Trends in Psychiatry and Psychotherapy
https://trends.org.br/article/doi/10.1590/2237-6089-2015-0049
Trends in Psychiatry and Psychotherapy
Review Article

Quality of life in young onset dementia: an updated systematic review

Qualidade de vida na demência de início precoce: uma revisão sistemática atualizada

Maria Alice Tourinho Baptista; Raquel Luiza Santos; Nathália Kimura; Isabel Barbeito Lacerda; Aud Johannenssen; Maria Lage Barca; Knut Engedal; Marcia Cristina Nascimento Dourado

http://dx.doi.org/10.1590/2237-6089-2015-0049 Trends Psychiatry Psychother, vol.38, n1, p.6-13, 2016
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Abstract

Introduction Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers. Method This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL. Results People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective. Conclusion Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.

Keywords

Young onset dementia, quality of life, well-being, unmet needs, people with young onset dementia, caregivers

Resumo

Introdução A demência de início precoce se desenvolve antes dos 65 anos e possui consequências adversas específicas relacionadas à idade para a qualidade de vida (QV). Nós examinamos de forma sistemática fatores ligados à QV de pessoas com demência de início precoce e seus cuidadores. Método Foi utilizada a metodologia PRISMA, com busca nas bases de dados Cochrane, PubMed, SciELO, PsycINFO, Scopus e Thomson Reuters Web of Science electronic em 5 de julho de 2015. Foi utilizada a palavra-chave início precoce combinada com demência, Alzheimer, demência vascular, demência mista, demência frontotemporal, qualidade de vida, bem-estar e necessidades não atendidas. Nove estudos foram incluídos. Foram revisados os objetivos, desenho, amostra, instrumentos e resultados relacionados à QV. Resultados Pessoas com demência de início precoce pontuaram sua própria QV significantemente mais alta que seus cuidadores. A maior consciência da doença entre essas pessoas é associada com melhor QV dos cuidadores. Foi encontrada relação entre necessidades não atendidas e atividades diárias, falta de companhia e dificuldades com a memória. A demora na definição do diagnóstico, os serviços de saúde disponíveis e a falta de perspectivas futuras do cuidador foram fatores associados às necessidades não atendidas. Conclusão Deve-se considerar a possibilidade de conduzir investigações com amostras mais homogêneas e um conceito mais claro de QV. O presente estudo chama atenção para a necessidade de pesquisas em mais países, utilizando instrumentos específicos para pessoas com demência de início precoce. Seria interessante se estudos pudessem traçar paralelos com grupos de início tardio.

Palavras-chave

Demência de início precoce, qualidade de vida, bem-estar, necessidades não atendidas, pessoas com demência de início precoce, cuidadores

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