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Patterns of elderly spousal caregiving in dementia care: an observational study Aim. The aim of this study was to escribe which caring activities eight spouses performed when caring for a partner with dementia, and in what way these activities were carried out. Background. Family caregivers are recognized as being the primary source of care for the community’s older people. The largest group is comprised of spouses, with wives as the predominant caregivers. This informal care seems to be more or less invisible and performed in silence within the family. Despite the wealth of studies, the essence of family caregiving is not well understood. Methods. Data collection was conducted by observing the dyads in their homes. A qualitative approach inspired by grounded theory was chosen to discover qualities and describe patterns of spousal caregiving in dementia care. Results. The analysis yielded four broad themes, which included nine categories. Findings from the study shed some light on the invisible aspects besides the traditional hands-on caregiving. Conclusion. The elderly carers were engaged in demanding and time-consuming care ranging from supervision to heavy physical responsibility. They were caring for as well as about their partners. The study also showed that spouses were successful in managing their situation in different ways. The results reported in this article are unique as they come from direct observations in family home settings where a spouse cared for a partner with dementia. Knowledge about family caregiving is valuable for nurses as there is an emphasis on collaboration between family caregivers and professionals.

Home care for cognitively impaired elderly puts tremendous stress and burden on their families. Therefore it is important to search for effective care models in order to provide support for this group. In this study, an intervention model--the Circle Model--was developed, tested and evaluated in six places in Sweden. The model is unique in that family caregivers and volunteers were trained together in study circles. After their training, the volunteers replaced the caregivers in the homes on a regular basis, which permitted the caregivers some relief from the demands of caregiving. Interviews were conducted with the participants to gather information about their training and relief care experiences. The caregivers reported that the study circle provided opportunity to exchange experiences with other people in similar situations. They felt a spirit of community with other relatives, and were able to increase their knowledge in care providing and coping strategies. The emphasis in temporary relief care by the volunteers was placed on providing the relatives with feelings of security and relaxation. The satisfaction among the Circle Model participants was reciprocal. The volunteers also reported high satisfaction and appreciation of the knowledge which they acquired from the caregivers. The Circle Model brings new dimensions to the home care situation and should be seen as a complement to social services support.

The study focuses on adult children ( n = 81) having the main responsibility for parents with dementia (study group). They were compared with children ( n = 102) of non-demented parents (reference group). The children were interviewed about burden experienced. The interviews also secured information about the children's co-operation with the informal and formal network and their willingness to remain as caregivers during the progression of the disease or ageing process. The results showed that the daughters reported feeling more affection in their caregiving role than the sons. About one third of the participants in the study could not get relief from someone else. Eighty-nine per cent of the children in the study group and 76% of the children in the reference group were not willing to care for their parents in the family home during the progression of the disease, even if they were employed as caregivers.

Fifty-two caregivers for demented and 66 non-caregivers for non-demented elderly were investigated both within a gender and between genders. All participants were relatives and a burden questionnaire was used. The results showed that there was not always a difference between the caregivers for demented and the non-caregivers for non-demented elderly which may indicate that being a relative, even to a non-demented elderly, has obviously its own problems and importance. However, results showed more significant differences between female caregivers and female non-caregivers than between male caregivers and male non-caregivers, with females caring for a demented elderly suffering most strain. Their strain was exhibited by health problems, conflicts in the family, strained relations with family and others, a less positive outlook and limits in social support because of the caregiving situation. When investigating the group of male caregivers and male non-caregivers, it was found that males caring for a demented elderly person experienced a lack of positive outlook and a need for social support. The elderly person's residence in the group of caregivers for demented elderly people and in the group of non-caregivers for non-demented elderly people did not, however, appear to indicate any significant differences.