The Road Less Travelled: Identifying Support Needs in Lewy Body Dementia

Lewy Body Dementia (LBD) is an umbrella term for two dementia subtypes Dementia with Lewy Bodies (DLB) and Parkinson’s Disease Dementia (PDD) (Armstrong et al., 2020a; Larrson et al., 2019). Despite being the second most common type of dementia after Alzheimer’s Disease (AD), 1 in 3 cases of LBD are believed to be missed or misdiagnosed (Armstrong et al., 2020a; Chin et al., 2019). Diagnosis is difficult due to widespread clinical and pathological features that overlap with AD (Tang et al., 2015) consequently, it can take multiple consultations, over many years, before individuals receive an accurate diagnosis. (Galvin et al., 2010a). By then quality of life (QoL) has already been significantly impacted. LBD differs from AD in that more frequent non-cognitive symptoms, including autonomic dysfunction, motor and neuro-psychiatric symptoms - delusion, anxiety, depression and apathy (van de Beek et al., 2019) can have devastating effects on social engagement and wellbeing (Larrson et al., 2019). Additionally, fluctuations in cognition, wakefulness, attention, visual hallucinations and sleep behaviours (McKeith et al., 2017, as cited in Larsson et al., 2019, p.1) provide distinct challenges for living with LBD (Boot 2015, as cited in Larsson et al., 2019, p.1). A scoping literature review was conducted to explore support that is available to people with Lewy Body Dementia and family caregivers and to identify gaps in research and service delivery.