Access to community care for people with dementia and their informal carers : Case vignettes for a European comparison of structures and common pathways to formal care.

BACKGROUND: People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time. OBJECTIVES: Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project. MATERIALS AND METHODS: The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario. RESULTS: A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system. CONCLUSION: Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.

Life weariness and suicidal thoughts in late life: a national study in Sweden.

OBJECTIVES: This study aimed at investigating the point prevalence of life weariness and suicidal thoughts and their relationship with socio-demographic characteristics in a population of older adults in Sweden. METHOD: Data from 7913 individuals aged 60 years and older were drawn from the Swedish National Study on Aging and Care, a collaborative study in Sweden. Life weariness and suicidal thoughts were measured by one item derived from the Montgomery-Åsberg Depression Rating Scale. A multinomial regression model was used to investigate the relationships of socio-demographic characteristics with life weariness and suicidal thoughts. RESULTS: Living in urban and semi-urban areas, being of advanced age, being divorced and having lower educational levels were related to life weariness. Living in a residential care facility, being widowed or unmarried, being born in a non-Nordic European country and experiencing financial difficulties were related to both life weariness and suicidal thoughts. Sex was found to be unrelated to either life weariness or suicidal thoughts. CONCLUSION: This study found that several socio-demographic variables were associated with life weariness and suicidal thoughts among older adults. Specific attention to older individuals with these characteristics may be warranted as they might be more vulnerable to life weariness and suicidal thoughts.

Formal and Informal Care of Community-Living Older People: A Population-Based Study from the Swedish National Study on Aging and Care.

OBJECTIVES: Study formal and informal care of community-living older people in the Swedish National study of Aging and Care (SNAC). DESIGN: Cross-sectional, population based cohort. SETTING: Three areas in Sweden: Municipality of Nordanstig, Stockholm and Skåne County. PARTICIPANTS: 3,338 persons ≥72 years. MEASUREMENTS: Patterns and amounts of informal and formal care by cognition and area of residence. RESULTS: 73% received no care; 14% formal care; and 17% informal care (7% received both). In the whole study population, including those who used no care, individuals in small municipalities received 9.6 hours of informal care/month; in mid-size municipalities, 6.6; and in urban areas, 5.6. Users of informal care received 33.1 hours of informal care/month in small municipalities, 54.6 in mid-size municipalities and 36.1 in urban areas. Individuals with cognitive impairment received 14.1 hours of informal care/month, 2.7 times more than people with no/slight impairment. In the whole study population, individuals in small municipalities received an average of 3.2 hours of formal care/month; in mid-size municipalities 1.4; and in urban areas, 2.6. Corresponding figures for formal care users were 29.4 hours in small municipalities, 13.6 in mid-size municipalities and 16.7 in urban areas. Formal care users received 7.1 hours, and informal care users, 5.9 hours for each hour/month received by people in the study population as a whole. CONCLUSIONS: More informal than formal care was provided. Informal care is more frequent in small municipalities than urban areas and for those with than without cognitive impairment. The relationship between data on the whole population and the data on users or care indicates that population-based data are needed to avoid overestimates of care.

Incremental patterns in the amount of informal and formal care among non-demented and demented elderly persons: results from a 3-year follow-up population-based study.

OBJECTIVE: Elderly care includes complex interactions between formal services, informal care, morbidity and disabilities. Studies of the incremental effects of formal and informal care are rare and thus the objective was to describe the longitudinal patterns in formal and informal care given to non-demented and demented persons living in a rural area in Sweden. METHODS: Transitions in the Kungsholmen-Nordanstig Project (n=919) was followed up 3 years later (n=579), presented as different combinations of informal and formal care, institutionalization and mortality. Number of hours spent on care was examined by the Resource Utilization in Dementia instrument (RUD). Bootstrapped descriptive statistics and regression models were applied. RESULTS: The overall mortality during follow-up was 34%, and 15% had been institutionalized. Of those who lived at home, those receiving only formal care had been institutionalized to the greatest extent (29%; p<0.05). In terms of hours, informal care decreased amongst demented. The ratio between demented and non-demented was greater at baseline, both regarding informal care (10:1 and 3:1, respectively) and formal care (5:1 and 4:1, respectively). People with mild cognitive decline and no home support at baseline had a great risk of being receiver of care (formal or informal) or dead at follow-up. CONCLUSIONS: The amount of informal care was lower for demented persons still living at home at follow-up than at baseline, probably due to selection effects (institutionalization and mortality). Mild cognitive decline of non-users of care at baseline was strongly associated with receiving care or being dead at follow-up.