For more information about hospice programs, contact the
Illinois State Hospice Organization at (773) 324-8844 or
National Hospicelink at 1-800-331-1620.