Quotes about Dementia
The psychological frustration of seeing a loved one, particularly a parent,unable to accomplish the simplest actions of toileting, eating and dressing can cause serious depression.
Research confirms that carers are at high risk for physical and mental ill health.(Ritchie and Ledesert 1992) The economic costs of dementia are considerable, and a significant portion must often be borne by the individual families. If care is provided at home, the carer may have to give up employment. The impact on society is equally tragic. The increase in the ageing population and consequently, in the incidence of dementia, is accompanied by social and cultural changes that will result in greatly increased cost of dementia care. Home care is becoming more difficult, as family sizes shrink, divorce rates rise and extended family relationships are weakened by greater mobility in the labour market.
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.
- 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, totalled 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.
- 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)
- 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)
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 for 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 and may include care provision or income supplementation. The families themselves often become 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 ).
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)
- 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)
- 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.
- States also vary in degree of access of medical records for patients and their families.
Most health care systems do not address dementia in its own right; dementia care is provided 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.
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.
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.
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.
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.
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.
- 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.
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.
- 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 to €74 [PER DAY]. People under 65 years of age with Alzheimer’s disease are also entitled to benefits depending on their earnings and number of dependants. Carers are also eligible for allowances, depending on earnings, hours worked and number of dependants. 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, 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.