A suitcase of memories - a sensory ethnography of tourism and dementia with older people
thesisposted on 31.10.2019, 09:18 by Jane Mullins
The growth in the number of older people worldwide is dramatic and associated with this is an increase in the number of people in the UK with a diagnosis of dementia. It is estimated that by 2050, two million people in the UK will have a diagnosis of dementia (Alzheimer’s Society, 2017). The implications of this are huge in relation to health, wellbeing, social policy and the individuals affected. Dementia can be devastating and is associated with multiple losses for the affected person and their relationships. In addition to the loss of mental faculties, the loss of an individual’s social role and the threat to the sense of self impact on their relationships, overall lifestyle and their ability to contribute to society. People living with dementia are a marginalised group whose voices have often been ignored. However, since the 1990s, there has been a shift towards person-centred research, which involves listening to and involving people living with the condition. There has also been increased awareness of the impact of the dementia on those who not only have to provide care, but also cope with the emotional turmoil of the changing relationship with their partners.
Whilst quality of life research has examined the impact of reminiscence on the person living with dementia, there has been no study exploring the meaning and significance of tourism reminiscence for both the person living with the condition and their partner. This is concerning, as shared quality time has the potential to strengthen the relationship and understanding between partners. Evidence suggests that the better the relationship, the less likely it is that the person who has dementia and their partner are to experience depression. This influences the health and social needs of both, which may ultimately affect whether the person living with dementia is admitted to residential care or remains cared for at home. This research ‘listens’ to the stories of people living with moderate dementia and their partners to gain insight into the role that tourism and tourism memories can play in enhancing their lives and relationships.
The research was conducted in two phases, and each phase adopted process consent (Dewing, 2007) to ensure that full ethical consideration was given to the participants’ changes in mental capacity. During phase one, conversations using holiday photographs as prompts were held with five couples. The themes emerging from the conversations with the people living with dementia reflected on the past and the themes Memories as Embodied Experiences; Nostalgia and Holidays in Time and Place all focussed on the positive aspects of recalling holidays. In contrast, the conversations with their partners focussed on the present day and themes of Loss and Changing Roles and Relationships as well as the need for Dementia Friendly Holidays. The disparity of the results between the participants who had dementia and their partners and the challenges experienced in light of difficulties with communication shaped the second phase: A Suitcase of Memories. This is a holiday specific multisensory reminiscence focussing on one couple’s experience of recalling their shared holiday memories, culminating in the creation of a digital story. Such use of sensory ethnography has not been used in tourism before and provided rich insights into holidays as life. These are examined as ethnographic narratives that exemplify the experiences of the co-researchers alongside the identification of the themes of Holidays as Life; Freedom; View seen, viewpoint heard and Strengthened self-identity with younger self.
This study is the first to privilege the voice of those who have dementia and their partners in tourism research. It has provided indepth ethical and methodological explanations and recommendations for undertaking research with those affected by the condition and their partners in light of the challenges of researching with people who have diminished mental capacity, language skills and cognitive function. This research is also the first to use sensory ethnography as a research methodology in tourism scholarship and also recommends its use as a therapeutic tool to stimulate shared memories for couples affected by dementia. Finally, the study has developed a set of recommendations for service providers supporting people living with moderate dementia and their partners and for the wider tourism industry.
Thesis completed in 2018.