VARIABLES

Kitwood (1997) suggested that the needs of individuals living with dementia do not change but instead become more important in light of cognitive deterioration. In addition to love, Kitwood (1997) suggested there are five areas of need including: attachment, comfort, inclusion, occupation and identity which should ideally be met within dementia care. The findings of the current study demonstrate that some of the participants expressed thoughts similar to the areas of need suggested by Kitwood (1997). The current study developed the subtheme ‘‘attachment behaviour’’ where some of the participants appeared to reminisce and talk about past relationships, family members or locations where they previously lived which were not always prompted by the researcher. This may have been a self-soothing strategy

71

which enabled the participants living with dementia to feel comforted in times of isolation and insecurity through the reminiscence of attachments. This reflects research about the importance of attachments in dementia (Browne & Shlosberg, 2005). Kitwood (1997) suggests that for those living with dementia, feelings of isolation and insecurity were more frequent due to memory loss, disorientation and language difficulties. In terms of comfort, a number of participants described close and loving relationships with their spouse and this is perhaps reflected in subthemes such as ‘‘support from others as a positive experience’’ and ‘‘reciprocal relationships’’ where participants expressed feeling supported and cared for as well as the continuation of meaningful and reciprocal relationships. Perhaps for the subtheme ‘‘support received as a less positive experience’’ the support and care provided may have been perceived as inappropriate by the care recipient with the ideas about care from the caregiver being projected on to the care recipient (Wiles, 2011). It would seem that when support was not experienced in this way, the participants did not feel comforted. The importance of inclusion was also demonstrated in the current study. Some participants spoke about identification with peers; finding acceptance and comfort with the ability to be oneself and not worrying about the symptoms of dementia, for example Ted talked about: ‘‘When I’m with the group I can be just myself, er, not having to think about things as much cause you are just talking and, erm, and but forgetting is, is so easy.’’ A sense of occupation and keeping busy appeared helpful for the participants in the current study who demonstrated a need for agency and being active in relationships and with family. The importance of occupation was also referred to with continuation of hobbies. Furthermore, participants talked about maintaining their identity; it was important that they had a continued role of looking after others and maintaining activities that were once hobbies and enjoyable. Some

72

participants demonstrated that they still had the same worries and concerns which could have reflected an attempt to retain their identity.

Building on the work of Kitwood (1997) some research has highlighted the impact of loss of those living with dementia (Harris & Keady, 2004). The experience of loss may risk the maintenance of personhood, and therefore identifying and understanding loss from the perspective of the individual with dementia is important. Harris and Keady (2004) found that participants reported a sense of loss in terms of their abilities and skills which started to deteriorate following their diagnosis of dementia. Furthermore, the authors found that individuals started to feel separated from the world around them, finding communication and involvement in meaningful activities more challenging (Harris & Keady, 2004). These findings were also reflected in the current study where participants reported primary losses (i.e., losses of skills and abilities as a result of the impact of dementia) and secondary losses (i.e., loss of self-esteem and confidence due to the experienced primary losses). Perhaps the impact of secondary losses reported in the current study could lead to participants feeling separate as reported in the findings from Harris and Keady, (2004) which may prove a threat for the maintenance of personhood.

Despite the experience of loss, Clare, Roth, and Pratt (2005) reported that individuals living with dementia find ways to compensate and adjust to the losses caused by dementia. Such methods included psychological strategies such as trying to stay positive and taking one day at a time (Clare et al., 2005). Perhaps when the participants demonstrated ways of adjusting to the losses brought about by dementia, this was perhaps indicative of participants independently trying to maintain a sense of personhood. Adjustment methods were also reflected in the findings of the current study. Most participants talked about ways in which they tried to cope with the effects caused by the dementia. For example, like the findings by

73

Clare et al. (2005) Ted also talked about taking things one step at a time: ‘‘I’ve just got to take it in step by step then I can do it at times’’ and practical strategies such as organisation were discussed by Alice: ‘‘Well, I don’t sit worrying about it. I, as I say, I’ve, I can cope with what I’m doing, and things are fairly well organised, so that things look after themselves.’’ Furthermore, adding to the results reported by Clare et al. (2005) findings from the current study illustrated that coping through social comparison was useful. The participants’ comparisons of themselves to others whom they perceived as having a worse experience of dementia, seemed to assist adjustment. For example: ‘‘So long as I think, so long as I’m not like some poor devils are in the world, who you know, who erm, you see elderly people who are crippled, who saliva’s coming out of the mouths and they don't know what day of the week it is, they don't know where they are’’ (Jim). Similar findings were also reported by Byrne-Davis, Bennet, and Wilcock (2006), who suggested that the conceptualisation of QOL can be influenced by social comparisons and is a coping strategy used by those living with dementia.