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The Debenham Project: research into the dementia/memory loss journey for cared-for and carer: 2012-13

This report lays out the findings of research carried out between July 2012 and August 2013 for The Debenham Project in Suffolk, funded by the Norfolk & Suffolk Dementia Alliance. The research sought to obtain information from family carers and cared-for about the memory loss/ dementia journey; a profile of the carers and cared-for; their experiences; and also views from them and others on the positive and negative aspects of early diagnosis and early intervention of/by services.

The research used a methodology devised by the researchers working to an agreed project plan from the Debenham Project Trustees. In essence, this methodology sought to:- a. Devise questionnaires for family carers b. Trial the questionnaire with a limited number of family carers known to the Debenham Project, and then refine and roll it out to the full survey population c. Conduct structured interviews with as many family carers as possible of the survey population d. Devise and launch a questionnaire for volunteers in the Debenham Project e. Interview relevant professionals including GPs and voluntary sector.

The principal survey group was forty-two family carers of people with memory loss/dementia living either presently or in the recent past in the area covered by the Debenham GP practice including its two surgeries in Otley and Grundisburgh. The aim of this research is to inform the funders; local and regional authorities and national government as well as the Debenham Project and partners to enable robust planning of future services and support for people with dementia and their carers.

This report:-  Lays out the responses to the family carer questionnaire, question by question  Examines and computes these responses, categorising where clearly possible & helpful  Incorporates experiences and views from the structured interviews, Debenham Project volunteer questionnaires and relevant professionals in social care and health services, including the voluntary sector  Discusses the findings and draws conclusions The research is felt to be unique in its person-focused methodology and approach, and this is evidenced through the high returns and response rates. The researchers are trained & experienced in ‘non-instructed’ advocacy thus were able to engage empathetically with the client group while maintaining a professional and critical distance. 

Additional Titles
Journal of Dementia Care;
Original source (some source materials require subscription or permission to access)

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