AbstractThere are approximately 850,000 people in the United Kingdom (UK) with dementia (Alzheimer’s Society, 2013). Dementia is a progressive disorder caused by brain disease or injury, marked by cognitive, behavioural and personality changes. Support should be sensitive to the person as an individual, including their life history, personality, likes and dislikes, and focus on promoting their wellbeing. How to identify what is important to the person living with dementia can be challenging, particularly at an acute stage of the disease when behavioural or psychological symptoms emerge and self-identity is at risk as the disease progresses.
Self-Identity in Dementia:
A literature review on measurement of self-identity in dementia demonstrated the current evidence base is predominantly from the United States, originates from nursing or residential settings, and is not validated within a UK, NHS secondary care setting. One tool which might be useful to adapt for use within the UK is the Self-Identity in Dementia Questionnaire (SIDQ) developed in Israel by Cohen-Mansfield, Golander and Arnheim (2000). The SIDQ is a multi-informant self-completion questionnaire comprising four self-identity dimensions; occupation, family, hobbies and activities, and personal attributes.
Aims and Objectives:
Implement a culturally-adapted version of the Self-Identity in Dementia Questionnaire to multiple informers (individuals living with dementia, informal carers and formal carers) admitted to an acute NHS psychiatric admissions ward, to determine acceptability and practicality as well as usefulness in identifying self-identity,and the strength and levels of agreement between the individual, informal carer and formal carer.
Co-design through patient and public involvement resulted in the development of an adapted version of the SIDQ questionnaire. Multi-informant recruitment and consent from the three participant groups was obtained, adhering to the ethical guidance from the Mental Capacity Act (Department of Health, 2005).
Thirty-six participants, (15 individuals living with dementia, 15 informal carers and 6 formal carers) provided 15 complete data sets of the Adapted Self-Identity in Dementia Questionnaire (Adapted-SIDQ). The Adapted-SIDQ was able to educe self-identity data from all participants, including those with moderate to advanced dementia. Key findings related to family role, gender-specific roles, hobbies and activities, use of an individual’s name, low levels of agreement between informants, and the impact of different time frames on importance levels to inform therapeutic intervention.
It was feasible to use the Adapted-SIDQ as a research tool, effectively ascertaining an individual’s self-identity in those people living with dementia ranging from mild to severe stages. A critical evaluation of its implementation
determined challenges with recruitment of informal carers and its acceptability and practicalities as a clinical tool. Methods of research engagement to improve recruitment in future were identified, including earlier involvement in study design with facilitation and further support throughout the study.
Investigating self-identity in dementia with the Adapted-SIDQ concluded it is
identifiable and measurable, and acceptable, yet further research is required to
determine demand for in, and its integration into, clinical practice.
|Date of Award||May 2018|
|Supervisor||John Crossland (Supervisor) & Karen Burnell (Supervisor)|