Measuring the impact of Dementia in younger age groups (YODA) study.

Theme 2

Ageing and Dementia

Start date: 31/10/2014

End date: 31/12/2017

Research aims and questions

The aims can be grouped into four related parts across two inter-related work packages


·      Identify the range of different measurement instruments used in younger-onset and atypical dementias 



We conducted a comprehensive literature search of the young-onset dementia psychosocial research.  



We identified the key studies in the field; the experimental and research designs used; the main measurement instruments used; the main areas of experience measured; and the fundamental subjective experiences for both patients and caregivers.  Some of the findings from these reviews, both quantitative and qualitative, are reported in the following papers:


Spreadbury, J., & Kipps, C. (2016). Measuring young onset dementia: a comprehensive review of the quantitative and qualitative psychosocial research. Alzheimer's & Dementia: The Journal of the Alzheimer's Association12(7), P1012.


Spreadbury, J. H., & Kipps, C. M. (2016). Measuring younger onset dementia: A comprehensive literature search of the quantitative psychosocial research. Dementia, 18(1), 135-156.

Spreadbury, J. H., & Kipps, C. (2017). Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers. Dementia18(2), 579-598.


·      Improve understanding of important care issues for this group and their carers



We conducted in-depth semi-structured qualitative interviews with young-onset dementia patients, caregivers, and healthcare professionals.  One of the aims was to understand the experience of young-onset dementia care for each group.



We obtained the experiences of living with young-onset dementia and experiencing young-onset dementia care from the perspectives of patients, caregivers, and healthcare professionals.  Using the data from healthcare professionals we produced a model of some of the most important issues in young-onset dementia care.  Some of the findings are reported in the following paper:


Spreadbury, J. H., & Kipps, C. M. (2018). Understanding important issues in young-onset dementia care: the perspective of healthcare professionals. Neurodegenerative disease management8(1), 37-47.


·      Develop a QoL scale relevant to needs identified in qualitative studies



We used the findings from our two published reviews on the young-onset dementia psychosocial research (one on the quantitative studies and one on the qualitative), and our data from the qualitative interviews with patients, caregivers, and healthcare professionals to develop a quality of life in young onset dementia questionnaire.



       We developed a quality of life in young-onset dementia scale (QoL-YoD).  One version is for patient self-reports and one version for caregiver self-reports.  Each questionnaire is multidimensional and attempts to measure young-onset dementia experiences across several areas of life (e.g. care/support, functioning, mental health, relationships/interacting with others, employment/finances, family/parenting, coping, etc). 


·      Implement range of health related outcome measures in clinical practice to improve post-diagnostic support in younger-onset dementia.



We established a longitudinal prospective cohort study of young-onset dementia patients and caregivers.  We obtained data from 204 interviews with participants (100 patients/104 caregivers) across 5 time points over a two year period.



We identified differences in quality of life between patients and caregivers using different conceptual assessments of quality of life.  Patients tended to report better quality of life than caregivers.  Quality of life may remain stable for patients and caregivers at least over a short duration.  Some of the findings are reported in the following outputs:


Dixit, D., Kipps, C., & Spreadbury, J. (2018). Quality of life (qol) assessments in individuals with young-onset dementia and their caregivers. Alzheimer's & Dementia: The Journal of the Alzheimer's Association, 14(7), P545.


Lit, J., Spreadbury, J. H., Orlando, R., & Kipps, C. (2019).  Analysing the characteristics of the longitudinal profile of quality of life in a young onset dementia population.  Poster presentation at AAIC 2019 Los Angeles.


Assessments of Quality of Life in Young Onset Dementia Patients and Caregivers (paper in preparation).


            Economic Burden in Young Onset Dementia (paper in preparation).

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