When dementia occurs in people under the age of 65 years, it often presents in unusual and diagnostically challenging ways. There may be changes in language, behaviour or navigation difficulties, and frequently, it’s not Alzheimer’s disease, but other forms of dementia such as frontotemporal dementia.
Over the last few years, there have been significant improvements to dementia care in the community, but this has not always been appropriate to those with younger-onset forms of dementia. In fact, very little reliable information exists about the particular challenges that this group and their carers face in care provision. Issues such as ongoing employment, financial responsibilities, working spouses and dependent children are not identified in many of the available assessment instruments.
Similarly,there is poor understanding of the service requirements for this group, particularly when memory loss is frequently not the dominant symptom. NIHR CLAHRC Wessex is addressing this through a series of individual interviews and focus groups with patients, carers and clinicians with the intention of identifying assessment tools that will adequately measure the impact of dementia in younger age-groups.
We will validate revised instruments through a wider collaborative effort, the Younger-onset Dementia Assessment Study (YoDA). The YoDA study was conceived to improve research into younger-onset dementia in order to better address service provision in this group. Over 100 patients and carers have been enrolled into this study in Southampton. An extensive literature review is underway with interviews due to start in January 2015. For information please contact Dr Christopher Kipps, Consultant Neurologist & Honorary Clinical Lecturer University Hospital Southampton NHS Foundation Trust – by email at firstname.lastname@example.org or email@example.com.