Living with Lewy body dementia. Treatment, survival & quality of life

Abstract: Background: Patients with Lewy body dementias (LBD) have a complex clinical picture. With no prevention or cure, management focuses around symptomatic relief, however pharmacological and non-pharmacological options have been inadequately investigated. Moreover, the understanding of survival, prognostic factors and impact of the diagnosis in an already ageing and comorbid population is limited. Even though well-being is the ultimate goal in current management, the constituents of well-being in LBD, as well as the preferences of patients, have not been extensively explored. Aim: To understand the impact of living with Lewy body dementias, with a focus on pharmacological and non-pharmacological treatments, survival and quality of life. Study populations: The studies comprise of LBD patients included in an RCT of memantine (Study I-II) and from the Memory Clinic, Malmö, Sweden (Study III-V).Results: I) Physical activity during sleep decreased in LBD patients treated with memantine compared to placebo over 24 weeks. II) Quality of life in LBD is constructed of physical and socio-environmental domains. Treatment with memantine suggest a possible benefit over placebo for measures of caregiver-rated quality of life over 24 weeks. III) Swallowing dysfunction is common and sometimes asymptomatic in LBD patients. Carbonated thin liquid improves swallowing function compared to thin and thickened liquid. IV) Mortality is over three-times higher in patients with LBD compared to an age- and sex-matched general population. Excess mortality is found primarily in younger patients, females, those with lower MMSE and APOE ε4 carriers. V) It is feasible to conduct in-depth interviews with persons with DLB. Three themes characterise the experience of living with DLB; disease impact, self-perception and coping, and importance of others. Conclusions: This thesis emphasises the importance of pharmacological and non-pharmacological management in LBD, particularly in view of the poor prognosis compared to the general population. This includes management of non-cognitive symptoms such as swallowing dysfunction, for which carbonated thin liquid might be a therapeutic option. Ultimately, improving well-being is of utmost importance, and for this to be achieved involvement of patients with LBD in research is crucial. A multifaceted approach is recommended, addressing physical, social and psychological needs.