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It is estimated that between 42,000 and 64,000 under 65s in the UK suffer from dementia. At younger ages dementia often presents in unusual and diagnostically challenging ways. There may be changes in behaviour, functioning, language, personality or visuospatial difficulties.
There is little understanding about the experiences and needs of this group, particularly when memory loss is not the dominant symptom
Over 180 patients (and their carers) have been enrolled into the study which is addressing this problem through a series of individual interviews and focus groups with patients, carers and clinicians. The intention is to identify assessment tools that will adequately measure the impact of dementia in younger age-groups.
This study aims to:
• Investigate measurement issues (e.g. domains measured, instruments used, lived experiences.)
• Understand the factors that impact on quality of life (QoL) in patients and their carers.
• Improve measurement of QoL and impact of dementia in this group through assessment of issues relevant in younger onset dementia.