Researching the social aspects of dementia from a social work perspective

Abstract

The issues associated with dementia are challenging for social workers, who have a lot of direct contact with people with dementia, as well as their support networks. These networks play a key role in the care of people with dementia. Social workers differ from other professionals in that they are aware of the urgency of attending to social justice, as well as the implementation of human rights, participation and equality. Recognising the experiences of people with dementia is of paramount relevance to social work, as it provides insight into their needs and the aptness of existing forms of assistance in responding to their needs. Through this approach, those working in social work strive to find new forms of help to enable people with dementia to live independently in their community. It is important to find ways to involve people with dementia as active co-creators in the helping process and in exploring the social perspectives of dementia. In the present paper, we present the literature review on experience of researching dementia from a social work perspective in Slovenia and Croatia—two countries with similarities in the development of social work and its research. The inclusion of people with Alzheimer's disease or dementia in research is very complex. Both professionals working with people with dementia (formal caregivers) and family members (mostly informal caregivers) face various difficulties and pressures. It is therefore important to consider research ethics and respect existing legal frameworks and informed consent. An individualised approach should be used to include people with dementia in research to meet their need for personal worth and dignity (despite numerous mental and functional deficits). Ultimately, all research should strive to determine the true situation of people with dementia and their needs, with the aim of using and developing their remaining abilities to improve the quality of life for both those people and those who provide care for them.