Reflecting on the limitations of the study, five areas are identified for discussion: the appropriateness of the Mini-Mental State Examination to determine mild cognitive impairment; the extent to which the sample may be seen as representative of women’s with early-stage Alzheimer’s disease; the way the study was presented to the women; the influence of the structure of the interview schedules in eliciting certain responses; and possible motivations for the way the women presented themselves.
The use of the Mini-Mental State Examination in the inclusion criteria.
A Mini-Mental State Examination (MMSE: Folstein et al., 1975) score of eighteen or above determined the criterion of early-stage cognitive impairment. Although some studies have shown it to be a valid and reliable screening measure to detect cognitive impairment in older people (Braekus, Laake & Engedal, 1992), it does have a number of limitations. It has been criticised for combining items that assess different areas of cognitive functioning (e.g. memory, concentration, praxis) into a single score. Identical scores may therefore obscure wide variation in cognitive profile.
The MMSE is both educationally and culturally loaded. Those with a below average education may score poorly, despite being unimpaired. Those with a high level of education may maintain high scores despite actual cognitive decline. This is a common difficulty of brief screening measures, but the MMSE is particularly susceptible to this effect (Christensen & Jorm, 1992; Orrell etal., 1992; Tombaugh & McIntyre, 1992). In this study the lowest MMSE score was obtained from Brenda who was not born in the UK and had received the least number of years of formal education. Emma, with a first class university degree, provided the highest score in this study.
Of interest is that Emma’s partner rated her as the least independent on the Bristol Activities of Daily Living Scale (BADLS: Bucks at a!., 1996), although she had the highest MMSE score. Harborne, Walker and Clare (2003) report poor correlations between cognitive and functional measures. This concurs with the dialectical model of Alzheimer’s disease (Kitwood, 1997) where functional impairment is interpreted in terms of the interaction between neurological, psychosocial and environmental factors.
A practice effect may also inflate a person’s MMSE score. It is commonly used as an efficacy measure for acetylcholinesterase-inhibitor medication in Alzheimer’s disease. Apart form Brenda and Emma, all the rest of the women were receiving this treatment and would regularly be given the MMSE. Their scores may therefore give an inflated picture of their actual cognitive abilities.
Nevertheless, the advantage of using the MMSE in this study is that is allows for some comparison to be made with a previous study of men with early-stage Alzheimer’s disease. As can be seen from Table 5, the men and women in the two studies had a very similar profile in terms of their MMSE scores.
The representativeness of the sample
The extent to which the participants were representative of women with early-stage Alzheimer’s disease is perhaps less of an issue, as qualitative research does not necessarily aim at generalisability. The tentative relationships between the elements of the Level of Connectedness Model may be investigated further using quantitative research designs as discussed below.
Nevertheless it is worth speculating on certain idiosyncrasies in the sample. The women were recruited from specialist services for people with memory problems. It is likely that an expectation of memory decline in ageing will mean that a large number of people with early-stage Alzheimer’s disease will not be in contact with services. The women were asked how they came to be referred to their local service. Although most of the women could not remember, carers indicated that referrals were often initiated by GPs as the women presented with other health complaints. One daughter specifically mentioned that she had asked her mother’s GP for a referral to the memory clinic because she had read about drug treatments.
A particular concern as regards the representativeness of the sample is the large number of potential participants who declined to take part in the study (70%). This is exceptionally high and a common reason given was they had already taken part in other research. The carers acted as gatekeepers. Invariably it was the carer who responded to my telephone call and decided whether or not to arrange an informal meeting. One daughter commented that her mother had become distressed in a previous research study. Other husbands and daughters feared that the experience would be unsettling. Significantly, several carers declined to take part because they or the women were not ‘coping’. In other words, it is likely that the women who had the most difficulties coping were the least likely to take part in research.
This study did not seek to recruit a homogeneous sample as regards ethnic or social-economic variables. The social diversity of the women added to the richness of the data and contributed to the study’s ecological validity, because the majority of the women lived in multi-cultural inner-city neighbourhoods. It should be recognised that cultural factors will have an influence on illness representations and coping styles. In this study seven of the women were British, one Irish and one Southern European. Cultural differences may account for the Southern European woman identifying the absence of her extended family as a particular loss and the Irish Catholic woman’s emphasis of the importance of her religion.
The presentation of the studv as ‘coping with memorv problems’.
The study was introduced to the women as an investigation of ‘How do older women cope with memory problems?’ The reason for not using the term Alzheimer’s disease was that it was rightly anticipated that not all the women had been informed of their diagnosis. It was also thought that it was possible that some women might disagree with the diagnosis. The aim was to the use the women’s own definition of their difficulties. The difficulty is that framing the research question in terms of memory problems may have encouraged the women to appraise their difficulties as normal.
My own stance that the women had a right to be informed of their diagnosis conflicts with this approach. I believe it colluded with the stigmatisation of the diagnosis and may have contributed to the avoidance themes. However, as a researcher it would also have been ethically wrong for me to inform the participants of their diagnosis. During initial telephone contacts with carers, some specifically voiced concerns and needed to be reassured that the label Alzheimer’s disease would not be imposed. By contrast, one CRN declined to refer any participants because she felt the approach ethically wrong. Even with assurances that the term Alzheimer’s disease
would be used if the women themselves referred to their difficulties as such, she felt that introducing the study as an investigation of memory problems stigmatised the diagnosis. My personal preference would have been to only recruit women who were open about their diagnosis, but this would have severely hampered an already difficult recruitment process. It would also have produced a different ‘unrepresentative’ sample. The strength of the approach that was used is that it accessed a group that reflects the more usual situation as currently found.
The influence of the structure of the interview schedules
The interviews commenced with questions about the women’s past before going on to explore their appraisal of their memory problems and how they coped with their difficulties. Obtaining a biographical account was an important part of the study and it also served to create rapport. However, this structure had some unanticipated effects. Most of the women had some difficulties in answering questions about their past and this could have caused them some embarrassment, influencing some of the themes relating to protective strategies.
Time constraints meant that questions about the women’s past made quite rapid leaps from childhood to adulthood. This had some curious effects, as some women seemed to have difficulty in switching between time frames. In Emma’s account I thought it was odd, for someone who was one of the first women graduates from a prestigious university, that she chose winning the hundred yards race at school when eleven years old as one of the things she was most proud of. I think this was a product of the previous questions that had orientated her to her childhood. By contrast her partner thought that Emma was most proud of her work as a successful publisher. The same effect may explain Anne’s ‘swimming’ response as discussed earlier.
When asked about a difficult moment in her life Hannah talked about being turned down for a job with the Air Ministry because of her political opinions. I assume she chose to talk about this because the interview had orientated her to that time. By contrast the husband thought his extra-marital affair would have been the most difficult moment in her life. It is unlikely that Hannah would have wanted to discuss this with me.
The women's presentation of self
The extent to which the women felt able to openly express their views about their difficulties is likely to have been influenced by the public self they wanted to display. The results show several examples of contradictions between the women presenting themselves as ‘alright’ and their carers accounts of them covering up their difficulties due to embarrassment and humiliation. Although the carers’ accounts make intuitive sense it should also be recognised that they do not hold a monopoly on the truth.
An important issue here is that the public self that the women displayed in the interviews was inexorably tied up with their perception of whom it was they were talking to. At times it appeared as if the women were uncertain about who I was or what I represented. During Anne’s interview she seemed uncertain as to whether I worked at the memory clinic. This may have made her cautious about talking about her memory difficulties. An example was her tone of voice when she said her memory was fine, which was very insistent.
Irene said she did not worry about anything and perhaps the clue here is in her words “I’m quite happy with things as they are”. Her daughter described how Irene was worried that I might be coming around to put her in a home. Although she told Irene not to be “silly”, perhaps the irony is that this was precisely my role as a social worker in the past, where I would visit elderly people to make a P3 residential
accommodation application. Thus from my perspective Irene's concerns were far from “silly”.
Brenda wished someone would help her with the verbal abuse she received from her son-in-law. As I left the house she thanked me and gave me a hug, which left me wondering who she thought I was and what she hoped I might do for her. Perhaps I did play the role she expected of me by informing the local psychology service about the situation.
Some of the women may have experienced the interview as an assessment of their memory. Gill, for example, gave the impression that she expected me to test her memory. I spent some time assuring her that this was not my intention. Nevertheless she still wondered whether some of my questions were intended to catch her out and this indicated that she felt the need to be on her guard.
Some of my questions caused the women some difficulty. Deirdre for example became apologetic about not being able to answer some questions and went on to tell me that she did remember other things. Given Deirdre’s daughter’s agenda of moving her mother into a home, Deirdre’s interjections during her daughter’s interview were mostly aimed at letting me know that she was capable of managing at home, which again points to her experiencing the interview as an assessment.
The interview process could have been improved by more general questions that externalise the context of memory problems. Killick and Allan (2001) describe the use of a photograph of an older person, which the interviewer identifies as a person with memory problems. The participant is then asked to consider what kind of difficulties this person might experience. The assumption is that the person’s responses will be based on her own experience of memory problems. By
externalising the issue the person may not necessarily experience a sense of personal embarrassment, which may free her up to give a more open account of the impact of memory problems.