Abstract
BackgroundIn dementia care, it is crucial that the chain of care is adapted to the needs of people with dementia and their informal caregivers throughout the course of the disease. Assessing the existing dementia care system with regard to facilities, availability and utilization may provide useful information for ensuring that the professional dementia care and service system meets the needs of patients and their families from disease onset to end of life.MethodsThe aim of this study was to further develop and test a mapping system, and adapt it to a local context. In addition, the aim was to assess availability and utilization of care activities as well as professional providers’ educational level in nine municipalities under the categories of Screening, the diagnostic procedures, and treatment; Outpatient care facilities; Institutional care and Palliative care. This cross-sectional study was conducted in April through May 2015. Data was derived from the health care and social service systems in nine rural and urban municipalities in two counties in Sweden. The mapping system covered seven categories with altogether 56 types of health care and social service activities.ResultsThe mapping system was found to be reliable with minor adaptations to the context mainly in terms of activities. Availability of care activities was common with low utilization regarding Screening, the diagnostic procedures, and treatment; Outpatient care facilities; Institutional care and Palliative care and dementia trained staff was rare. Availability and utilization of care activities and professionals’ educational level was higher concerning screening, the diagnostic procedures and treatment compared with outpatient care facilities, institutional care and palliative care.ConclusionsThe mapping system enables policy makers and professionals to assess and develop health care and social service systems, to be offered proactively and on equal terms to people with dementia and their informal caregivers throughout the course of the disease. The educational level of professionals providing care and services may reveal where, in the chain of care, dementia-specific education for professionals, needs to be developed.
Highlights
In dementia care, it is crucial that the chain of care is adapted to the needs of people with dementia and their informal caregivers throughout the course of the disease
This study reports on a Swedish project titled, “Living with dementia, care and service systems (LWD)” (No 2013121), which was inspired by the RTPC study
Context Health care in Sweden is performed in accordance with the Health and Medical Services Act [16] regulating the responsibility for health care across 21 counties and 290 municipalities
Summary
It is crucial that the chain of care is adapted to the needs of people with dementia and their informal caregivers throughout the course of the disease. Assessing the existing dementia care system with regard to facilities, availability and utilization may provide useful information for ensuring that the professional dementia care and service system meets the needs of patients and their families from disease onset to end of life. Dementia diseases progress towards increased dependence in activities of daily living as well as severe communication difficulties, in particular at the later stage of the disease. This may be experienced as being out of control, as well as feelings of uncertainty, and fear of the unknown [4] and trigger behavioural problems. People with dementia and their caregivers sometimes experience professionals as mainly reactive to their needs [5], and perceive the dementia care system as fragmented and hard to access [6, 7]
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