Non-pharmacological interventions for people living with young-onset dementia and their carers: A scoping review focussing on the support of participants' needs

Abstract

What is known on the subject?: Young-onset dementia (YOD) refers to a phenomenon in which dementia symptoms appear under age 65. Diagnosing YOD is difficult and its progression is fast. Furthermore, it limits the socio-economic careers of people living with YOD, regardless of their needs. People living with YOD and their carers have unstable occupational status and their dependents also have to face a high burden of care. They claim that existing social support for dementia is limited to the elderly and is not suitable for them. What the paper adds to existing knowledge?: The characteristics of non-pharmacological intervention studies for people living with YOD and/or their carers so far, and an analysis of the needs supported via the applied interventions. A theoretical basis and direction for the interventions to be studied in the future. What are the implications for practice?: Research and intervention development should focus more on the needs of people living with YOD. In addition, it is necessary to understand and reflect on carers who directly care for people living with YOD. A multidisciplinary programme that supports wide area of the needs should be developed. Abstract: Introduction: Young-onset dementia (YOD) is a highly influential disease that exerts force on the normal life of those who still have to continue social life. Research has been lacking in spite of its seriousness, which accounts for about 9% of all dementia cases. Aim: This study aimed to examine non-pharmacological interventions for people living with YOD and/or their carers, and to analyse how those interventions support their needs. Method: A scoping review methodology was utilized to search the studies examining interventions for people living with YOD and/or their carers, and in English or Korean. The information was extracted, summarized and analysed in CANE categories. Results: Sixteen studies were included in the review. Five types of interventions were drawn. ‘Memory’ was the most covered part of the needs by the interventions. Discussion: This study found that interventions currently do not match the needs of people living with YOD and their carers. Multidisciplinary research would be eligible to cover the subjects' wide range of the needs as much as possible. Implications for Practice: We suggest the development of a specialized needs assessment tool and specialized interventions for people living with young-onset dementia and their carers.