Measuring younger onset dementia: A comprehensive literature search of the quantitative psychosocial research

Abstract

Background Research is beginning to demonstrate the unique psychosocial effects of young onset dementia. Theorising remains at an early stage and there has been little discussion about measurement and methodological issues. Our aim was to conduct a comprehensive literature search of the young onset dementia psychosocial research, and to identify the domains of experience measured with patients and caregivers. Method We conducted a search of five electronic databases (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) using equivalent database controlled vocabulary terms. We supplemented this search by using free text searches within electronic databases, searching reference sections of salient papers, and using online search engines. We defined psychosocial as referring to patient and caregiver psychological, behavioural, and social functioning in the context of living with young onset dementia. Results We identified 72 published articles, 49 quantitative and 23 qualitative. The quantitative articles form the focus of the present review. We identified 10 domains of patient experience measured and 14 domains of caregiver experience. The patient domains measured most often were behaviour, cognition, functioning, and severity, and reflected a focus on symptoms and clinical features. Quality of Life (QoL) was the patient domain measured least often. The caregiver domains measured most often were mental health and burden, and reflected a focus on psychological well-being and coping. Conclusion The scope of measurement is broader in caregivers than patients. QoL although under-researched may be a useful domain to measure in future research. Risk factors, measurement and methodological issues are discussed.