The challenge facing Europe on the eve of the millennium lies on developing an interdisciplinary combination of medical, clinical social, economic, governmental and personal approaches to those with dementia and their families
The European Institute of Women’s Health recognises the serious problems posed by Alzheimer’s disease and other dementias to European Member States. Dementia is a particular problem for women who are at increasing risk of the disorder as they age, and who are also primarily responsible for the care of dementia patients
The Institute has undertaken a cross-country comparison of policies and practices regarding dementia with project partners from Belgium, Germany, Ireland, Italy, Luxembourg, Netherlands, Sweden and the UK. The information in this report also refers to the overview provided by the European Transnational Alzheimer’s Study (ETAS Report), issued in September 1998 and funded by the European Commission, Directorate General V,
Employment, Industrial Relations and Social Affairs, Directorate of Public Health and Safety at Work.
This report is intended to provide a profile of dementia, its prevalence now and in the future, its economic and social impact, as well as an overview of national policies and care arrangements and recommendations for the future. The challenge facing Europe on the eve of the millennium lies in developing an interdisciplinary combination of medical, clinical, social, economic, governmental and personal approaches to those with dementia and their families. Our goals are to promote efforts to find communal solutions and interventions that preserve people’s humanity and functional independence and delay or prevent institutional care as long as possible.
Prevalence of Dementia
- Dementia, which may be caused by some 60 diseases, affects a significant proportion of the elderly. Alzheimer’s disease, accounts for half the cases of dementia, striking 1 in 20 over age 65. This is followed by Vascular dementia.
- Although dementia is not caused by ageing, nor is it an inevitable part of the ageing process, it is age-related. Between the ages of 60 and 95, the prevalence of dementia nearly doubles every five years.
- Population projections indicate that the number of elderly will increase significantly over the next 25 years with a corresponding decline in the working age population. In some countries, such as Germany and Italy, people over 65 will make up nearly one-quarter of the population within 20 years. The number of European elderly with dementia is expected to double by the mid-21st century.
Impact on Women
- Dementia is particularly difficult for women, mainly because they comprise a larger proportion of the ageing population. There are three women for every two men between the ages of 65 and 79, and thisratio increases with each decade. More than twice as many women are over 80.
- Older women are more likely to suffer from the dementia than men. Women are also most often designated as carers, both paid and unpaid, and are therefore more subject to the psycho-social stresses of caregiving.
- The disorder has a great financial impact on women. Caregiving responsibilities may take them out of the labour market or inhibit professional advancement; women are more vulnerable economically at the time they are most prone to the disease.
- Alzheimer’s disease, the most common of the dementias, is associated with a destruction of brain cells, which in turn is accompanied by loss in short- and long-term memory and other intellectual capabilities. Alzheimer’s disease is marked by the gradual loss of most functional skills and the inability to read, reason and communicate. The immune system deteriorates and the eventual outcome is death.
- There is no known cure for Alzheimer’s disease, but symptomatic treatments are being developed. Drugs designed to interfere with progression of the disease and to alleviate some symptoms are available, but they have been of limited benefit and only for short periods of time.
- The primary treatment for all dementias is non-pharmacological – the millions of caregivers, paid and unpaid; clinical and social services professionals; day and long-term care centre staff – who meet the needs of dementia patients.
Impact of Dementia
- The psychological, emotional, social and economic impact of dementia on patients and their families is incalculable. Social and communal lives are shattered. Carers themselves are at high risk for physical and mental health problems. A significant portion of the economic cost must be borne by the family. In addition to this, carers may have to give up employment or forego advancement. The hundreds of hours of unpaid care provided by families and volunteers each month is a major economic factor.
- Responsibility, provision of services and degree of support for carers varies greatly from country to country and even within countries. In most instances, families bear much of the burden.
- Equity may be assessed in the areas of access to services, degree of utilisation and quality. Issues that mitigate against equity are geographical, historical and socio-economic. In some countries, the needs of older persons receive less attention and fewer resources than those of younger persons.
- Member States vary greatly on legislation regarding the individual rights of people with dementia.Impact of Dementia
- It is estimated that more than two-thirds of dementia patients are cared for at home. The goal is to keep patients functional and delay institutionalisation as long as possible.
- The home’s physical environment changes as well. As the numbers of dementia patients grow, many Member States are offering support for carers.
- The demand for alternative and institutional care will grow significantly as the population ages. Less home-based family support is available than in previous generations because of changes in family structure. Many older people, divorced or never married, live alone. Family sizes are smaller, and traditional family relationships are not as strong as in the past.
- Voluntary bodies, such as national Alzheimer’s Disease Societies, perform a valuable information function and can play an important role in easing the burden of care.
- Many of the public services used by carers are provided by a variety of agencies. The abiding picture is one of fragmentation between social services (day care, respite relief), medical services (GPs, public health nurses), and financing arrangements.
- Despite their prevalence, Alzheimer’s disease and other dementias are still not well known or understood. Although most primary care physicians are able to diagnose the disease in the moderate state, it is still very difficult to detect mild/early dementia, hence that treatment and support may be delayed. Families may be reluctant to ask for help, professionals may offer the wrong kind of help and services may be difficult to access. As a result, there is a growing need for such professionals as geriatric specialists, dementia nurses and continuing care co-ordinators.
- When around-the-clock home care is not an option, some countries have community-based facilities such as day care centres, group homes (such as the French Cantou, the English Domus, and the Swedish Group Living), or Special Care Units for dementia patients in hospitals and nursing homes.