Reverse Journey in Dementia: a Clinician's Research Journey Leading to the Development of Carers' Diaries
Dementia is a progressively debilitating disorder often of insidious onset. When making the initial assessment or reviewing ongoing care of patients living at home, healthcare professionals rely on verbal information provided by person with dementia and their informal carers. Diaries have been used in very few instances to assist with gathering information about persons with dementia in the community. The review of literature found that there are very few studies that used carers’ diaries in the context of dementia care and its effects on carers and patients, and there was no previous study that had used carer diaries in the assessment of dementia patients’ problems in everyday life. It was also noted that no previous study has assessed the validity of these retrospective self-reporting by patients with dementia and their carers. If these self-reports are indeed unreliable and provide averaged impressions rather than actual fluctuations of frequency and magnitude of symptoms, then caregivers’ diaries of these symptoms/problems can provide important and valuable additional information to clinicians. The main aim of this study was to capture a variety of problems (cognitive, emotional, behavioural, etc.) in people with dementia, using diaries kept by carers for a week and comparing with carers’ oral recollection of problems in the same week. The second aim was to examine the potential therapeutic impact that keeping a diary had on carers’ quality of life as rated by the EuroQol, emotional wellbeing as rated by the Hospital Anxiety and Depression scale, as well as its impact on behavioural and psychological problems of dementia patients measured by the Neuro-Psychiatry Inventory. Method Carers were randomly allocated into two groups, the intervention and control groups. In the intervention group, carers received a diary and instructions on how to complete it for 7 days. A number of assessment tools and ratings scales were completed on Day 1 and Day 8. The control group carried out the same tasks except completing a diary. The scales used were questionnaires such as the Clinical Dementia Rating Scale and the Neuro-Psychiatry Inventory for carers to evaluate the problems in the person they cared for. The EuroQol and Hospital Anxiety and Depression scale were completed by carers to assess their own quality of life and screen for anxiety and depression in carers. The carers in the diary group were asked to complete a semi-structured questionnaire on their views about keeping a diary on Day 8 when they returned the diary to the researchers. On Day 28, carers in each group completed the Neuropsychiatry Inventory, EuroQol, Hospital Anxiety and Depression Scale and a semi-structured questionnaire asking about their experiences taking part in the study. Results There was a 1 year period of recruitment from 1 May 2014 to 30 April 2015. A total of 97 couples were identified and approached to take part in the study, with 84 couples agreeing and giving written informed consent to take part. Out of these, 78 couples went on to complete the study and 6 couples withdrew. The problems reported in narratives and diary entries were content analysed by two raters independently and classed into 5 categories: cognitive, behavioural, emotional, psychiatric and other. In retrospective narrative accounts, significantly more cognitive problems were reported than any of the other four problems. In contrast, in diaries both cognitive and behavioural problems were reported significantly more often than the other problems. In addition, in the diary condition, the mean number of problems identified in the carers’ diaries was significantly higher than in the carers’ narrative accounts on Day 1 and Day 8. Furthermore, the number of problems recorded in diaries did not correlate with retrospective problems reported on Day 1 but correlated with the number of narrative problems on Day 8. In terms of therapeutic benefits of diary keeping, there were no significant differences between diary and control groups’ mean scores in the Neuro Psychiatry Inventory, EuroQol and Hospital Anxiety and Depression Scale on Day 8. The mean Neuro-Psychiatry Inventory and Carer Distress scores were significantly lower at the end of the study for both the diary and control groups. Discussion The findings revealed that the carers’ diaries identified a greater frequency of problems compared to retrospective information gathered from carers, with cognitive and behaviour problems being the two most common problems. Despite identifying more problems, the use of the carers’ diaries in dementia did not appear to make a difference in carers in terms of carer distress, carers’ health related quality of life or psychiatric morbidity amongst carers. This may be on account of the short period of one week that the diaries were used in this study. The positive correlation of problems identified in the narratives in diary group at Day 8 with diary entries in contrast to narratives at Day 1 where there were no correlation with diary entries suggest diary entries can enhance recollection of problems in narratives of carers who keep diaries. Conclusions Carers’ diaries may be a useful tool in assessments of dementia patients as this study indicates that they may provide more information than obtained from a retrospective account of problems in persons with dementia. More research using diaries in dementia covering longer period than a week may be required to ascertain other benefits such as improving carers’ well-being and problems in persons with dementia.