Experiences and support needs of Veterans living with dementia

Abstract: Background: Despite an increased focus on dementia nationally and internationally little evidence exists on veteran experiences of dementia. Accounts of supporting veterans with dementia living in the community in the UK are particularly rare. Research about experiences of veterans with dementia in Taiwan and the US demonstrates the need for improved services and support to enable veterans to live well with dementia. In the UK there is a paucity of research about veterans’ experiences of living with dementia and the support they receive or would like to receive; a gap this study aims to help address. This study is the first UK based qualitative work that focuses on the everyday lived experiences of veterans with dementia who live in the community. Such experiences include veterans’ perceptions of the diagnostic process, of accessing support, and of the impact of having a diagnosis of dementia while also being a military veteran. We also aimed to explore the links between previous experiences in the Armed Forces and the dementia diagnosis as perceived by those with the condition. Our findings offer an important first step in developing an evidence base that can help to inform policy and practice, thereby ensuring that effective and accessible support is available to both veterans with dementia living in the community, and also to their family members. Risk factors of developing dementia rather than experiences of living with dementia has been the focus of most dementia veteran research to date. In the US and UK specifically, the primary research focus around dementia in veteran populations has been understanding risk factors for developing the condition and whether veterans are at higher risk of developing dementia. The findings from UK studies thus far differ to a degree from the findings from US studies, in that sustained US research (Kornblith et al., 2020; Rafferty et al., 2018; Snyder, Carare, DeKosky et al., 2018; Weiner et al., 2013) reports an increased prevalence for dementia in veterans due to factors such as traumatic brain injury and post traumatic stress, whereas a large UK research study found a lower risk of dementia for veterans (compared to non-veterans) in communitybased samples (Greig et al., 2021); and a more recent large comparative study (Scottish veterans vs. non-veterans) found no difference in risk of dementia between the two groups overall, but found a strong association of developing dementia among those with a history of mood disorder (greater so in veterans) and those with post-traumatic stress disorder (PTSD) (Bergman et al., 2023). Additionally, a smaller UK case-control study (N = 121) concerning those still serving found no evidence for an association between psychological ill health and dementia (Greenberg et al., 2020). Given the different results in different studies, additional quantitative data is required. Whatever the predisposing and risk factors, evidence suggests veterans living with dementia face challenges. For example, a thematic scoping review of 36-studies by Ritchie and colleagues (2019) found that the post traumatic stress that some veterans with dementia experience, poses distinct support needs and care challenges. In addition, the focus of this study is on the experiences of veterans living with dementia in the community; even if UK veterans are not at increased risk of dementia compared to non-veterans, their experience of living with dementia and accessing and navigating services may still be different. For example, as noted above, the large comparative study of Scottish veterans by Bergman and colleagues (2023) found the association of mood disorder with dementia was stronger in veterans compared to non-veterans and recommendations included that healthcare providers should carefully assess the cognitive status of older veterans presenting with depressive illness to identify early dementia.

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