Report on Dementia in USA Scope of the Problem by hql16169


									                                        Report on Dementia in USA

                                           Scope of the Problem:

According to the Alzheimer's Association, 5.3 million Americans have Alzheimer's disease (1). The rate of
occurrence of cognitive impairment among the older population increased over the past decade. There
were 8.9 million informal caregivers providing care to someone aged over fifty years old with
dementia.(2) Almost 79% of those who need long term care live at home or in community settings,
rather than in institutions.(3) From 2000 to 2002, the amount of licensed assisted living and adult home
facilities increased from 32,886 to 36,399 nationally. This reflects a trend towards community-based care
instead of nursing homes. (4) Most assisted living facilities are unlicensed. Most will discharge
residents when they become too burdensome for them This hampers the ability of these
individuals to find appropriate services outside of nursing homes or other institutions (9). In 2002, there
were 1,458,000 people in nursing homes nationally. (5)

Estimated public and private spending on long-term care services exceeded $180 billion in 2002. $37.2
billion, or 21%, was paid for out-of-pocket by individuals and families. (6)In 2002, $103.2 billion dollars
were spent on nursing home care compared to $36.1 billion dollars for care in the community. (6) In
2000, the estimated economic value of informal (i.e., unpaid) care giving is more than both community
care and nursing home care combined—$257 billion. (7) Expenditures for skilled nursing facility (SNF)
care are much greater than care provided in other settings. Average expenses per older adult in a skilled
nursing facility can be four times greater than average expenditures for that individual receiving paid
care in the community. (8)

Levels of Residential Care: Remaining At Home

By far, most people continue to live in their own homes in the US. There are many reasons to
recommend this. Generally, it is preferred by the elderly. Moreover, it is a familiar environment and that
is advantageous for those whose memory and concentration are diminishing. A relocation from a home
is challenging for most people but extremely so for those who are suffering from cognitive deficits. Often
though, support is needed to maintain this arrangement. Tasks that may require assistance with are
often referred to as ADL's (activities of daily living). These are: hygiene (bathing, grooming, shaving and
oral care), continence, dressing, eating (the ability to eat), toileting (the ability to use a toilet),
transferring (moving oneself from toilet to bed, bed to chair, etc...). This categorization of assistance is a
generally accepted basis for judging need for funding for help. For example, there exist private insurance
policies that will pay for personal help in the home. It is typical for such a policy to say that they will pay
for this assistance when there is a need for help with three or more ADL's. Therefore, if someone might
break a hip and return from the hospital unable to walk, it is likely that they'd need help transferring,
bathing and dressing. As such that insurance policy would pay for the care. However, in the case of
dementia it could be problematic. Particularly so in the mild to moderate stages of dementia. Many of
the ADL's are unimpacted in the earlier stages. The area of qualification for private insurance benefits is
an evolving area. Some policies allow for eligibility regardless of ADL needs if there exists a diagnosis of

It should be understood that the need for assistance with ADL's, no matter the amount or severity, does
not clinically require relocation out of the home. It is fully feasible to acquire assistance in these areas
within a home environment. However, the matter of funding is where a premature relocation may be
made necessary. Paying for these services is often private. In some states public resources are available
for these services. Others not. Typically, it is less expensive to keep people in their own home versus an
institutional environment. This is a controversial subject where accusations of policy decisions in regard
to funding for institutions over home care due to the influence of special interests are common.

The clinical need to leave the home is usually only made necessary in the advanced stages of dementia
when the need for a skilled nurse could exist (i.e., artificial nutrition/hydration). An additional reason for
the need to relocate can be one of safety or extreme behavior issues. If an individual with dementia was
exhibiting a common symptom known as “wandering” (leaving the home and getting lost), this can be an
obstacle to getting professional help in the home. Typically, professional help is obstructed by law from
restricting the movements of the people in their care. Naturally, this is what is necessary to keep people
who wander from getting lost and suffering injury. If the caregivers are informal (family, friends) the
matter is less of an issue. But, if that is not available then a person who wanders will likely be required to
relocate to a “closed environment” (nursing home, dementia unit). Another reason for relocation is
when there exists behavior issues with the demented person. Dementia often involves damage to brain
centers that are associated with areas of self modulation. This limitation can result in spontaneous
violence, disinhibition (sexually inappropriate behavior), agitation, etc... Whereas professional caregivers
are not precluded from working in these circumstances, as a practical matter the acquisition and
retention of professionals willing to work or keep working in these circumstances often gets increasingly
difficult. This can be particularly so if the patient is physically large and strong. There are medications
available to moderate these conditions but they are not always appropriate or effective.

There are different levels of professional home caregivers. Most states maintain strict guidelines
concerning required training, experience and scope of work. It should be emphasized that families are
not generally limited from hiring anyone to be a caregiver. However, when caregivers are employed
through an agency, usually state rules and regulations apply. Moreover, in order to access public funds to
pay for services, generally the caregiver must meet the state guidelines. This often, is the case of private
insurance plans, as well. Though, there are exceptions.


There are a variety of ways that homecare is paid for. The costs of care vary nationally but typically in
large metropolitan areas the cost is about $20/hr. Live-in homecare (where the aide actually stays 24
hours per day) fees are usually calculated at a fee equal to 12 hours work per day. Hence, a daily fee
might be $240. In these cases aides are expected to have no duties in their off hours but will respond to
urgent matters. Cases that require someone to be available (i.e., with wandering), usually require two
separate aides and are charged for every hour. Thus, double the cost of a live-in. This arrangement is
commonly called a “split-shift”.

The different funding sources for homecare are private, private long term care insurance, Medicare,
Medicaid and veterans benefits. In addition, other sources of income exist that do not pay for homecare
per se but are often available to offset the costs of care. They are private disability insurance, life
insurance, reverse mortgages, retirement benefits and accounts, SSDI and SSI.

Private long term care insurance policies- These are a relatively new insurance policies. At this point the
current generation of elderly rarely have these policies. They often cover the costs of homecare (and
often several other levels of care such as assisted living, nursing home, geriatric care management,
etc...). For homecare, the policies usually specify a maximum daily benefit for homecare for a maximum
period. They may limit the total value of the coverage. Eligibility for benefits will usually be based on
need as evidenced by a need for help with a certain number of ADL's. This can be problematic for those
with dementia as early stage often doesn't require help with many ADL's. However, more and more
policies carry the automatic eligibility for benefits if there is a diagnosis of cognitive impairment
regardless of ADL needs. Evidence of need is usually required to be certified by a "health professional"
hired by the insurer. This, anecdotally, has led to difficulties in insured getting coverage at the time of
need. These “health professionals” are hired independently by the insurers. They wish to continue to
receive assignments. They know the insurers would rather not pay out benefits. The process of
regulation of LTC policies varies from state to state. There has been a general diminution in the efficacy
of state regulation over the last decade.

The pricing of policies are generally correlated to the age at which the insured first applies (not unlike life
insurance). Like life insurance, if one applies and receives coverage in their forties, they'll pay lower
premiums. However, as one ages the premiums will go up and the ability to get coverage declines. As
with private health insurance in many parts of the country there is no guarantee of issue. And, as with
health insurance coverage of pre-existing conditions may not be covered. Still, it does appear that this
kind of coverage will become increasingly common. This is because of the limits of benefits available
through public programs. Throughout the country benefits for many areas of social services are frozen or
are in retreat. This is said to be due to unsustainable deficits on state and national levels. But, it is also
widely believed that insurers' pressures upon public officials to reduce public spending on public
insurance is highly complicit. This pressure comes in the form of financing for or the withholding of
financing for various officials' electoral needs. The end result is a dearth of public insurance for care that
the private insurers are eager to provide.

Medicare- Medicare is the federal single payer health insurance system for the elderly and disabled. It is
a federally administered program and as such the benefits are the same across the country. It provides
benefits for in-patient and out-patient care. Recently, pharmaceutical coverage was added. It is often
accused of being “wasteful and inefficient” however the administrative costs are generally around 1-2 %
of the cost. This means that for every dollar paid 98-9 cents are available for health care costs. In
contrast, the average private for profit health insurance policy has 20% administrative costs. These costs
include executives' pay, shareholder dividends, advertising, etc...

Medicare will pay for a limited amount of homecare. The homecare is generally provided after discharge
from a hospital. The care will usually be limited to a few hours per day for 2-3 days per week and will end
from 2-6 weeks after starting. The stated goal is to reach a level of function previous to hospitalization or
at a point sooner when no further improvement can be anticipated. Therefore, even if one has reached a
level where they still need help, if they're not improving, care is suspended.

Medicaid is the federal/state/county single payer health insurance program that is available to those
who have income and assets below a certain amount. It began as a poverty program but aspects of it
provide benefits to people in the middle and upper middle class. This is particularly true of nursing home
care. The cost of care in a nursing home is so great that inevitably even people who have save a large
amount of money run out and must resort to Medicaid.

Medicaid is only partially federally funded and regulated. It is partially funded, regulated and fully
administered by states and counties. As such, benefit levels can vary considerably from state to state and
even within states from county to county. In the area of homecare, coverage can be as generous as 24
hour live-in care to none at all depending on locality. For example in the State of New York, one can get
24 hour live-in care. It is not easy to get.. However, it is quite possible. Less than one mile across the
Hudson River in the State of New Jersey, this level of care is impossible. In no instance will Medicaid in
that state offer more than 20-30 hours per week of homecare. As such, many people who might have
been able to remain at home end up prematurely in nursing homes.

As mentioned, Medicaid eligibility varies from state to state. Eligibility is predicated on receiving less
than a certain amount of income per month and have less than a certain amount of assets. Certain
assets and income are excluded. Attempts to qualify have long involved individuals divesting themselves
of income and resources ahead of the anticipated day of need. This practice was complicated and so gave
rise to the formalized practice of “Medicaid planning” which is a subset of “Elder Law”. Due to the
increasing usage of Medicaid as a result of this practice, increasingly restrictive legislation has been
promulgated by the elected officials. In response, these laws are being tested in the courts for their
validity and their constitutionality (state and federal). Additionally, other legal devices and processes are
being attempted by the elder lawyers to circumvent the new regulations. Another problem that has
arisen with “Medicaid planning” has been the shifting of assets. One might be advised to transfer assets
to someone else. Who should that be? The son, the daughter, etc...? How does shifting to one versus the
other make the other feel? These issues are not uncommon to those who are preparing their Will.
However, in this case decisions made are known while one is still alive. Further, this money is not meant
to be a gift but to be used for the benefit of the transferor. What if the recipient spends or mismanages
some or all of the money? What can be done? Usually nothing, because under the law this transfer was
actually a gift. And if the money was transferred too recently and if that money was disposed of then
Medicaid may well decide one is not eligible for Medicaid despite the lack of resources. Needless to say,
the assistance of an elder law attorney has become vital.
VA Benefits- Veterans of service in the various branches of the American military are eligible to a wide
range of medical, financial, social and educational benefits for their entire life following their honorable
discharge. The VA runs a nationwide network of hospitals, clinics, residences that are owned and
operated totally by the federal government and paid for by the people through their taxes. It is socialized
medicine. In addition, the VA offers some financial assistance for home care for some veterans who
meets income/resource tests. The program is called Aide and Attendance.

                                          Living Outside The Home

There are a wide variety of residential alternatives to one's home that are available to those with
dementia. Reasons for consideration vary from personal preference to economic to service need. These
residential options include assisted living facilities, independent living facilities, continuing care
retirement communities, skilled nursing facilities (nursing homes)and a range of other levels of care that
are less common and could be considered experimental.

                                           Categorical Ambiguity

It should be borne in mind that these categories, with the exception of nursing homes, are not
necessarily clearly defined. Again, it is typically American, that regulation in many areas is governed by
states versus the federal level. As such what is called an assisted living facility in one state might not be
allowed in another and might not be an issue in a third state where no regulations yet exist for ALF's.
Another cause of this lack of uniformity is the absence of Medicare funding. Medicare is a federal
program which carries federal requirements for services to be paid for. This naturally forces greater
nationwide standardization which is its impact in hospitals and SNF's which offer a wide range of services
paid for by Medicare. Yet another aspect of this lack of standards is the virtually fraudulent self labeling
of a facility as something that few would consider it to be. In the case of assisted living facilities, the
general public has come to regard these as fairly upscale facilities offering comfort, safety, service but at
a high price. Yet, due to the lack of regulation, facilities traditionally known as adult homes, SRO's,
boarding houses, even flophouses have been able to “rebrand” themselves as assisted living facilities.

                                          Assisted Living Facilities

Assisted living facilities are congregate living environments that offer a range of services to the residents.
These services vary from facility to facility. They usually include meals served communally in a dining
room. Additional services may include medication management, laundry, cleaning, transportation,
assistance with ADL's (hygiene, grooming, toileting, etc...). As well, there are usually ongoing social
activities. The facilities are usually arranged to encourage group leisure (i.e.; public living rooms, porches,
self service snack areas, etc...). Often, they offer some level of medical oversight by nurses, social
workers, and occasionally doctors.

They are privately owned and operated. More and more are part of large corporate chains. Fees can be
quite expensive. Residents are renters and pay monthly rent. Usually, there is a lease and generally
protections offered tenants under local law are afforded ALF residents. As an institution there is no
federal definition of an ALF. As such, local/state laws may apply to the degree they exist. Fees can be
quite expensive ranging from $2-3,000/month to $10,000 per month. The only possible insurance
available to pay for this would be private long term care insurance. In addition, certain veterans are
eligible for a subsidy from the Veterans Administration known as Aide and Attendance. Military service
during specifically defined periods is a prerequisite. It is a means tested program, meaning only those
with income and assets below a certain amount qualify

                                                  Independent Living Facilities

Independent living facilities are residences that are restricted to people over a certain age. They offer
little, if any, assistance. They are meant for the older person that can live with no assistance but prefers
an environment of peers. As such, often there are social activities available. Some examples of
independent living are senior housing, senior communities, retirement communities. Often, they are
public housing complexes that are owned and maintained by towns, cities and counties. These are less
expensive than market rate homes and so are desirable to elders who live on a lower income. In
addition, over the last few years the same private corporations that have championed the assisted living
industry are also owning and operating these facilities. These though, are usually just as expensive as
their assisted living facilities.

                                           Continuing Care Residential Communities

Continuing care residential communities (CCRC) are residential communities that offer opportunities for
living along the full spectrum of need from independent living to skilled nursing. That is, typically people
will move in at an independent level and will move into different levels throughout the rest of their lives.
This has been very appealing for couples so that they can remain close by in the same community as
they age but their needs progress at different rates. Usually, these are very upscale places offering a high
level of living. There are a wide range of activities and facilities. Often, they offer multiple eating
facilities, movie theatres, sports opportunities, social and travel offerings. These are privately owned by
corporations. They are usually extremely expensive. Most require a very large upfront payment of
several hundred thousand dollars. It's presumed that the couple will use the proceeds from the sale of
the family home for this fee. Some will assist in the sale of the home and assist in all areas of the
relocation. Most CCRC's make most, if not all, of the upfront fee non-refundable. Unlike a private home,
there is no equity so the money is gone. Other CCRC's offer a sliding scale of refundability based on the
length of occupation. At least one CCRC chain offers the opportunity to recoup the deposit by the sale of
the residence at the point of departure at the prevailing rate. However, there is also a monthly fee.
When one enters at an independent level there is one fee level. Should one move into the assisted living
level or skilled nursing level, there are high monthly fees. If one cannot afford the increased fee then
these additional fees are collected from the deposit until the deposit is used up. Another concern, for
this residential alternative (as well as assisted and independent living owned and operated by private
corporations) is the financial solvency of the of the parent organization. In the current economic
downturn, there is an upsurge in bankruptcies for these communities. One notable one is the Erickson
Retirement Communities which filed for chapter 11 bankruptcy at the end of 2009. They maintain
residences for 22,000 people nationwide.

                                                     Skilled Nursing Facilities

Skilled nursing facilities (SNF) are also known as nursing homes. These offer the highest level of care.
They are also the most expensive. However, virtually all nursing homes accept Medicaid. Therefore,
should one spend all their resources paying for the nursing home Medicaid will pay the fees indefinitely.
Medicaid pays for the majority of nursing home costs in the US. This is true because monthly fees can
run up to $14,000 in larger metropolitan areas.

There is a range of quality in nursing homes. All nursing homes are regulated on the state level. Despite
this, there are real differences in quality. As a result some are more desirable than others and the nursing
homes can be selective. This emerges problematic for those with dementia. Particularly so for males who
are ambulatory. If one has dementia and can walk freely the presumption is that they are at risk of
wandering away. This then requires a locked unit and these are fewer in number than otherwise. In
addition, many of the more desirable facilities require a period of “private pay”. That means they will not
accept Medicaid for that period but only the higher private rate. This is justified by the “limited amount
of Medicaid beds”, so a patient must go on the waiting list privately till a bed opens up.

For a long time, elder lawyers assisted people with “Medicaid planning”. That meant moving assets away
from the individual for three years or more. After a three year period elapsed, they would qualify for
Medicaid and preserve their assets. However, the law was changed to expand the timeframe to five years
and the clock did not start ticking till the person was in the nursing home already. Therefore, they'd have
to pay privately for that period. If they live five years and they've still got money, they can keep it. Typical
nursing home fees over five years would be $500,000. In addition, elder lawyers have other devices to
allow for planning and as such, most people are advised to consult with one.

                                              Other Possibilities

There are a growing number of residences specifically for those with dementia. In NJ one can find
Potomac Homes. Another example of this approach is promoted by the Green House Project. This is an
organization which assists in the proliferation of this residential style. These are residences in the
respective community that are not identifiable as an institution specially constructed for the needs of
those with dementia. They are usually limited to a few dozen occupants. The layout is usually similar to
that of a home with private rooms, hallways, living room, kitchen and backyard. The open space allows
for wandering. The backyard is contained. Staff is available to monitor 24 hours a day which is helpful for
those impacted by sun downing. Staff specialists engage the residents with activities.

                      Special Services Offered Specifically for Dementia Population:

Day programs

Day programs for the elderly exist all across the country. Acceptance to them is based on the ability of
the individual program's ability to manage the particular person. Not all are set up to monitor people
with all levels of dementia. These programs typically offer transportation to/from the location, social
interaction, meals. The programs tend to follow a medical or social model. The former offers therapeutic
and medical assistance. The latter focuses more on social interaction. The average cost of these
programs are $61/day. Often, Medicaid or some level of state/county support is available. It is thought to
be cost effective given that a home health aide usually would cost almost three times the cost.

Night programs for those with "sun downing"

A common problem for those with dementia is a phenomena known as “sundowning”. This is where the
person's internal clock has reversed and they are awake at night and asleep during the day Doctors have
tended to find that sleep aids are not effective with this condition in terms of reversing the pattern. The
main treatment is to keep the person safe during times of wakefulness. This can be very disruptive to a
family and expensive to staff professionally. Far fewer in number but still available are night programs
for those with dementia. One particular program exists in Riverdale, NY and is run by the Hebrew Home
and Hospital. It operates from 7PM to 7 AM and includes transportation. It can be read about here: issues

Transportation is a complex issue. Firstly, is the matter of declining safety for one with dementia to be
driving. Usually one's ability to drive passes faster than one's ability to recognize that it has. It is complex
and challenging for family's to deal with this. Driving provides a significant sense of independence that
can cause emotional changes in someone who loses the ability or right. Moreover, in very large parts of
the country it is much more than a luxury. Public transportation is much less developed in the US than
other countries. In the very largest cities there usually can be found adequate to good systems. In the
common suburban and rural areas, much less so. On the other hand, the very real danger to the
demented driver to injury and loss and other drivers to injury makes addressing the issue unavoidable.
Moreover, should a family be aware that a family member should not be driving but does nothing to
interfere, they could be held liable for damages. Fortunately, states have introduced regulations where
an MD must report anyone with a diagnosis of dementia to the state. Depending on the state, they may
automatically revoke the privilege or obligate the person to take a driving exam. Many states allow for
the submission of a request on an anonymous basis for the evaluation of a driver.

After this comes the matter of substitute transportation. Very many localities maintain senior
transportation beyond the regular public system. These are often small buses that maintain fixed routes
or some may offer specific trips. These systems are usually very affordable. The drawback is usually the
limited amount of service or the limited places they go. Another option is an informal system of
volunteers. Increasingly, all across the country non-profit organizations are sponsoring coordination
programs to bring together volunteer drivers with those who need the help. This has the added value of
additional socialization and someone to check in on the person. Finally, there are the very many local
taxi services that are available. These would seem expensive at first, but often after inspection, when
one factors in the savings from not owning a car, the taxi service is economical.

Meals on Wheels home food services
Persons with dementia often lose the ability or will to prepare food. Meals on Wheels is a very old
service that delivers 1 or more meals per day to people in their homes. The service is usually offered at
no cost or is very reasonable. A very important value added feature of this service is that the deliverer
functions as an extra (sometimes the only) person who can monitor the recipient on a daily basis.
Deliverers are instructed to always see the person they are delivering to. If they don't make contact they
are obliged to report back to their agency.

        e) Case/care management

Coordinating care and resources is daunting in America. One of the biggest problems with eldercare and
medical care in general in the US is the fragmentation of the services. On the public level the nation is
divided into 50 states. Each state is made up of counties, then cities, villages, hamlets towns, etc... Each
potentially has services to offer. On top of the public system is the vast market of private services, non-
profits, professionals, institutions and organizations. It is far from uncommon that a family arrives at the
point of need in a crisis. All at once they are obliged to deal with a vast and byzantine array of issues and
means of addressing them. It is usually completely overwhelming. Into this confusion has come the case
manager and the care manager. The case manager is generally a social worker or nurse employed by a
hospital or social service organization to assist with coordination and location of services. The care
manager is usually a social worker or nurse who's privately engaged to assist a single family as a client.
The latter is usually able to handle a much wider range of issues and problems and carries a smaller
caseload than the former. These people function as managers of ongoing care, linkages to services,
benefits, entitlements, available for emergencies, etc... The case manager is usually limited to an
assessment and linkage to an initial suite of services. The care managers can be quite expensive. The
case manager is often available at a nominal fee.


Technology is becoming, as in most areas of American life, increasingly used to improve the lives of those
with dementia and the elderly in general. One of the earliest uses of technology is the Safe Return
program administered by the Alzheimer's Association. This is where the individual wears a badge or
bracelet with an ID code and a toll-free # on it. Should the wearer become lost he/she can be
reconnected with family when someone calls the toll-free number and submits the ID #. In addition to
name and address, contained in the database is usually medical information including providers,
diagnoses, medicines, etc.. Particularly useful should the person be unconscious. Other useful
technologies are:

    1) PERS- Personal emergency response systems- These are useful in the home. The person would
       wear a necklace or wristwatch with a button. If they need help, a message would be sent out
       through the telephone system that sends over help (i.e., 911, family, neighbors, etc...)

    2) Automatic pill dispensers- Machines that give out medicines in the right amount at the right
       time. In addition, they usually announce at the time that it is time to take the dose. They can
       sense that meds have been removed from the cup or not. If not, a person will call to follow-up.
        Of course, these are not fool proof (person removes meds but does not consume them, etc...).
        But, often these are successful.

    3) Cell phones with GPS- There are cell phone services with the ability to locate the cell phone.
       Verizon maintains a service called Family Locator Service. This can be very helpful but, of course
       again, is not fool-proof. The person has to remember to take the cell phone. The cell phone must
       be charged.

    4) Home sensors- A system marketed by GE is called QuietCare. It is a system of monitors placed
       around the home to monitor movement. The data is transferred to a server where it is analyzed
       for irregularities in activity. If there are problems noted then a report is sent to a caregiver. Other
       systems available can monitor sleeping patterns, shower and toilet use.

        Caregiver Support and Education

Care giving can be VERY difficult and stressful. There is a very large amount of instruction and support
available by the internet at various websites. Also, numerous private non-profit organizations offer
support groups for caregivers. One organization (Dorot) offers telephonic support groups for caregivers.
This is especially useful for those who simply cannot leave their loved ones alone.

                                               Current Issues

                Geographic distance of family members

Distance is a big issue for care of the elderly and those with dementia. The US is a very large nation.
Moreover, in the last several decades, certain sections of the country have seen low growth or decline.
As such, children have felt the need to relocate away from their communities that they grew up in to find
opportunities to allow them to live a standard of living they'd grown up with. This has caused many to
move very far away from parents and grandparents. In earlier times, many social needs were met by
families. Now, they were not around. As well, as time has progressed, life expectancy has increased.
These two factors (life expectancy, the geographic distance of family members) have come together to
make elder life challenging

                Time consumption of care

There is also the issue of the time demand for elder care. The middle age generation has come to be
known as the "sandwich generation". That is due to the fact that people have chosen to have children
later (so as to develop a career first) right around the time their parents are starting to get needy. In prior
times, their parents might well have assisted in the rearing of their children. But now, the grandparents
need help themselves. In a prior time, the grandparents might have passed on. Now, they're living longer
and are needier due to the prevalence of dementia. As well, both middle age parents/children are
needing to work. Due to the increasing stratification of wealth in the US with a poorer middle class, most
families require two parents to work. This puts the middle class family raising their children, caring for
their parents and having to hold down two jobs while doing it. Hence, the term "sandwich generation".

                Resistance of People With Dementia to Care and Their Rights

It is very common for older people, in general, to be resistant to help. There are very understandable
matters of pride and autonomy involved. However, common with the process of dementia is a lack of
recognition of declining abilities. A person ought not to be deprived of their right to make decisions
about themselves prematurely. However, there is the real issue when a person begins to lose the
capacity to make decisions in their own best interest. This matter engenders a very complex issue of
when that point has been reached. America is a nation that is very strongly about protecting individual
rights. This ethos plays out very strongly in the legal and ethical process that is engaged when
consideration of when to intrude on a person's rights to make decisions for themselves is begun. This
matter is truly a "double edged sword". For example, it is not unheard of for an elder living in their home
to be the victim of a landlord or investor, to try to have action taken to find that person legally unable to
take care of themselves. The law has a process to protect them from this awful abuse. However, there
are times when the mildly demented elderly really need to made to accept more assistance than they
express willingness for. But, a judge guided by principles of non-interference unless there's an "imminent
risk of injury" or "least restrictive alternative" may well provide too little oversight and great harm could
occur unnecessarily.

                What's Done When People With Dementia Can't Make Decisions

                        Advance Directives

Advance directives are legal documents that an individual completes to accord decision making authority
to other people when they cannot or don't want to. A health care proxy is someone designated to make
health care decisions when the person cannot. One reason could be advanced dementia. A living will is a
document that specifies for the health care proxy and other medical providers specifically what he/she
would like done or not done in certain circumstances. A power of attorney is a legal document that
allows for a designated person to exercise financial and legal decisions for that person. Depending on the
document they could be restricted to only exercising this authority when the person can't or it could
allow for exercising the powers even when they are able. These documents vary from state to state. One
very important feature is that they cannot be originated when the person has lost the legal ability to do
so. In the case of dementia, if the stage is too severe, the law would hold that the person was not able to
understand the power they were assigning to someone else.


A guardian or conservator is someone not unlike a parent. It is someone who has authority to make
decisions for another person when a court of law has determined that there is a need. A court will
determine the extent of the power. Typically, they will accord power over person and/or property. This is
what is necessary in the event that a person has not completed an advance directive while they were still
legally able to. It can be a very difficult, time-consuming, expensive and contentious process. As
mentioned before, resistance to help by the elderly is not uncommon. This very public declaration of
their lack of ability to care for themselves can be emotionally traumatic. It involves a variety of "experts"
testifying to their opinion that a person needs or doesn't need control over their lives. Generally, a family
member is preferred to take the role. But, absent such a person a public professional guardian would
likely be selected. This process could save a person's life. On the other hand, the process can be so
complicated and contentious that it might not be completed before injury or death occurs first.

                                  5Complexity and fragmentation of care

The healthcare system in America is not really a system but a market. On the public level the nation is
divided into 50 states. Each state is made up of counties, then cities, villages, hamlets towns, etc... Each
potentially has services to offer. Then, as mentioned, one of the primary funders of care is the Medicaid
system. This system varies from state to state and often county to county. On top of the public system is
the vast market of private services, professionals, institutions and organizations. What has caused this
fragmentation are a variety of factors. One is the Constitution itself. Prior to the establishment of the
nation, there were 13 colonies. In the formation of the nation these colonies were very protective not to
cede too much power the federal government. The history of the nation is one where over long periods
of time the power and authority of the states relative to the federal government has increased and
decreased. This has given rise to systems and programs on both the federal and state level. Another issue
is historic tug of war between the desire for a strong government that provides public services versus a
society where services are provided by a private sector. This tug of war, on a policy level, often emerges
with outcomes that are neither one nor the other. They are political compromises based on the political
spirit of the time and that might not result in the best outcome for the public.

Yet another real cause is the self-interest of industry to be the provider of care. Whereas, it might be
more efficient for a strong central government to deliver a service, the private industry covets the wealth
it can glean and so exercises every influence to make sure it is in that role. As a result, we may have
multiple provider sources where one might be better. For example, for those over 65, we've Medicare. It
is the single source health insurance for that group. For doctors, they complete a single form for
reimbursement. For those under 65 there is private commercial insurance. Thus, there are dozens of
providers. Each with their own forms, policies, procedures, contracts, etc... A single doctor needs to deal
with all these different companies. They must maintain additional staff to cope with this. The
conventional wisdom is that all these companies makes for competition and thus lower costs and higher
quality. In fact though, the American healthcare system is twice as expensive per capita than the second
most expensive in the world. The WHO rated it 37th in quality.

Finally, another cause of the fragmentation of the system is the political tendency towards
incrementalism. This has increased greatly with the spread of Conservatism. Problems in government are
addressed very specifically rather than comprehensively. So, at a given moment a need might be seen for
more insurance for children up to age 6. There still may be need for insurance for people older but that
will be addressed later. Maybe. Medical problems on a policy level are dealt with slowly and specifically.
This approach is further supported by the belief that the marketplace will address the problem. And so,
over years, a multitude of programs and services evolve that do not meet needs, overlap, meet them in
some states and not others, etc...

                                Varying Levels of Care From State to State

Again, due to the origins of the nation being a compromise between federal and state power, care varies
from state to state. Most pronounced of this is the Medicaid insurance system. It is half funded federally,
but administered by states. Thus, there are 50 different systems. As a result, someone in a nursing home
in California on Medicaid, desiring to return to a nursing home and reunite with family back in New
Jersey might well experience complexities not dissimilar to that of someone coming from another

                Varying Levels of Care Between Urban, Suburban and Rural Areas

A problem not uncommon all over the world. Medical services are in greater availability in more
populous areas. Moreover, transportation to/from these services is better in more urban areas. One very
critical example of the manifestation of this problem is the extreme challenge in getting professional
homecare workers to the homes of people with dementia who live in less populous areas. As mentioned,
America's public transportation system is less developed (except in major metropolitan areas) than in
many industrialized nations. The primary means of transport is the private automobile. However,
homecare workers tend not to highly be compensated making private car ownership less likely than
average. Thus, in suburban and particularly rural areas, getting workers to the homes of the needy is a
significant problem. This is additionally frustrating for potential workers due to the fact that employment
opportunities in rural areas are historically less and so there are a potentially large source of caregivers
who cannot work.

A program run by the federal government is designed to address the shortage of medical providers in
areas of need. In the US, medical providers must pay for their own education. In order to do so, most
take out very large loans from banks and government itself. A program called the National Health Service
Corps Loan Repayment program offers $50,000 loan repayment for two years service in underserved
areas. This is, in addition to, the regular compensation of the position itself. Additional service beyond
the minimum two year commitment offers additional loan repayment possibilities.

                 Increasingly Limited Levels of Public Support for Care and Costs of Care

Around the time of the election of Ronald Reagan began a conservative right wing shift to the nation.
President Regan popularized the phrase "welfare queen" during his 1976 presidential campaign. His
famous characterization of a woman from Chicago that stated

"She has eighty names, thirty addresses, twelve Social Security cards and is collecting veteran's benefits
on four non-existing deceased husbands. And she is collecting Social Security on her cards. She's got
Medicaid, getting food stamps, and she is collecting welfare under each of her names."[4]

Of course, he was in no way referring to the elderly or those with dementia. Ronald Reagan himself fell
victim to Alzheimer's. However, this really became part of a much bigger movement that characterized
all social programs as vulnerable to fraud, wasteful, part of a "nanny state" and generally contributed to
weakness in the national character and opposed to the American ethos where everyone takes care of
themselves and their families. As well, there was a keen interest in tax reduction. This began a process
known as devolution in which social programs became fewer and poorer.

                                Increasing Requirement for Professional Help

As mentioned before, over the last several decades there has developed a specialized subset of law
known as elder law. This area of law deals with the creation of Wills and drafting of advance directives. It
also has focused on assistance in the creation of instruments to protect one's estate. As wealth of a few
has increased so has the interest in being able to pass this wealth onto heirs with as little contribution to
the tax system as possible. Part of this planning also involves structuring assets and income in a manner
consistent with prevailing state law that allows for maximum eligibility of state provided services. For
some this appears to corrupt if the individual really could easily afford their own care. However, it is
generally employed by others of more modest means due to the fact that the cost of care is so great (a
nursing home in New York City can cost $14,000 per month) it is necessary to avoid a family being
completely bankrupted. Moreover, there's a need to protect a remaining spouse while her spouse is in
need of expensive care. This need to protect the "well-spouse" often ends up in a need for divorce
because of Medicaid rules that require that a couple spend down their assets before qualifying for
assistance. For all these issues, the assistance of an elder law attorney has become a virtual necessity.

In addition, several other fields have sub specialized into areas of geriatric and dementia care. These
include social workers, internists, nursing, physical therapists, financial planners, etc... The market has
clearly responded to the calling. However, there is a clear undercurrent in the society of a longing "for a
simpler time" where, in the imagination of many, grandma moved into her children's house and that
was that. Moreover, there's also a feeling of cynicism amongst many that there's a lack of need for all
these specialists and that this represents nothing but opportunism. On the other hand, many feel
appreciative of the extra help and feel it is partially responsible for extension of life and increased quality
during that period. Still further, many of those employed in these fields feel grateful for the opportunity
to perform what they feel is a meaningful and valuable service as compared to many others.

                                           Early Onset Population

Early onset dementia presents serious and different challenges than other forms. It is not nearly as
prevalent as those after 65. However, it can be seen in those as young as 30 years old. It can cause a
serious loss of potential income. There comes a real challenge to self esteem of someone who cannot
work. Future planning is disrupted. Children of a parent with his condition are often unable to accept it
as they try to adjust to their own development. Benefits for people with dementia are usually restricted
to those over 65. Normally, at such an age the person would have been eligible for retirement benefits.
The Social Security Administration maintains a benefit program for those who are disabled. Basically,
anyone determined to be disabled is awarded the same level of income as someone might get at
retirement. However, in the case of those with early onset dementia, traditionally they were initially
rejected only to be approved after an appeal. The appeal process could be very challenging to someone
going through this illness. Happily though, the SSA has decided that effective March 1, 2010 early-onset
Alzheimer's disease will qualify as a "Compassionate Allowance Condition". This should mean a greatly
expedited handling of applications.

Special Interest Misdirection of Public Resources

This problem is common to many areas of American society. The American political system requires ever
increasing sums of money to fund the election campaigns. This makes political office holders potentially
beholden to the sources of those funds. There are limited to no public sources of funding. The sources
are overwhelmingly private. As a result, legislation and policy tends to be supportive of those industries
that are most supportive of office holders. This expresses itself in the care for those with dementia in the
establishment of standards that can lean towards more frequent institutionalization than is clinically
indicated. Whereas, homecare is generally less expensive for the taxpayer than nursing homes, the
availability of Medicaid funded homecare can be severely limited in many states. This limitation could be
expressed as a flat cap on the number of hours for homecare. It could also be expressed by assessment
tools that adjudge the patient as not being able to be cared for at home, when in fact, with sufficient
care, they could be. This, of course, works to the financial benefit of the nursing homes.


1) Hebert, LE; Scherr, PA; Bienias, JL; Bennett, DA; and Evans, DA. “Alzheimer’s disease

in the U.S. population: Prevalence estimates using the 2000 census.”

2) Alzheimer’s Association and National Alliance for Caregiving. Families care: Alzheimer’s caregiving in
the United States 2004. Washington, DC: Author, 2004.

3) Agency for Healthcare Research and Quality. Long-term Care users range in age and most do not live in
nursing homes: Research alert. Rockville: Author, 2000.

4) Mollica, R. State Assisted Living Policy: 2002. Portland: National Academy for State Health Policy, 2002

5) National Center for Health Statistics. Health, United States, 2004. Hyattsville: U.S. Department of
Health and Human Services, 2004.

6) Komisar, H. & L. Thompson. Who Pays for Long-Term Care? Fact Sheet, Long-Term Care Financing
Project. Washington, DC: Georgetown University Press, 2004.
7) Arno, P. S., Well Being of Caregivers: The Economic Issues of Caregivers, in T. McRae (Chair), New
Caregiver Research. Symposium conducted at the annual meeting of the American Association of
Geriatric Psychiatry. Orlando, FL. Data from 1987/1988 National Survey of Families and Households
(NSFH), 2002.

8) U.S. General Accounting Office. 2002. Aging Baby Boom Generation Will Increase Demand and Burden
on Federal and State budgets [GAO-02-544T]. <> (10 Jan

9) U.S. General Accounting Office. 2002. Aging Baby Boom Generation Will Increase Demand and Burden
on Federal and State budgets [GAO-02-544T]. <> (10 Jan

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