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Abstract

Background: Perceptions and needs regarding quality of life (QoL) vary between general young and older populations and different types of instruments for the QoL assessment containing particular dimensions are available to each specific age group. In caregiving context, the increasing number of older people involved with the care for dependent family members with dementia and the higher impact of this task in physical, mental, economic and social dimensions when compared to youngers are recognized in the literature. However, instruments have being created and applied to mixed age groups of caregivers, regardless the specific needs in and perceptions of QoL in the older group. Objectives: A unique instrument aimed to assess the QoL of older family caregivers of patients with dementia is being developed, from the adaptation and validation process of the Huntington Disease Quality of Life Battery for Caregivers (HDQoL-C) to English older family caregivers of people with dementia. Methods: This study will be settled in two sequential phases: Qualitative and qualitative, respectively. Focus groups will be performed with the target population to systematically investigate their views and perspectives with regards to their QoL in the context of caregiving, to the relevance of items of the HDQoL-C to their reality and to the WHO QoL construct. The instrument will be adapted based on these findings and on the opinions of a panel of experts. After this, the new instrument will be validated for use with older family caregivers, through a pre-test and pilot study, assessing the psychometric properties of this new instrument: Its validity, reliability, stability and reproducibility, through adequate statistical analysis, in order to provide a valid and reliable instrument. Discussion: The study is being designed and a systematic literature review was carried out. The next step is to submit the project to Ethical approvals and the first phase of this study is intended to be developed this year. This will be a unique and specific instrument that reflects the views and needs of QoL of family caregivers in old ages caring for dementia people at home. It will allow researchers and health and social professionals to quantify the experience of care in old age in order to implement and evaluate therapeutic interventions with these people.

Biography

Deborah Cristina de Oliveira graduated in 2009 with Bachelor and Teaching degrees in Nursing at the University of Campinas (Brazil). She then completed an MSc in Health Studies with anticipated support for care of community-dwelling older adults in a multicentre epidemiological study (FIBRA) in Brazil. She is currently in her second year�s PhD research at the University of Nottingham (United Kingdom) focused on the quality of life of older family carers of people with dementia. She has experience with research in quality of life, dementia, family carers, older adults and social support.