Carers to people with Lewy body dementia and Alzheimer's disease : experiences and coping strategies

The overall aim of this thesis was to investigate and describe the experience of carers to people with different types of dementia, in particular Alzheimer’s disease (AD) and dementia with Lewy bodies (DLB), and how they cope with their situation. The project comprises four studies. Study I is a systematic review of peer-reviewed articles retrieved from MEDLINE, PSYCINFO and EMBASE through OVID, using PRISMA guidelines, to explore the association between neuropsychiatric symptoms (NPS) in people with dementia and carer stress. Study II and III are cross-sectional (Study II) and longitudinal (Study III) studies, with data from carers to persons with mild dementia recruited from out-patient clinics in the Western part of Norway who were followed annually for up to three years (2005-2013). The aim was to study the differences and the level of carer reported distress in mild dementia, especially in dementia with Lewy bodies (DLB) and Alzheimer’s disease (AD). The analysis of study II was performed by using regression analysis, first unadjusted, then adjusted, and presenting descriptive data. Study III used a mixed model regression analysis, in addition to present descriptive data. Study IV comprised focus group interviews with adult carers, spouses, children and grandchildren to persons with DLB and AD. The data from this study were analysed using systematic text condensation. Main findings from study I were that the most important NPS associated with carer burden were irritability, sleep disturbance, and anxiety. Further, from study II, the carers to people with AD and DLB experienced moderate to high level of burden in an early stage of dementia. NPS, motor symptoms and activities of daily living scores were significantly associated with higher carer burden, based on scores on the Relative Stress Scale. Main findings from study III were that distress in carers of persons with mild dementia increases over time. This increase was noted in carers of persons with AD, whereas distress in carers to people with DLB was high at baseline, but remained relatively stable over time. One possible explanation for the lack of increase in carer stress to people with DLB, was that many DLB patients were admitted to nursing home during the first year, which likely reduced the burden of carers. In study IV, the experiences of carers to people with DLB and AD were divided into two categories, different diagnoses-different experiences of symptoms, and coping strategies. Symptoms like sleep disturbance, fluctuations, hallucinations, appetite changes, swallowing problems and change in day-to-day functioning were challenges in DLB and deficit in short-term memory and delusions for carers to people with AD. The second category, coping strategies were divided into emotionaland problem focused strategies. Individual strategies both varied and were common for the carers of the two groups of dementia. Common strategies were getting knowledge, using humour and always hope, and including the need for time to themselves. In summary, the four studies provide new information about the association between specific symptoms in dementia and carer stress, diseasespecific carer challenges over time, and specific experiences and coping mechanisms used by the carers. The differences inherent in the caring role for people caring for persons with DLB and AD requires tailored and targeted support and knowledge, both for the person with dementia, but also for the carers. LIST OF SCIENTIFIC PAPERS I. Terum, T. M. , Andersen, J. R. , Rongve, A. , Aarsland, D. , Svendsboe, E. J., & Testad, I. (2017) The relationship of specific items on the Neuropsychiatric Inventory to caregiver burden in dementia: a systematic review. International Journal of Geriatric Psychiatry. 2017; 32(7):703-717. II. Svendsboe, E. , Terum, T. , Testad, I. , Aarsland, D. , Ulstein, I. , Corbett, A. and Rongve, A. (2016) Caregiver burden in family carers of people with dementia with Lewy bodies and Alzheimer’s disease. International Journal of Geriatric Psychiatry, 31(9), 1075-1083. III. Svendsboe, E. J., Testad, I. , Terum, T. , Assmus, J., Corbett, A. , Aarsland, D. , Rongve, A. (2018) Patterns of carer distress over time in mild dementia. International Journal of Geriatric Psychiatry. 2018; 33(7):987-993. IV. Svendsboe, E. J., Stenwall, E. , Corbett, A. , Rongve, A. , & Testad, I. Perceived symptoms and coping strategies in carers to people with Lewy Body dementia and Alzheimer’s Disease. (In writing).