DEMENTIA: AGENCY, PERSONHOOD AND EVERYDAY LIFE
The aim of the program Dementia: agency, personhood and everyday life was to contribute to social science and humanistic research about dementia and the consequences for individuals, relatives and society.

Background
The program ”Dementia: agency, personhood and everyday life” started from the fact that an increasing number of persons will live with a dementia diagnosis in Sweden. Today somewhere between 113 000 and 169 000 persons live with a dementia diagnosis; 2030 the number is expected to have grown to between 170 000 and 250 000 persons. Of all persons living with a dementia diagnosis about two thirds live at home, and a third in some kind of residential care. The majority of the persons living at home will at the end of the disease move to a residential care unit.
Our knowledge about everyday life with dementia outside the nursing home context is limited. We need more knowledge about communication and interaction in everyday life as well as the possibilities for persons with dementia to make their voice their heard.
The aim of the program has been to contribute to the new, emerging social science and humanistic research about dementia and its consequences for individuals, relatives and the society. The program identified three areas as being especially important:
 (1) The limits of personhood, especially how persons living with dementia are affected as citizens and especially in relation to social policy.
 (2) How identity and communication in interaction with family members and friends and carers is affected.
(3) How everyday life with dementia – from diagnosis to death – is affected, especially how persons with dementia can deal with everyday tasks.
Further, we have also been interested in the way ethno-cultural factors matters in all these areas.

Studying everyday life with dementia
Studying people living with dementia it is preferable done from an interdisciplinary perspective and using different kinds of methods. This allows studying social policy texts as well as social interaction and making interviews; using methods for text analysis as well as analyzing video and audio recordings. That is the reason the program involved researchers with different disciplinary background, from philosophy, to anthropology, psychology, linguistics, social work, political science and nursing.
The research team had a weekly seminar for six years and organized three international conferences around dementia, as well as workshops with international researchers. The program had extensive international contacts and collaborated with dementia researchers at Manchester university, UK, with researchers at other British universities, as well as with researchers and research groups in Finland, Denmark, Australia and the US.
The empirical material collected consisted of:
- national and local policy texts from the 1970s to present time;
- literary and philosophical descriptions and discussions about dementia;
 - video recorded observations of everyday situations at home as well as in nursing homes;
- video recorded interviews with persons that live with dementia and their significant others;
- interviews with staff at nursing homes, civil servants and local politicians;
- video recorded diagnostic conversations at geriatric clinics and assessment meetings at the social welfare offices;
- audio recordings from self-help groups for persons living with dementia.
In order to disseminate the research open lectures were organized every semester, open for staff in the local health care and social welfare organizations. Between 100-200 persons attended every time. A large number of lectures were presented to local nursing homes and dementia organizations and political groups over six the years.

Personhood and dementia
During the last decades dementia has often been the start for discussions about what is to be a human being, whether persons living with dementia lose their identity and self, or their personhood. These issues have been hotly discussed among philosophers in particular in relation to questions about autonomy and decision making. These issues are of relevance not only to academic researchers but also in several everyday situations that involve persons living with dementia. The reason is that these issues are about the practical implications for persons living with dementia, the relatives and professional carers; but also for policy makers and citizens in general.
Basically, the being-in-the-world of persons living with dementia change as a result of the progressing disorder. Persons living with dementia will experience, perceive and act in the world differently compared to previously, but also compared to other, healthy persons. That does not mean that the person with dementia will lose his or her subjectivity or identity – but that it will change. This means that both the person with dementia as well as his or her significant others will have to learn to live with a brain that constantly changes.
 
Dementia politics
Policy makers in Sweden have been late to develop policy programs specifically for persons living with dementia. In Swedish policy documents since the 1960s persons with dementia have primarily been defined in relation to their care needs, while they have never been defined as a group of citizens in need of for instance personal assistance in order to be able to live at home.
One possible explanation for this is the fact that persons living with dementia rarely if ever have been present in the public debate as it more often medical representatives or relatives that have defined what persons living dementia need. Thus, the voice of persons living with dementia has almost never been heard or articulated in the public discussion about social policy.

Self-help groups – articulating a voice
In the program we have been following one of the Swedish self-help groups run by people living with dementia over several years. This self-help group has established a local arena for people with dementia where they can meet and exchange experiences, share information, and knowledge about how to deal with representatives of the local elderly care. Thus, these persons articulate their own voice concerning what it is to live with dementia. One of the issues most hotly discussed is about the possibilities for and desire to decide about what kind of care they wanted as the disorder progressed. To the participants in the group this was very important as they knew they would not be able to make these decisions in the future. By writing down their wishes they wanted to pursue their autonomy and self-determination – something often regarded as obvious for healthy persons, but not for persons living with dementia.

Dementia and everyday life
One of the most important results from the research is that we have been able to clearly show that people with dementia not only can take part in collaborative activities even at mid-stage of the disorder, but also want to be part of joint activities. If people with dementia are provided active support their contributions will be facilitated. This is important knowledge because it has implications for how to learn to engage with people with dementia in various contexts, both at home and in residential care settings.
Persons living with dementia continue to be part of autobiographic storytelling situations. From our empirical material it is obvious that person with dementia want to position themselves as agents in the stories – irrespective whether they themselves or someone else actually tell the story. This is something to be expected given the phenomenological notion that identity and self are manifested in the being-in-the-world, for instance the relation to other people and to the surrounding world. Thus, although person with dementia are challenged in using verbal resources, they can still position themselves in stories as authors of their own lives.
As the dementia disorder progresses the person will be even more challenged in dealing with everyday tasks that used to be simple and natural. Some persons abstain from certain activities, while other modify their expectations or perform the task with other means.
In the program we had focus on what we called shared identities, that is, identities that for instance couples share. This shared identity is often manifested as a “we”. Spouses who have lived together for a long time, tend to refer to themselves as a ”we”, while they use the pronoun ”I” often to express disagreements. Thus, when one spouse receives a dementia diagnosis this will have implications for their shared identity.

Conclusions
We would like to point out some important conclusions and implications from our research.
 * We have shown that persons living with dementia are not represented though their own representatives in the public debate around dementia.
 * We have shown that much of the Swedish dementia policy is focused on formal care and not on support for a life at home and in the society.
* Our research show that the dementia policy about person that are not born in Sweden needs to be developed as the needs in this group of persons will increase sharply the coming years.
* Our research show that ethno-cultural groups are quite heterogeneous in terms of how dementia is perceived. We have found indications that the conception of family-based care is important in determining help seeking and the use of formal care.
* Our research show that a shared language between care staff and persons with dementia make communication easier.
* At the same time, our research show that it is the quality of relations that is important for the experience of quality of life.
* Our research indicates that there is a need to develop the competency in working with professional interpreters in medical contexts.
 * There is especially a need to develop knowledge about how cultural, linguistic and cognitive processes interact, and the need for tests and examination procedures that are culturally sensitive.
* Our research indicates that for those persons who will receive a dementia diagnosis and live together with a spouse, it is important to develop support and education that are directed at the couple rather than the individual spouses.
* It would also be possible to develop ”dementia schools” similar to school for cancer or depression.
* There are fairly simple ways to support and develop the interpersonal communication involving persons with dementia. This could be taught through special educational programs.
* Our research indicates that it is possible to use for instance ipads for supporting communication with persons with dementia.
* There is need to develop support for decision-making involving persons living with dementia.