Managing agitation and raising quality of life: semi structured interviews with family carers of people living with dementia

Published: 16 August 2019| Version 1 | DOI: 10.17632/s8wtptnhyc.1
Anne Laybourne


18 face-to-face semi-structured interviews with family carers of people living with moderate to severe dementia still living at home. Respondents were asked to describe their experiences of caring for the person living with dementia and especially coping around agitation or distress behaviours. 11 respondents had a spousal relationship with the person living with dementia; 6 were children or children-in-laws; and 1 was a sibling. The age range of respondents is 35 to 84 years old. 14 recorded their ethnicity as white, one as Asian, three as black. 11 respondents were women. Two had been caring for the person living with dementia for more than 10 years; 6 for 1-3 years; 4 for 5-10 years; and 4 for 3- 5 years. 2 had been carers for less than a year at the time of interviewing. Interview schedule: Looking back, when did you first notice the signs of the memory problems? So, how were things ok before that? How have you found the experience of caring for …….? Was there any help or support available to you at those times? Could you tell me a bit/ a bit more about situations related to your relative/friend’s symptoms of agitation and dementia? When did your relative/friend start to show symptoms of agitation? How did this affect your experience as a carer What symptoms of agitation did you observe? What was it like for you? What was it like for your relative/friend? Were/ are there any particular ways you dealt/ deal with your experiences of agitated behaviour then/ now? Did you seek any help for managing the agitated behaviour? Looking back how do you feel about the episodes of agitated behaviour that occurred? Do you have any advice that you could give to people going through the same difficulties? Is there anything else that you want to mention about how you coped with your relative/friend’s agitation?



University College London


Dementia, Informal Carer