Psychological well-being over time among informal caregivers caring for persons with dementia living at home.

OBJECTIVES: To investigate informal caregivers' psychological well-being and predicted increase in psychological well-being, when caring for persons with dementia (PwDs) living at home, related to caregiver, PwD and formal care (FC) factors. METHOD: A cohort study at baseline and 3 months' follow-up in eight European countries. Caregivers included (n = 1223) were caring for PwDs aged ≥ 65 years at home. Data on caregivers, PwDs and FC were collected using standardized instruments. Regression analysis of factors associated with caregiver psychological well-being at baseline and 3 months later was performed. RESULTS: Factors associated with caregiver psychological well-being at baseline were positive experience of caregiving, low caregiver burden, high quality of life (QoL) for caregivers, male gender of PwD, high QoL of PwD, few neuropsychiatric symptoms and depressive symptoms for the PwD. At follow-up, caregivers with increased psychological well-being experienced of quality of care (QoC) higher and were more often using dementia specific service. Predicting factors for caregivers' increased psychological well-being were less caregiver burden, positive experience of caregiving, less supervision of the PwD and higher caregiver QoL, if PwD were male, had higher QoL and less neuropsychiatric symptoms. Furthermore, higher QoC predicted increased caregivers' psychological well-being. CONCLUSION: Informal caregiving for PwDs living at home is a complex task. Our study shows that caregivers' psychological well-being was associated with, among other things, less caregiver burden and higher QoL. Professionals should be aware of PwD neuropsychiatric symptoms that might affect caregivers' psychological well-being, and provide proper care and treatment for caregivers and PwDs.

Experience of burden in carers of people with dementia on the margins of long-term care.

OBJECTIVES: This study aimed to identify the factors determining carer burden in a group of carers supporting people with dementia (PwD) deemed to be at high risk of moving to long-term residential or nursing home care. DESIGN: National data collected as part of the European RightTimePlaceCare project were analysed. This included 81 dyads of community-dwelling people with dementia and their informal carers. METHODS: Structured face-to-face interviews were conducted in North West England between June 2011 and April 2012. Interviews collected data relating to the person with dementia (cognitive functioning, activities of daily living, neuropsychiatric symptoms and formal and informal dementia care resource use) and carers' level of burden (22-item Zarit Burden Index), hours spent caring and availability of additional informal support. RESULTS: Logistic regression analysis identified five factors associated with high carer burden: neuropsychiatric symptomatology in the PwD, intensive supervision of the PwD by the carer, being a female carer, being an adult-child carer and absence of informal carer support. Use of home care or day care services was unrelated to burden. CONCLUSION: Support programmes focusing on challenging behaviours and risk management may be of benefit to carers. More individually tailored interventions for specific carer groups including female or younger carers may be warranted. The implementation of peer support networks could be beneficial to carers who lack additional family support.

A revised interview for deterioration in daily living activities in dementia reveals the relationship between social activities and well-being.

BACKGROUND: The ability to perform instrumental activities of daily living deteriorates early in dementia and affects people with dementia and their carers. However, little is known about individual instrumental activities of daily living impairments. This study therefore investigated instrumental activities of daily living deficits in mild dementia by exploring the relationship between instrumental activities of daily living initiative and performance and general cognition, people with dementia quality of life and carer stress. Moreover, this study explored the contribution of social instrumental activities of daily livings, which to date have received little or no attention. METHODS: Twenty carers were administered a revised Interview for Deterioration for Daily Living Activities in Dementia and measures of carer stress (General Health Questionnaire-12) and quality of life in dementia (Quality of Life in Alzheimer's Disease). The people with dementia completed measures of general cognition (Mini-Mental State Examination and Montreal Cognitive Assessment). Data were analysed using frequency and bivariate correlation analyses and basic thematic analysis was employed to the qualitative data on carer stress. RESULTS: Carer interviews showed that instrumental activities of daily living impairments were associated more with performance than with initiative deficits. Increased social isolation and reluctance to engage in hobbies were particularly stressful to carers and impacted negatively on the people with dementia quality of life, yet were not reported as critical in the qualitative assessment. CONCLUSIONS: This study shows that people with mild dementia are impaired to different degrees on their initiative and performance of instrumental activities of daily livings and that impairments relating to social activities particularly relate to well-being. The revised Interview for Deterioration for Daily Living Activities in Dementia with its social instrumental activities of daily livings can help shift the focus of interventions to address those activities that are frequently impaired in mild dementia and relate to people with dementia and carer well-being.

Inter-professional perspectives of dementia services and care in England: Outcomes of a focus group study.

Many people living with dementia are supported at home using a variety of health and social care services. This paper reports the findings from a focus group study undertaken with staff in community mental health teams to explore areas for improvement in relation to national policies and recommendations for dementia care. Two focus groups were held with staff (n = 23) in 2011 to discuss topics including service delivery, information and communication, and provision of health and community care for people with dementia. Respondents identified problems with information sharing and incompatible electronic systems; inflexibility in home care services; and poor recognition of dementia in hospital settings. General practitioners had developed a greater awareness of the disease and some community services worked well. They felt that budgetary constraints and a focus on quality indicators impeded good dementia care. Key areas suggested by staff for improvements in dementia care included the implementation of more flexible services, dementia training for health and social care staff, and better quality care in acute hospital settings.

People with dementia and carers' experiences of dementia care and services: Outcomes of a focus group study.

An ageing population and an associated increase in the prevalence of dementia are of increasing concern in the United Kingdom and worldwide. Recently, the United Kingdom and other European countries implemented national dementia strategies to address this. This paper reports on the outcomes of a focus group study involving people with dementia and carers on their experiences of dementia care and support services in relation to government and third sector agencies' objectives and recommendations. Three focus groups comprising carers and people with dementia (n = 27) were undertaken covering topics related to experiences, service receipt, information sharing and service development. Some participants experienced difficulties or delays in receiving a dementia diagnosis and in accessing appropriate care. The provision of training, timeliness of information, access to appropriate advice, and consistent and flexible services were deemed important. The findings suggest that some issues raised by participants were highlighted in earlier policy objectives and recommendations but remain of central concern. The projected growth in the number of people with dementia coupled with reduced availability of informal care and increased demand for services emphasises the need to transform dementia care in the United Kingdom.