AbstractThe aim of this study is to explore the lived experience of older people living with dementia and their family members. Exploring both perspectives of dementia can offer a deeper understanding into the lived experiences as they are equally important. There are many guidelines and policies that state what the standard of care, information and support should be for people affected by dementia, yet the literature suggests these resources are not satisfactory.
This study is qualitative and used descriptive phenomenology and life story work to explore participants’ journey with dementia. Ten older people with dementia participated in this study, along with 12 family members, who were all video recorded whilst sharing their stories of life both before and after a dementia diagnosis. All participants were given the opportunity to amend their video recordings which were then returned to the participants as keepsakes. The narratives were analysed through a bespoke analysis method combining Colaizzi’s (1978) descriptive phenomenology analysis framework and Burnard’s (1991) framework for analysing interview data.
For people with dementia, key themes were identity and resilience, whereby their changing cognitive and physical abilities result in changes to their sense of self. Regardless of this adversity, all participants try to remain positive and optimistic. The family members experience ongoing loss as their loved one’s condition deteriorates; despite this, they try to remain hopeful and make the best of their situation, but sometimes it can become overwhelming as they struggle to cope with the reality of living with dementia and the increasing responsibilities. All participants feel isolated from society as people will purposely avoid them or treat them differently. This segregation often results in them having to remain independent and deal with things alone as there is no one to turn to for support. For those with dementia, they desire social acceptance, which they often struggle to find outside of dementia support groups.
The contribution to new knowledge includes findings that are not supported by the literature, such as a couple’s intimate relationship diminishing as the dementia progresses and the reaction of family members to their loved one’s diagnosis. Furthermore, an original element of this study is the use of video recorded life stories as the data collection tool. Recommendations from this study include researchers using alternative methods of data collection to explore different elements of life with
dementia. Areas where education and additional funding may be beneficial are suggested to help those feeling isolated by dementia to remain mainstream members of society, with ample support networks.
|Date of Award||9 Apr 2021|
|Sponsors||Hafod Care, Aneurin Bevan University Health Board, Cwm Taff Morgannwg University Health Board & KESSII|
|Supervisor||Anne Fothergill (Supervisor), Rachel Iredale (Supervisor) & Philip Tyson (Supervisor)|