Planning for Alzheimer's Care
by Joseph A. Jackson, LICSW, CCM
is a chronic, progressive illness. As with other chronically ill
people, those with Alzheimer's disease need chronic care. Chronic
care differs from the acute care we receive in hospitals and doctor's
offices-it is delivered over time and fluctuates from day to day.
Chronic care is health care in the form of daily personal-care
assistance, supervision, medication administration, meal preparation,
companionship, shopping, cleaning, laundry, and so on.
America's chronic-care system is a patchwork of services that
varies from region to region and state to state. It includes community-based
and institutional care providers as well as state, federal, and
private funding sources. Many Alzheimer's patients are served
by this system-in their homes, in special "dementia-care"
programs, in adult day care facilities and in nursing homes. But
the health care professionals working in this system-our social
workers, nurses, therapists and case managers-are increasingly
frustrated in their efforts to meet the needs of the nation's
growing chronic-care caseload. No longer can they rely on the
once abundant Medicare and Medicaid programs to subsidize the
chronic care their patients need.
Alzheimer's disease is fast becoming
the most prevalent and the most disabling chronic illness in America.
"Barring a medical miracle, in fact, by the middle of [this]
century there will be as many Americans with Alzheimer's as currently
reside in the state of Pennsylvania." As our chronic care
system strains to capacity, people with Alzheimer's disease and
their families will need to utilize their own resources more effectively
to ensure the quality of their care. A new practice model-Community
LifeCare Planning (CLCP)-will help them do this. Here we offer
a few basic CLCP strategies to aid the long-term care planning
Four Steps in the
Step 1 - Advance
Alzheimer's disease is a dementing
illness. As it progresses, patients lose their memory, their ability
to reason, and the ability to understand the consequences of their
decisions. Once an individual with Alzheimer's disease has lost
competence, it is too late to designate the person(s) he or she
wants to make his or her health care, financial- and estate-planning
decisions. Yet choosing a decision-maker in advance of incapacity
can be critical to maintaining the quality of life for a loved
one with Alzheimer's disease, as well as for his or her family.
It is one of the best arguments supporting early diagnosis, since
most people in the early stages of Alzheimer's disease can execute
advance directives before their illness has progressed too far.
There are five advance directives-a
power of attorney, a health care proxy, a will, a living will,
and a Do Not Resuscitate (DNR) order. For Alzheimer's patients,
empowering family members or trusted friends to make health care
decisions (health care proxy) and to do estate and financial planning
(power of attorney) ensures that the caregiving effort won't freeze
up due to a lack of resources or the absence of a decision maker.
The proper execution of advance directives by elder law and estate-planning
attorneys is a critical component of any Alzheimer's care plan.
Step 2 - Estate Inventory
Before charting the course for a loved
one's long-term care journey, we must first determine where we
are. An estate inventory is a snapshot of the resources at one's
disposal that may be needed to subsidize caregiving. There are
six long-term care resources-1) health insurance, 2) income and
assets, 3) community resources, 4) family and friends (themselves
a resource for caregiving), 5) the home environment, and 6) the
client's capacity for self-care. An estate inventory defines three
of these resources-health insurance, income/assets, and community
resource eligibility. The other three resources-family/friends,
the home environment, and client capacity-are established by the
CareNeeds Assessment, the third step in the care planning process
We cannot efficiently plan or manage
long-term care without knowing how much care we can pay for ourselves
or how much can be subsidized by the community (local, state,
federal programs). A clear snapshot of our income from fixed sources
(social security, pension and other retirement income), of our
assets (savings, investments, equity in the home, and so on),
and what our health insurance will and won't cover (including
long-term care insurance) must be done before we decide on caregiving
arrangements for a loved one with Alzheimer's disease.
Step 3 - CareNeeds
Both the amount and the type of care
needed by an Alzheimer's patient will change over time. In the
early stages, periodic supervision and homemaking (shopping, cleaning,
and laundry) may be all that's needed. Gradually, the level of
care may increase to include higher levels of supervision, personal
care assistance, behavior management, or even placement in a specialized
dementia-care facility or nursing home.
A careneeds assessment for an Alzheimer's
patient examines what the patient needs, how much care his or
her family can provide, how the home is configured, and what the
patient is capable of. The assessment is best performed by family
members and/or loved ones working in consultation with mental
health and health care professionals skilled in Alzheimer's care.
Since many people with Alzheimer's disease are still living in
their homes-either with spouses, with children or alone-the best
place to turn for a careneeds assessment is often a home care
A skilled assessment by a home care
nurse, preferably with a dementia-care specialty, done in tandem
with a home health care social worker, can often be ordered by
a physician and paid for by Medicare. But if Medicare won't cover
it, the patient or family may have to pay. Spending a few hundred
dollars for the advice of a seasoned home care professional is
nearly always money well spent in determining the feasibility
of home care, how it will be paid for and in setting limits for
patients and caregivers alike. Families may also call upon independent
care managers or their local elder service agencies (Area Agencies
on Aging or AAA's) to perform the careneeds assessment.
Step 4 - Defining
With advance directives in place, resources
organized, and careneeds assessed, the actual planning can begin.
It is best to take a short-term/long-term approach to planning.
Immediate need must be met while plans for likely future needs
are constructed. And it is best not to confuse planning with wishful
thinking. The best approach is to hope for the best-plan for the
worst. Alzheimer's disease is progressively debilitating. Planning
for the "worst" acknowledges that nursing home placement
may be required at some point in time (costing as much as $6,000
per month in some areas) and that home care could become even
more expensive. Realistic planning for the potentially high cost
of long-term care forces us to find the estate-planning and community-support
solutions that can preserve the Alzheimer's patient's independence
as well as his or her savings-for the caregiving effort, for the
needs of a well spouse or a family's future.
Most care-planning options turn on
two primary factors-cost and living environment. Mapping out a
careplan often requires that we compromise between competing priorities.
Quality of care is usually the top priority and it is usually
defined in terms of the venue of care. The home is most often
preferred, but resource and caregiver limitations may force a
compromise choice for placement in a more restrictive setting.
Today, there are many residential choices
for people with Alzheimer's disease, the appropriateness of which
is first determined by safety concerns. Safety is first measured
by actual physical risk for injury and by behavioral and emotional
stability second. These risks are reduced by incrementally higher
levels of supervision, personal care assistance, and restrictions
on freedom of movement. Home care for a person with Alzheimer's
disease may not work if he or she cooks unsafely, smokes unsafely,
or tends to wander. In such cases, the family may be forced to
hire 24-hour supervision, or provide it themselves. And even if
this is affordable, it may not be the best choice for all concerned.
The next least-restrictive setting
may be an assisted living facility with some private-duty care.
If a person's cognitive function and self-care ability has declined
to where he or she requires more supervision, a rest home or specialized
dementia-care facility may work-still less restrictive (and less
expensive) than a nursing home, but possibly safer and often less
costly than 24-hour home care. And community programs may also
subsidize all of these options for income- and asset-eligible
Behavior management often makes planning
for Alzheimer's care particularly difficult. . But at the end
stage of the illness, behavior management may become less of a
challenge than basic personal care and intermittent nursing services.
Care planning must anticipate a sequence of living arrangements
that may, ultimately, result in a return to the home. Many Alzheimer's
patients become home care patients once again, for the final stage
of the illness.
Long-term care can be
likened to an expedition. As with all expeditions, planning is
a prerequisite to success. For a plan to work it must be adaptable
and it must be based on good information. The more knowledge one
has about the nature and course of Alzheimer's disease, the better.
Combining knowledge with the basics of long-term care planning
greatly increases the likelihood that a loved one will receive
the best care available and that s family's journey will be as
smooth as possible.
COPYRIGHT JOSEPH A. JACKSON,
2001. ALL RIGHTS RESERVED.