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This study revealed two areas of difference between couples that appeared to influence their response to a diagnosis of dementia: how they made sense of what was happening to the person with dementia, and how they adjusted to and coped with living together with one partner having memory problems. These two differences may be important areas to examine in future studies. Firstly, this study revealed a difference between couples who had received a university education and those who had not, which suggested that a couple’s educational background influenced their explanations and knowledge about dementia in the early stages. This difference needs to be explored in future research as it was unclear whether the variation between couples who had attended university was due to their education or their socio­ economic status. Further research could explore this issue and examine the implications at a social level for couples and others in the early stages of dementia. Studies could examine whether a university education influences a couple’s motivation to access services and other resources to find out more about what is happening in the early stages of dementia as well as exploring differences between couples fi’om differing socio-economic backgrounds in the strategies they use to make sense of and adjust to the losses in early stage dementia.

Secondly, this study revealed that couples could be categorised on the basis of the partner’s interaction style with the person with dementia. It is interesting to consider what it is that makes couples fall into one or other category. Couples were fairly consistently described on the basis of one category, which has implications for couples who live in the community with a partner with dementia who interact using a more negative style. It is possible that which interaction style dominates is

C hapter fou r: D iscussion - M aking sense a n d adju stin g to loss

predetermined to an extent due to pre-exiting styles within a couple’s relationship. Alternatively, couples’ interaction styles may change in response to the onset of dementia and receiving a diagnosis.

The interaction styles exhibited by couples in the early stages of dementia, and how a diagnosis o f dementia influences social interactions between people with early- stage dementia and their partner, are important areas for further research. Future studies which include a more fine-grained analysis of the social interactions within couples, may reveal variations on a continuum between the two categories of negative and positive styles of interaction presented here. Future research could also draw on marital literature studies to explore the interaction styles exhibited by couples in the early stages of dementia and examine the extent to which the interaction styles are situation specific or a long-standing pattern of interaction.

This study further revealed a difference between people with dementia and their partner in their willingness to receive a diagnosis or dementia and how useful they found the information given about the diagnosis. These variations between people with dementia and their partners may also need to be explored in future studies. As described above, there may be many explanations for this difference between partners and people with dementia, perhaps due to differences in the retention of information or due to the increased threat to self for people with dementia. Exploring these two explanations in more detail may help clinicians, firstly to consider how people with dementia can be assisted to retain the information given about their diagnosis and secondly to consider the rights of people with dementia to be told about their diagnosis in a way that maintains a more positive view of self.

Finally, as mentioned, this study examined a subgroup of people who had received a diagnosis of dementia and more research is needed to examine

C h apter four: D iscu ssion - M aking sense a n d adju stin g to loss

psychological reactions to a diagnosis of dementia in a wider range of people. Future research could explore the usefulness of the proposed model, which is based on the experience of couples, for understanding how people with dementia living with same sex partners and/or other friends and family members respond to the diagnosis. Future research could further examine differences between men and women with dementia who receive a diagnosis or differences between people who receive a diagnosis of Alzheimer’s disease or vascular dementia or people from a variety of ethnic backgrounds.

Alternatively, a longitudinal research design could be utilised to examine psychological reactions to a diagnosis of dementia in couples over time, both before and after the formal diagnosis is received, as many participants found it difiRcult to recall events retrospectively. Such research could examine whether the cyclical and oscillating processes of making sense and adjusting to the early changes in the person with dementia continue over time and could track how other life events impact on making sense of a diagnosis of dementia for couples. Future studies could also attempt to focus on people who have not yet received a diagnosis, or are waiting to hear the results from their medical and psychological assessment of dementia to find out more about couples’ experiences at this point in the process of receiving a diagnosis of dementia.