| Societal
Cost Factors
As with all statistics
on dementia, the cost to health systems, communities and families is difficult
to estimate because definitions of care differ. Most countries do not break
out dementia care from other illnesses and dementia has not been a policy
priority.
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Some studies, however,
have begun to analyse dementia care costs. The following examples provide
some idea of costs and what they include: The cost of dementia in Italy
is estimated as follows: Direct per-patient costs, measured in the use
of social and health services, drugs for palliative treatment and co-existing
illnesses, and medical aids such as wheelchairs, special beds and other
devices, totaled 4,248,000 lire a year, on average, or 2,194 Euros. Nursing
homes can add up to 4,000,000 lire, or 2,066 Euros, a month to this total.
In addition, cost of care is estimated at 6,000,000 lire, or 3,099 Euros,
per month. This figure assumes 36 hours of professional assistance and
484 hours of informal care.
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Cost of dementia
care in The Netherlands is estimated at between f30,000-100,000, or 13,613-45,378
Euros, per patient and the overall cost at f3,309 million, or 1,502 million
Euros.
The cost of
providing healthcare in Sweden in 1991 to persons over 65 years with moderate
to severe dementia was SEK 30 billion. Based on projected increases in
that population in the coming decades, those costs are estimated to grow
17 percent (SEK 35 billion) by the year 2000 and by 53 percent (SEK 46
billion) by 2025. (Wimo, 1995)
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The cost of providing
healthcare in Sweden in 1991 to persons over 65 years with moderate to
severe dementia was SEK 30 billion. Based on projected increases in that
population in the coming decades, those costs are estimated to grow 17
percent (SEK 35 billion) by the year 2000 and by 53 percent (SEK 46 billion)
by 2025. (Wimo, 1995)
A recent Canadian
study is instructive as it charts the dramatic increase in the cost of
dementia care as the disease becomes more severe. As might be expected,
the major cost component is institutional care, accounting for 84 percent
of the cost. Annual societal costs per patient are estimated at $9,451
(Canadian dollars), or 5,502 Euros, for mild cases. This figure quadruples
in severe cases to $36,794, or 21,419 Euros per patient. (Hux 1998)
Financial Issues
Few countries
have begun to plan for the growth of services required for an ageing population,
much less the systems by which people will be able to apply for, and receive,
help. None are ready for the influx of financial, legal and policy issues
that dementia poses.
Criteria for
eligibility and service provision differs among EU member states. Responsibility
fgor the cost of care may be divided amongst the patients themselves, their
families, insurance companies, local and national governments and charitable
organisations.
Support may be
means-tested or universal nad may include care provision or income supplementation.
The families themselves often beocme entangled in the bureaucratric complexities
of eligibility and entitlement.
In most EU member
states, individuals and their families are responsible for a significant
proportion of the cost: for example, 57% in France ( Warner et al, 1998)
and 30% in Spain ( Rasmussen, 1999 ).
Legal Issues
Although there
is no specific legislation regarding people with dementia in most Member
States, there are laws relevant to individual rights. (Warner et al 1998)
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Some states, such
as The Netherlands and the UK have made provision for power of attorney
or 'living wills' that permit people to stipulate how they want to dispose
of property and what medical treatment they authorize in the event of their
disability. In Ireland the Alzheimer Society of Ireland have campaigned
for and instrumental in getting Enduring Power of Attorney and are actively
working for the provision of living wills. (Winifred Bligh, ASI)
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States vary greatly
in laws that determine the degree of individual consent required for treatment
or hospitalisation, which can be a serious issue for people with dementing
illnesses. In Finland, for example, people have the right to refuse treatment
or a particular procedure until they reach the point, defined by law, where
they qualify under mental health legislation. Other states have no such
definition.
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States also vary
in degree of access of medical records for patients and their families.
Equity Issues
Most health care
systems do not address dementia in its own right; dementia care iss rovided
through general geriatric or mental health services. As a result, the type
and level of care available is extremely uneven.
Issues that mitigate
equity across member states are geographical, historical and socio-economic
in nature. many countries are characterised by serious income and class
equities, a history of unequal investment in social services, large rural
areas that make service provision difficult as well as different local
and regional practices.
In Denmark, for
example, initiatives are under way to create common standards for inter-agency
cooperation, which had been hampered by differing definitions of need and
service provision ( Warner et al 1998).
Ageism is also
cited as a source of inequity. In many countries, the needs of older people
receive less attention and fewer resources than those of younger people.
Utilitsation
is also more difficult for older people, particularly immigrant populations
who may not understand what services they are entitled to or how to access
them.
Policy Issues
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Belgium.
There is no special policy to assist carers, but families
may request financial support. Health insurance may intervene when the
patient is more than 60 percent disabled. Families may request help through
local municipalities.
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Germany.
All German residents must have health insurance. Costs for
treatment of Alzheimer's disease are borne primarily by insurers, but also
by the families. Nursing care insurance, which covers part of the cost,
was introduced in 1995. Up to four weeks of replacement care in the home
is also provided for the primary carer. Under certain conditions, carers
remain entitled to old age pension and accident insurance. Some tax benefits
and price reductions for basic services are also available. Welfare aid
is available to those who need it.
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Ireland.
People are entitled to different levels of healthcare depending
on their financial circumstances. The bulk of the care is carried out by
family members, with little targeted support from state agencies. Voluntary
agencies, particularly the Alzheimer's Society, receive funding that enables
them to provide some respite care at day care centres, and training for
care workers, as well as information and support for families. Low-income
families are eligible for a Carers Allowance to help patients remain in
their homes. Community nursing and home help are also available, and some
tax benefits are provided. There are few geriatric specialists or psychiatric
services for the elderly. The government, however, has formulated the objective
to help people remain in their homes with dignity and independence.
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Italy.
Italy has no specific policy for people with dementia. National health
insurance covers GP and hospital care. Patients pay a portion of specialist
and laboratory charges, depending on income. They are responsible for varying
proportions of medicines, but must pay the total cost of the new drug treatments
for Alzheimer's disease. Most patients are cared for at home. If conditions
require placement in a nursing home, the National Health Service covers
medical expenses. Some regional and local governments may help cover about
half the general costs for public and conventional nursing homes, with
the family covering the rest. The number of available beds is limited,
however, and most families must pay for private nursing homes (approximately
70,000 lire, or 36 Euros, a day). If patients are kept at home, families
are entitled to a monthly allowance of about 700,000 lire, or 362 Euros,
to help with nursing expenses. There is no uniform policy, and practices
vary among regions and between urban areas and villages. Direct medical
expenses are tax deductible.
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Luxembourg. Most
people with dementia are cared for at home; places in day centres are limited
and there is an average waiting time of three years for a place in a home.
Beginning in 1989, however, the government began to expand a program of
home services and day care centres/hospitals for people with dementia to
provide an alternative to institutional care. The State is obligated to
cover medical costs in State-run nursing homes as well as the cost of accommodations
for those with insufficient means. Help with home care services is also
available. Low-income families are eligible for care allowances and for
a limited amount of home care services. Some tax benefits and allowances
are also available. Beginning in 1999, the government is launching a new
programme of care insurance to help all citizens who are considered as
"dependent" to cover the costs of care. People will continue to receive
any allowances and/or care services to which they were previously entitled
until an individual evaluation of needs has been carried out.
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The Netherlands. Dementia
patients are cared for by means of a joint care system designed to maintain
people in the community and delay institutionalisation as long as possible.
First line care is provided by the National Health Services, GP, an extensive
network of community-based care services and regional mental health centres.
Specialised nursing homes, psychiatric hospitals, general hospitals and
organisations responsible for the care of the elderly form the second line,
along with voluntary workers. The private sector provides supplementary
care with state reimbursement. In 1995, about 1.1 million patients received
community care. Substantial increases in demand are putting a severe strain
on community care capabilities. Financing of dementia care is almost wholly
carried by the state or insurance with small contributions by patients.
GP services are covered by compulsory insurance, and community care is
heavily state-subsidised. In the case of long-term care, patients make
a fixed, compulsory and relatively small payment as well as a second, income-linked
contribution. In specialised nursing homes, contributions become compulsory
after six months' stay and are related to income and marital status. Residents
of homes for the care of the elderly are responsible for the full cost
of care.
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Sweden.
In 1990 the prevalence of dementia was estimated at 7.2 percent
of the population over 65, rising to 7.8 percent in 1995. Studies of the
ratio between people with moderate to severe dementia and the working age
population (20-64 years of age) show a ratio of 1.8 for 1990, rising to
2.2 by 2000. (Wimo 1995) Annual costs are estimated at anywhere from 375,000
SEK, or 42,122 Euros, for home care for moderate dementia to 535,000 SEK,
or 60,093 Euros, for more extreme cases. Costs are estimated at 490,000
SEK, or 55,039 Euros, for institutional care. Responsibility for care of
Alzheimer's falls to Borough Councils, which vary greatly in budget resources.
Sweden has no tradition of voluntary support to help meet shortfalls in
the local economy. Very little financial help is available to families
caring for dementia patients. Those deemed incapable of supporting themselves
or receiving family support are eligible for financial help, but amounts
may be limited. Some tax relief is available.
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United Kingdom.
About 25 percent of the cost of Alzheimer's disease to the
State is allocated to private residential homes, 24 percent to local authorities,
18 percent to inpatient and outpatient care, 11 percent to private nursing
homes and 7 percent to geriatric wards. (Gray and Fenn 1993) Families handle
costs at the early onset of Alzheimer's disease, although some benefits
are available. People with Alzheimer's may claim an Attendance Allowance
or Disability Living Allowance. In later stages, Invalid Care Allowance
may be available. These allowances, paid at different rates depending on
need, contribute towards the cost of personal care and supervision. There
are currently three rates of the care component of the Disability Living
Allowance, depending on level of care provided: from £13.60 to £51.30,
or 20 Euros to 74 Euros [PER DAY?. People under 65 years of age with Alzheimer's
disease are also entitled to benefits depending on their earnings and number
of dependents. Carers are also eligible for allowances, depending on earnings,
hours worked and number of dependents. Income support is a means-tested
benefit available to help with living expenses. Alzheimer's patients, who
have capital or savings of over £16,000, or 23,123 Euros, are expected
to pay in full for a place in a residential home. Local authorities determine
the amount of subsidy for those who do not meet this standard. Tax exemptions
are also available for impaired patients and for carers.
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