The growth of the number of persons with age related dementia, particularly Alzheimer’s disease, cause – and will increasingly – cause challenges related to the organization of care of persons with this disease; the economic costs for care will increase as well as the need to find and educate staff working in dementia care.
In a report from the Swedish National Board of Health it is estimated that around 148 000 persons have a age related dementia disease today. Roughly eight percent of everyone over 65 years of age have a dementia diagnosis, and almost half of all above the age of 90 years. The number of persons with dementia under 65 is roughly 8-9 000. Every year 24 000 people receive a diagnosis and roughly the same number of persons die every year from their disease. It is estimated that the numbers of persons with dementia will increase steeply after 2020 when the large number of persons born in 1940’s is coming to age.
The general awareness of dementias and the public discussion about the consequences of dementia since the 1980’s have basically changed the way people in general relate to dementias. To many people today dementia is no longer a necessary and natural consequence of becoming older. This has also meant that people become more aware of early signs of cognitive problems, like repeated memory lapses, and thus seek help. The health care organization has, for instance, started memory clinics as a way of helping and diagnosing people with early symptoms of dementia. This in turn has made the use of pharmacological treatment more common.
Hence a greater number of younger persons will get a dementia diagnosis and will live with this
diagnosis, at home, for many years, while care facilities will generally be reserved for persons in the later stages of dementia. This means, in conclusion, that the number of persons with an age related dementia diagnosis will increase the next decades and combined with the fact that persons receive a diagnosis earlier, implies that people will live longer with dementia in the community, often in the family.
Much of the research on age related dementia is of course medical, focusing on finding the causes of dementias and finding effective treatment strategies. Research in particularly nursing science has investigated and described various forms of care and care interventions as well as the consequences for next of kin when a person becomes afflicted by dementia Research in economics and epidemiology has focused on the projected development of dementia and the economic costs.
The fact that people with dementia will live longer and spend a not inconsiderable part of the time after a diagnosis living in the community, initially being quite active, most probably cared for by a spouse or adult child, give rise to new research needs and questions. It becomes of particular interest to increase our knowledge about the way persons with dementia themselves experience, cope and live with the progressing disease; their need of support and what kind of support they themselves request in order to be able to live a life as satisfactory as possible.
Age related dementia diseases are not only an economic and social political challenge but also a challenge to many of our basic ideas and notions of what it is to be a person in our society. Social and political citizenship for instance,
presupposes social actors that are able to take active part in public communication, able to reflect on information and to make informed decisions and take responsibility for their actions.
The same holds for everyday life in civil society and in the family realm. Basically, the traditional idea of a person stresses the cognitive abilities and pays less interest in social relations and the ability and willingness of others to take over failing cognitive, linguistic and social functions. As the number of persons living in the community with early symptoms of cognitive failures, or having an early or mid-stage dementia, increases, the basic notions and ways of coping with this disease will be challenged. The challenge age related dementias pose is of course important for the individual, but also for spouse, children, relatives and all others in the social network. But it has also wider implication in terms of the civil and political rights of the person with dementia, e.g. the right to make decisions about where to live, about care and ultimately about political issues.
The new challenges that people with dementia will pose in the coming years point to the need of social scientific and humanistic research on dementia. A number of new areas and questions will have to be both explored and discussed in order for social forms of care and public knowledge about dementia to be developed.
The research at CEDER is organized around a number of theoretical, empirical and methodological challenges that will be central for a cutting edge social scientific and humanistic research on age related dementia in the coming years.