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The article by Dr Hughes and his colleagues (May 2002 JRSM1) is excellent. May we briefly record our own findings. Between 1 September 2001 and 1 March 2002 we (DS) conducted interviews about all aspects of care with the marriage partners of 37 people with dementia attending our memory clinic. The group consisted of 28 women and 9 men, mean age 80 years (range 67-86), mean duration of marriage 40 years (26-58). All participants gave written informed consent. The study was approved by the Medical Ethics Committee of the Erasmus Medical Centre.
The ethical dilemmas described by Hughes et al. were reported by the partners in our study. In addition, we found that these older carers saw a duty to continue caring for their demented spouse despite the considerable physical and psychological stress of doing so. Two-thirds reported that they felt pressurized by their children, who considered it normal that they should carry out this task. Moreover, the partners reported that the children were often against the initiation of care which could ease the burden for the partner, such as that involving home help, district nurse, day care or day treatment. The children were perceived to be taking the side of the person with dementia, failing to recognize and support the efforts of the partner—a cause of additional psychological stress. We also observed that ethical dilemmas were more stressful and burdensome when the quality of the marriage was described as poor.
We were surprised to find that, despite intensive medical and psychosocial counselling from the early stages of dementia onwards, most partners felt that they had not been able to foresee the consequences of the dementia process and the associated tasks. Asking our social worker for help or telephoning him was considered a betrayal. The partners indicated that there were many moments when they hoped for a phone call or home visit from the social worker, which they themselves did not want to initiate because it made them feel guilty—as if they were doing it ‘behind his back’. Feelings of guilt and betrayal arose especially in relation to decisions about stopping car-driving and about eventual placement in a psychogeriatric nursing home.
Our findings reinforce the message of Hughes and his colleagues—that professionals must be alert and sensitive to the ethical dilemmas faced by non-professional carers.