Good practice

Before considering such interventions I return to my own stance that an ethical, effective and respectful approach requires efforts to keep the person fully informed. It was difficult to establish from the referring clinicians exactly what the women had been told about their diagnosis prior to the interviews. Five carers reported that they had not been informed of the woman’s diagnosis by the clinic; some had guessed or found out by other means. This appears to be indicative of a culture where there is little open communication between the women, their relatives and professionals.

This echoes findings of previous studies (Clare, in press; Clarke and Keady, 1996; Husband, 1999). For example, Clarke and Keady (1996) also reported that some of their participants and their carers did not know about the diagnosis, which tended to be referred to as ‘memory problems’. It is likely that older people with dementia will be more inclined to accept memory problems as part of normal ageing, which may account for the finding by Husband (1999) that doctors were more likely to inform younger people of their Alzheimer’s disease diagnosis. Similar to this study. Husband (1999) also found that only a minority of carers were given an opportunity to discuss the issues involved with a professional and younger carers were more likely to feel that such an opportunity would have been useful. In their autobiographical accounts, Davis (1989) and McGowin (1993) also felt they lacked information and support. They expressed their concern about the length of time it took to establish a diagnosis and being kept in the dark about the outcome of assessments.

It may be useful here to review how some of these issues related to the women in this study. In reviewing Emma’s medical file I noted that a diagnosis of probable Alzheimer’s disease had been made. However, there was no record in the file of Emma having been informed of her diagnosis. Upon interviewing Emma and her partner Harry, they expressed their concern and anger that they were still waiting to hear what the diagnosis was seven months after the assessment. In the absence of a diagnosis they were both left to find their own explanation for Emma’s difficulties. She was aware she had memory problems, but could not account for this other than in terms of old age. After the interview Harry commented that he wondered whether Emma had “that condition that the famous woman author had; the one they made the film about”. He was particularly concerned because he thought she had deteriorated further since the assessment, highlighting how such delays effectively deny a person treatment. It is of some concern that this experience may not be uncommon, as Brenda and her daughter told an almost identical story.

Fiona did not appear to have been told that she had Alzheimer’s disease either. In the absence of a diagnosis she looked for an explanation for her memory problems in terms of a fall on the ice in her 50s. Fiona looked to medication to alleviate her condition, which came out as a main theme in her account and was confirmed by her daughter. Aricept seemed to have had a positive effect. For me personally, treating somebody without sharing a diagnosis raises real ethical issues about informed consent. However, her daughter thought her mother would worry more and get depressed if she knew she had Alzheimer’s disease. The daughter had never been told about the diagnosis either, but saw it written in her mother’s notes on the G P’s computer screen. She did not necessarily disagree with the diagnosis being withheld from her mother, but thought that she as carer should have been told. Again this raises ethical issues about whether a carer may be informed of a

diagnosis without the patient’s consent, as well as issues about allowing someone to find out a diagnosis without giving them support and information.

Gill’s daughter suspected her mother had Alzheimer’s disease, but was unsure, as the doctor had not talked about it. In the absence of professional support and information the daughter relied on media reports about the benefits of chewing gum and drinking coffee in the hope that this might help. She tried to get her mother to do crosswords to stimulate her mind, although she knew her mother disliked doing them.

What these accounts show is that there are gaps in good practice in terms of keeping people informed about the assessment procedure and the provision of accurate information about the diagnosis, treatment and available support. Reflecting on my experience as a health adviser and counsellor in sexual health, I would argue that there are real advantages in providing pre-assessment counselling or discussions to provide accurate information about dementia and the available treatment and support, and to provide an overview of what the assessment will involve, possible outcomes and how a diagnosis will be given. This will allow people to make an informed decision as to whether they wish to have a neuropsychological assessment, whether they wish to know the diagnosis and with whom they would like this information to be shared. My own experience has shown the importance of backing up good practice with keeping accurate records of decisions, providing clear written information and offering post-diagnosis counselling. Husband (2000) supports the view that it is important to provide counselling at the time of receiving a diagnosis of dementia.

The difference with the HIV model of informed consent is the question of the extent to which people with cognitive impairment are able to take part in the process.

Gaining informed consent is a process that requires the person to be fully informed, consent being given freely and willingly, and that the person is competent. People with early-stage dementia will generally be able to understand and give consent if the procedures are flexible and allow adequate time for the repetition of information. A lack of competence cannot be assumed just because a person has dementia. It is the responsibility of the clinician to assess competence and determine whether it is in the person's best interest for carers to be involved. There appears to be a growing consensus that people with early-stage dementia have the right to be informed of about their diagnosis even if this goes against the wishes of the family (Maguire et al., 1996; Rice & Warner, 1994)