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Relatives of persons suffering from dementia: differences in the burden
- Author:
- DUIJNSTEE Mia S.H.
- Journal article citation:
- Ageing and Society, 14(4), December 1994, pp.499-519.
- Publisher:
- Cambridge University Press
Partners and children play a key role in home care for persons suffering from dementia. When the burdens are compared they are placed on these relatives, there are large differences. On the one hand, these result from actual differences in the care situation. On the other, they arise from the differences in the way the people involved experience more or less comparable circumstances. To determine the sources of the differences in the burden on the relatives, a distinction was made between objective and subjective care-giver burden. Qualitative research, therefore, aimed to provide an understanding of the personal interpretation by the people involved. This was realised in about 40 case studies involving relatives.
Continuation of caregiving among partners who give total care to spouses with multiple sclerosis
- Authors:
- BOEIJE Hennie R., DUIJNSTEE Mia S.H., GRYPDONCK Maria H.F.
- Journal article citation:
- Health and Social Care in the Community, 11(3), May 2003, pp.242-252.
- Publisher:
- Wiley
Addresses the total care phase in which spouses give direct and ongoing personal care to their partners with multiple sclerosis (MS). The dyadic nature of caregiving is stressed by examining the roles which both spouses play in establishing a commitment that results in the continuation of caregiving. For this purpose, 17 couples facing MS were selected in the Netherlands and Belgium. Ten females and 7 males were disabled, all living with partners who provided a full range of care. Both partners were interviewed separately about their motivation to give care, dependency on help, the continuation of caregiving and their relationship. The analysis consisted of fragmenting and connecting the data and involved close reading and constant comparison. The findings support previous studies: continuation of caregiving is the result of an interchange between the partners. The commitment established can be expressed in terms of inevitability, shared misfortune, reciprocity and the desire to prevent admission to a nursing home. Three aspects appear to contribute to the creation of commitment and the ensuing continuation of caregiving: marital loyalty, the arbitrariness of the disease, and its serious nature. For community care it is important to consider the negotiations between partners and the impact of caregiving on their relationship.