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 emotional- and 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

The association between aspects of carer distress and time until nursing home admission in persons with Alzheimer’s disease and dementia with Lewy bodies

Objective: The aim of this study was to explore the association between specific aspects of carer distress and time until nursing home admission (NHA) in people with mild dementia. Design: Prospective cohort study. Setting: Participants were recruited from the Dementia Study of Western Norway (DemVest). Participants: This study included 107 participants admitted to a nursing home who were diagnosed with Alzheimer’s disease (AD, n = 64) and dementia with Lewy bodies (DLB, n = 43) and their primary carers. Measurements: The Relative Stress Scale (RSS) was used to assess the level of reported distress in carers. Adjusted partial least square (PLS) prediction analysis of baseline items of the RSS was used to study the associations between individual items of the RSS and time until NHA. Results: Carer distress is an important contributor to early NHA, explaining 19.3% of the total variance of time until NHA in the model without covariates. In the adjusted PLS model, the most important RSS predictors of time until NHA were feeling frustrated (estimate = −137; CI, −209, −64.5), having limitations on social life (estimate = −118; CI, −172, −64), not being able to get away on vacation (estimate −116; CI, −158.3, −73.7), and feeling unable to cope with the situation (estimate = −63; CI, −122.6, −3.4). Conclusions: Preservation of the informal care capacity represents important steps for improving the management of resources in dementia care. This study identifies aspects of carer distress associated with a shorter time until NHA. Looking beyond the sum score of the RSS helps promote the development of flexible and tailored interventions and perhaps delay NHA.publishedVersio

The association between aspects of carer distress and time until nursing home admission in persons with Alzheimer’s disease and dementia with Lewy bodies

Objective: The aim of this study was to explore the association between specific aspects of carer distress and time until nursing home admission (NHA) in people with mild dementia. Design: Prospective cohort study. Setting: Participants were recruited from the Dementia Study of Western Norway (DemVest). Participants: This study included 107 participants admitted to a nursing home who were diagnosed with Alzheimer’s disease (AD, n = 64) and dementia with Lewy bodies (DLB, n = 43) and their primary carers. Measurements: The Relative Stress Scale (RSS) was used to assess the level of reported distress in carers. Adjusted partial least square (PLS) prediction analysis of baseline items of the RSS was used to study the associations between individual items of the RSS and time until NHA. Results: Carer distress is an important contributor to early NHA, explaining 19.3% of the total variance of time until NHA in the model without covariates. In the adjusted PLS model, the most important RSS predictors of time until NHA were feeling frustrated (estimate = −137; CI, −209, −64.5), having limitations on social life (estimate = −118; CI, −172, −64), not being able to get away on vacation (estimate −116; CI, −158.3, −73.7), and feeling unable to cope with the situation (estimate = −63; CI, −122.6, −3.4). Conclusions: Preservation of the informal care capacity represents important steps for improving the management of resources in dementia care. This study identifies aspects of carer distress associated with a shorter time until NHA. Looking beyond the sum score of the RSS helps promote the development of flexible and tailored interventions and perhaps delay NHA

The association between specific neuropsychiatric disturbances in people with Alzheimer's disease and dementia with Lewy bodies and carer distress

Objective: Neuropsychiatric symptoms (NPSs) are identified as important care‐recipient variables in terms of the impact on carer distress. The aim of this study was to determine whether specific neuropsychiatric disturbances in people with Alzheimer disease (AD) and dementia with Lewy bodies (DLB) differentially impact carer distress. Methods: This was a cross‐sectional study of people diagnosed with AD and DLB and their primary carers. The Relatives' Stress Scale (RSS) was used to assess the level of reported distress in carers, and the Neuropsychiatric Inventory (NPI) was used to assess NPSs. The effect of NPSs on carer distress was analyzed using correlation analysis and partial least squares regression. Results: This study included 159 participants diagnosed with AD (n = 97) and DLB (n = 62) and their primary carers (spouses and adult children). The majority of people diagnosed with dementia were women (64.2%), with a mean age of 75.9 years (SD, 7.4) and a mean Mini‐Mental State Examination (MMSE) score of 23.5 (SD, 2.9). The main analysis identified apathy as the most important NPS contributing to carer distress. Compared with AD, the explained variance in the DLB group was higher (r2 = 37.3 vs r2 = 53.7). In addition, more NPSs were considered clinically important in the DLB group. Conclusion: The findings of this study identify apathy as the most important NPS contributing to carer distress among carers of people with AD and DLB. These findings help us identify the support needs of families dealing with dementia

The association between aspects of carer distress and time until nursing home admission in persons with Alzheimer’s disease and dementia with Lewy bodies

Objective: The aim of this study was to explore the association between specific aspects of carer distress and time until nursing home admission (NHA) in people with mild dementia. Design: Prospective cohort study. Setting: Participants were recruited from the Dementia Study of Western Norway (DemVest). Participants: This study included 107 participants admitted to a nursing home who were diagnosed with Alzheimer’s disease (AD, n = 64) and dementia with Lewy bodies (DLB, n = 43) and their primary carers. Measurements: The Relative Stress Scale (RSS) was used to assess the level of reported distress in carers. Adjusted partial least square (PLS) prediction analysis of baseline items of the RSS was used to study the associations between individual items of the RSS and time until NHA. Results: Carer distress is an important contributor to early NHA, explaining 19.3% of the total variance of time until NHA in the model without covariates. In the adjusted PLS model, the most important RSS predictors of time until NHA were feeling frustrated (estimate = −137; CI, −209, −64.5), having limitations on social life (estimate = −118; CI, −172, −64), not being able to get away on vacation (estimate −116; CI, −158.3, −73.7), and feeling unable to cope with the situation (estimate = −63; CI, −122.6, −3.4). Conclusions: Preservation of the informal care capacity represents important steps for improving the management of resources in dementia care. This study identifies aspects of carer distress associated with a shorter time until NHA. Looking beyond the sum score of the RSS helps promote the development of flexible and tailored interventions and perhaps delay NHA