An exploration of patient experiences around diagnosis and treatment of dementia: implications for service development

Award Number
Research for Patient Benefit
Status / Stage
1 February 2010 -
1 October 2011
Duration (calculated)
01 years 08 months
Funding Amount
Funder/Grant study page
Contracted Centre
Hertfordshire PCT
Contracted Centre Webpage
Principal Investigator
Professor Frances Bunn
PI Contact
WHO Catergories
Models across the continuum of care
Understanding risk factors
Disease Type
Mild Dementia

CPEC Review Info
Reference ID95
ResearcherReside Team


Award NumberPB-PG-0808-16124
Status / StageCompleted
Start Date20100201
End Date20111001
Duration (calculated) 01 years 08 months
Funder/Grant study pageNIHR
Contracted CentreHertfordshire PCT
Contracted Centre Webpage
Funding Amount£145,926.00


Over 700,000 people in the UK have dementia. Early diagnosis and intervention is a key part of the forthcoming Dementia Strategy. There is a growing body of research on patient and carer perspectives of becoming a person with dementia. Although these studies are done in a range of settings it is likely there are elements and themes that transcend culture and context and can inform how clinicians and services respond to patients at this key time of transition. This project will use systematic review methods to establish an evidence base for medical and nursing practice when identifying and supporting people newly diagnosed with dementia. Stakeholder events will be used to develop review parameters and help understand the significance of the findings from a user and service perspective.To identify key themes from the literature and commonalities and differences across different groups and cultures To identify barriers and facilitators to early diagnosis and service provision To identify the kind of support from primary and secondary care people newly diagnosed with dementia and their carers perceive as helpful and unhelpful To identify common experiences and responses to early signs of dementia and whether these can be used to inform the development of services To explore review findings with key stakeholders and develop recommendations for practice Plan of Investigation This study has two phases. A multidisciplinary team, skilled in reviews, qualitative research, and the care of people with dementia, will systematically review qualitative studies on experiences of receiving a diagnosis and the transition to becoming a person with dementia. Review parameters will be refined at a preliminary stakeholder event. A comparative thematic approach will be used to synthesise results and identify barriers and facilitators to early diagnosis and service provision. In the second phase focus groups with service users, carers and health care professionals will be used to ascertain views on the review findings and assist in drafting recommendations and facilitating dissemination. The project will be guided by an advisory group including user representatives. Potential Impact This work will contribute to a comprehensive understanding of the types of services people with dementia and their carers find helpful and the barriers and facilitators to early diagnosis and appropriate service provision. Synthesising the literature in this way will avoid duplication of unnecessary research on a sensitive and potentially distressing topic. It will increase understanding of how culture can alter the recognition, help seeking behaviour and experience of patients with dementia and their carers and facilitate identification of key areas for future research. The findings will directly inform clinical practice and education, help inform the development of culturally sensitive services, be a resource for patient representative groups and influence future research.


To systematically review the international qualitative literature on older people’s and their carer’s experiences of becoming a person with dementia