THE PSYCHOLOGICAL IMPACTS OF NOSTALGIA FOR PEOPLE WITH DEMENTIA: STUDY PROTOCOL
1.0 INTRODUCTION
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1.1.2 Existential realities
Four basic concerns that have been proposed to have great impact on the lives of all people are: death, freedom, existential isolation and meaninglessness (Yalom, 1980). Yalom (1980) argues that although people tend to neglect these four realities, they are still pervasive and influential on our lives. He offers the following explanations to these realities which he refers to as ultimate concerns. He explains that the inevitability of death is a fact of life which we are all aware of; irrespective of the fundamental human desire of existence. The central existential conflict is the strain between the realisation of the inevitability of death and the desire to continue to live. From an existential perspective, freedom refers to the lack of external structure. Paradoxical to an individual’s everyday experience, human beings do not reside in a universe that has ingrained design and is well-structured. Instead, the individual is totally the orchestrator of his or her own choices, world, actions and design. Freedom from this view implies terrifically that there is no ground beneath us. The key existential dynamic in this sense is the conflict between our encounter with groundlessness and our desire for ground and structure. As humans, our reality of freedom is evidenced from the conflict which arises from our aspiration of self-determination and our realisation of lack of support and uncertainty. This happens when one recognises the things that happen in one’s life are up to oneself.
The third ultimate concern is isolation. This form of isolation from an existential sense does relate to neither interpersonal isolation (such as loneliness) nor intrapersonal isolation (such as isolation from oneself). This form of isolation refers to fundamental isolation. This means that no matter how close we are to each other, unavoidably, we are on our own. Each of us comes into existence alone and must exit from it alone. Thus, the existential conflict is the strain between our realisation of our absolute isolation and our desire for contact, protection and to be part of a larger group (Yalom, 1980).
Accumulation of the three realities results in the fourth, which is, meaninglessness. In a world where there is no absolute truth and the only certainty about life is death, life tends to be meaningless. People will cling unto values and concepts in an effort to formulate meaning in life. Life essentially has no meaning if death is inevitable; if our own world is constituted by ourselves and if we are fundamentally isolated (Yalom, 1980). As Yalom (1980) elaborated, the existential dynamic conflict emerges from the impasse of a meaning-seeking creature that is put into a universe that possesses no meaning. It can be argued that although these existential realities are experienced by all human beings in one form or the other, some categories of persons are more likely to experience profound aspects of these existential threats. One of such groups of people is people with dementia.
1.1.3 Dementia: an existential threat
“Dementia is an existential plight of persons and not simply a problem to be investigated and managed through technical skill” (Baldwin and Capstick, 2007; p. 117). It has been regarded as a disease of the entire person rather than a mere illness of the brain (Murray and Boyd, 2009, Passmore, Ho and Gallagher, 2012, Post, 2013, Nowell, Thornton and Simpson, 2013). With its associated health and social problems and deterioration leading to death, dementia can be perceived as a form of existential threat (Cheston, 2011). People with dementia experience changes in biographical factors. These biographical factors are the changes in later life. Whereas some people with dementia go through their illness with most of the mechanisms that previously supported them still unblemished, others go through a sequence of diminishing and disheartening changes in life with massive decline in their personal resources. Such personal resources refer to that which has been inherently developed by the person including all the consequences of social learning. These include aspects such as ways of managing crisis, loss and modifications; willingness to accept help offered by others and defense against tension or anxiety (Kitwood, 1993). Social psychological factors that make up the fabric of everyday life could enhance or diminish the sense of value, safety and personal being of the person with dementia. These have been enumerated and framed under the purview of a ‘malignant social psychology’ (Kitwood, 1990; p. 180). These include treachery, disempowerment, infantilisation, condemnation, intimidation, stigmatisation, outpacing, invalidation, banishment and objectification (Kitwood, 1990, Kitwood, 1993).
Dementia as an existential threat denies a smooth adjustment into the existing self-concept of the person affected by dementia (Cheston, 2013). Cheston (2011) also argues that the threatened loss of cognitive ability for people with dementia could influence the way in which they make sense of the world and their self-esteem. He further expounds that existential realities are more prominent for people affected by dementia and can be evidenced in the subjective experiences of people with dementia. People with dementia seek for attachment (Piiparinen and Whitlatch, 2011, Van Assche et al, 2013, Osborne, Stokes and Simpson, 2010, Browne and Shlosberg, 2006, Perren et al, 2007, Stephens, Cheston and Gleeson, 2013), meaning/ purpose in life (MacKinlay and Trevitt, 2010, McGovern, 2011, McGovern, 2012, Phinney, 2011) and experience loss of identity (Eustache et al, 2013, Steeman et al, 2013, Caddell and Clare, 2012, Caddell and Clare, 2011). These could be perceived as coping mechanisms to buffer them against their encounter with existential realities.
It is suggested that existential threats could have adverse effects on an individual’s self- esteem (Sabat, 2002); affect (Xu and Brucks, 2011, Van and Van, 2007); social connectedness (Mikulincer, Florian and Hirschberger, 2003); meaning in life (Sullivan, Landau and Kay, 2012, Jaarsma et al, 2007); and general wellbeing (Piiparinen and Whitlatch, 2011). Likewise, it can be argued that dementia as an existential threat has similar potential effects on people with such a condition (Baldwin and Capstick, 2007). In addition, various studies have suggested that the early stages of dementia, after receiving a diagnosis, generally cause profound psychological effects on self-esteem, meaning/ purpose in life and general psychological wellbeing (Chistopolskaya and Enikolopov, 2013, Bamford et al, 2004, Steeman et al, 2006, Husband, 1999, Husband, 2000, Vernooij-Dassen et al, 2006).
1.2 Problem statement
Dementia as an existential threat has associated adverse psychological impacts for people with dementia. These include but are not limited to threats to identity Steeman et al, 2006), social connectedness (Hatch, 2013), meaning/ purpose in life (Lingler et al, 2006, Macquarrie, 2005) and general psychological wellbeing (Piiparinen and Whitlatch, 2011). Consequently, people with dementia sometimes use the recall of the past as a mechanism in an attempt to buffer the psychological effects of dementia (Bohlmeijer, Smit and Cuijpers, 2003, Woods et al, 2005). Also, conventional approaches such as reminiscence and life review activities employ the use of the past as a resource for the present to provide various psychological functions for people with dementia. However, the efficacies of these activities are still debated (Douglas, James and Ballard, 2004). For example, whereas some randomised controlled trials and systematic reviews conclude that these approaches may improve the psychological wellbeing of people with dementia (Lai, Chi and Kayser-Jones, 2004, Wang, 2007, Sharif et al, 2010, Wu, 2011, Azcurra, 2012, Korte et al, 2012), others have concluded otherwise (Wang, Hsu and Cheng, 2005, Wang, Yen and OuYang, 2009, Gudex et al, 2010, Forsman, Schierenbeck and Wahlbeck, 2011, Woods et al, 2005, Woods et al, 2012). Stemming from memory decline in dementia, the merging of past experiences with the present can arguably enhance self-concept and self-esteem if the images of the past stimulate a sense of pleasure and accomplishment (Kasl-Godley and Gatz, 2000). Perhaps, the recall of the past without deliberately evoking nostalgia is not an ideal way to effectively enhance and improve the psychological equanimity of people with dementia.
On the other hand, nostalgia has been proposed as a psychological buffer against existential threats (Juhl et al, 2010, Routledge et al, 2008). Juhl et al (2010) show that in mortality salience conditions, participants at low levels of nostalgia proneness show less positive responses to an identity threat, greater levels of death anxiety and lesser feelings of state nostalgia (self-esteem, social connectedness, meaning in life and affect). Routledge et al (2008) support the idea that nostalgia provides an existential function by providing a source of meaningful life experiences which people use to defend themselves against concerns about death (existential threat). Also, experimental studies with undergraduate student populations have demonstrated that induced nostalgia increases self-esteem, positive affect, social connectedness and meaning in life when compared to normal autobiographical memories (Wildschut et al, 2006, Routledge et al, 2011). However, the use of nostalgia by people with dementia to provide similar desirable psychological functions is not clear (Moos and Bjorn, 2006). Nonetheless, this has not been tested among people with dementia.
1.6 Significance of the research
The current research seeks to investigate whether induced nostalgia increases self-esteem, meaning/ purpose in life and social connectedness for people with dementia as it does for the general population. It also attempts to find out whether people with mild to moderate dementia differ in experiencing various psychological outcomes as a result of their degree of nostalgia proneness. This novel application of the emotion of nostalgia (currently a major area of psychological research) to people with dementia has both clinical and theoretical significance. Theoretically, with nostalgia being suggested to have positive psychological impact among the general population, we will be able to find out whether these functions extend to people with dementia. Clinically, while reminiscence therapy is frequently used with people with dementia; research findings are unclear as to whether this has any benefit. It may be that one of the factors determining whether reminiscence is of benefit is whether or not a nostalgic memory is evoked. By investigating this, the research may be able to shed light on the way in which nostalgia buffers the psychological challenges of living with dementia. For instance, we may be able to identify more precisely how to help people with dementia maintain a psychological equilibrium, and thereby improve their quality of life and psychological wellbeing.
2.0 PRELIMINARY LITERATURE REVIEW
2.1 Dementia and meaning/ purpose in life
Existential psychology attempts to explain the way individuals formulate meaning in the event of an inevitable despair or threat. According to existential psychology, individuals employ various mechanisms to buffer them against existential threats in order to restore psychological balance (Greenberg, Koole and Pyszczynski, 2013). Purpose in life is an aspect of wellbeing that is well appreciated by people with dementia (Droes et al, 2006). Research shows that, even in the event of experiencing decline in cognition in a patient with dementia, the person with dementia still engages in meaning-making that covey important communication messages regarding the importance of life (Robertson, 2013). Also, people affected by dementia are usually in the quest of seeking for meaning in their lives in order to concur with their diagnosis (Lingler et al, 2006, Macquarrie, 2005). Searching for meaning in life by people with dementia is linked to the expression of establishing identity (Steeman et al, 2006).
Dementia is associated with various levels of cognitive decline (Franciotti et al, 2013). Cognitive decline has been found to be associated with decline in aspects of wellbeing, specifically, purpose in life (Wilson et al, 2013). Alternatively, in advanced age, higher purpose in life causes a reduction in the effect of pathologic changes on cognitive decline for people with Alzheimer’s disease (Boyle et al, 2012). Longitudinal studies have also provided some evidence in support of some existential functions of having a greater purpose in life. Among older adults living in the community, greater purpose in life has been found to have significant associations with a reduction in risk of disability (Boyle, Buchman and Bennett, 2010), mortality (Boyle et al, 2009), Alzheimer’s disease and mild cognitive impairment (Geda, 2010, Boyle et al, 2010).
