- Research article
- Open Access
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Dementia care and service systems – a mapping system tested in nine Swedish municipalities
BMC Health Services Researchvolume 18, Article number: 778 (2018)
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. 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.
The 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.
The 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.
The 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.
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. Dementia diseases are progressive and individuals at different stages have different needs in terms of professional care and service, including support and knowledge transfer to informal caregivers. Currently there is a lack of knowledge about how to best structure health care and social service systems to meet the needs throughout the disease process. A newly developed mapping system to assess dementia care systems was applied at a national level in eight European countries in the RightTimePlaceCare (RTPC) study (No. 24 21 53), conducted between 2010 and 2013 . So far, it has not been tested locally in municipalities and counties. Assessing the dementia care system regarding facilities, availability and utilization may be informative and serve to ensure that the professional dementia care and service system meets the needs of patients and their families from disease onset to end of life.
With the demographic transition to an ageing population taking place worldwide, more people are developing dementia . The political view in Western societies has been that people should be able to “age in place”  i.e. at home, informal caregivers more transferring more responsibility to informal caregivers. Thus, people with dementia will more commonly be cared for at home, with an informal caregiver involved as the main provider of care and services. 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  and thus trigger behavioural problems. People with dementia and their caregivers sometimes experience professionals as mainly reactive to their needs , and perceive the dementia care system as fragmented and hard to access [6, 7].
This challenges the professional health care and social service system to deliver a continuum of individualized care and support for people with dementia and their informal caregivers [8, 9]. It needs to include information about available professional care and services, knowledge about how to provide basic care, about the dementia disease and how to understand and meet the needs of the person with dementia, and respite care for both people with dementia and their informal caregivers. Access to formal care, i.e. availability and utilization of health care and social services, is dependent on professionals’ and informal caregivers’ ability to interact with the accessibility  and, in addition, the professionals’ educational level.
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. Instead of taking a national perspective, a local perspective was adopted when applying the study to municipalities, to explore the variation between municipalities and test the mapping system for its applicability in illuminating resources available to people with dementia diseases and their informal caregivers. It is hoped that through the mapping system, the municipalities will be able to critically review and adjust the system to serve people with dementia and their caregivers. The LWD study addresses key issues in dementia care such as the range of care and services, living conditions for people with dementia and informal caregivers, and their quality of life, applying a model based on the one hand, on the process of dementia from early stage to end of life and on the other hand, the type of activities needed to meet the needs of them.
The original mapping system  aimed to get a national overview of available and utilized care activities in eight European countries, and covered 50 types of health care and social services (from here on referred to as “care activities”) categorized in seven categories throughout the course of the dementia disease. Furthermore, the aim was to explore who professional caregivers educational level according to the International Standard Classification of Education (ISCED)  for each care activity. The mapping system was originally developed by researchers from each country, identifying different activities provided by professionals and non-professionals. Agreement on concepts and terminology was worked through, inspired by consensus methods .
The original mapping system covered a wide range of different care activities and these were structured into seven care categories: Screening, the diagnostic procedures, and treatment, and Outpatient care facilities. Furthermore, they covered Care at home, Institutional care, Palliative care, Informal caregiving and supportive actions, and Civic organizations. The categories was based on knowledge about needs during the process of dementia. Most of the care activities were in the category Care at home (n = 18) and the least range of activities were in the category of Informal caregiving and supportive actions (n = 4) . Analysing the Care at home category showed higher availability than utilization , and the findings indicated more similarities than differences between the eight European countries. Furthermore, the original study revealed that specialized dementia care and services were sparsely available and even more sparsely utilized . Support for informal caregivers was available but utilized by few and this was consistent for all the countries. Several types of professionals were involved in the care activities, but it was not always clear who was responsible for what  and the more personal care required the lower the education of the professionals involved. Those involved in Screening, the diagnostic procedures, and treatment and Outpatient care facilities were educated at a Bachelor’s level or higher, while everyday care was provided by professionals, trained at a lower ISCED level or workers with no formal training at all. Professionals specifically trained in dementia care were rare [14, 15]. In addition, countries with national guidelines seemed more aware of the importance of professionals with specialized dementia education .
The rationale behind this study is that testing and developing the mapping system further may be useful for assessing the care activities at the local level, including the structure of the health care and social service systems. Furthermore, it may be useful for describing availability and utilization of health care and social services for people with dementia and their informal caregivers and for determining professional providers’ educational level. By making the resources available and visible to the staff as well as the informal caregiver and the person with dementia it may be used more efficiently, some activities taken out and others added. Policy makers and professionals may be enabled to develop their health care and social service system. Making the system visible to professionals, they can be more proactive and communicate available care and support to people with dementia and caregivers. This is important to ensure transparency, accessibility, and equal and individualized health care and social services to all citizens regarding dementia care, and also to fill the gaps and systematize the chain of care in accordance with the disease progression.
The aim of this study was to further develop and test the mapping system in a local context of nine Swedish municipalities. In addition, the aim was to assess availability and utilization of care activities as well as professional providers’ educational level under the categories of Screening, the diagnostic procedures, and treatment, Outpatient care facilities, Institutional care and Palliative care.
Health care in Sweden is performed in accordance with the Health and Medical Services Act  regulating the responsibility for health care across 21 counties and 290 municipalities. The county councils are responsible for health care, i.e. assessment and treatment, in hospitals and outpatient clinics. The municipalities are responsible for care and social services, i.e. home care and services, day care and nursing homes. Care for individuals aged 65 years and older and living at home, is granted after needs assessment, according to the Swedish Social Services Act .
Design and sample
This was a cross-sectional descriptive study of the care and services available to people with dementia and their informal caregivers throughout the course of the disease. The study population was nine municipalities (1–9) in two counties in southern Sweden. Data was collected during April to May 2015, by people knowledgeable about their municipality. Each municipality selected one or two contact persons representing the municipality. One municipality nominated three contact persons to have back-up in case of absences. These were professional providers such as registered nurses specialized in dementia, social workers and care coordinators with experience of dementia care. The researchers and contact persons had regular meetings, training and monitoring to discuss the description of the care activities and professionals, the meaning of availability and utilization and how to use the mapping system.
In all there were 220,641 inhabitants in the municipalities, 21% of whom were aged 0–17, 58% who were aged 18–64, and 21% who were 65 years or older. The number of inhabitants varied from 1944 to 88,108, and three of the nine municipalities (municipalities 2, 5 and 6) represent rural areas. People with a foreign background accounted for 24.1% (mean) (range 21.4–26.8%) of these municipal populations, compared with 22.2% for Sweden overall. In 2014, the nine municipalities together had 1087 persons with a dementia diagnosis .
The mapping system
The original mapping system horizontally explored five stages of the dementia disease – the diagnosis stage; early stage; intermediate stage; late stage; and end-of-life . Vertically, 50 different types of care activities were listed and defined and they were based on how the disease progressed over time as reflected in type of care needs. Each aspect of the care activities included estimations of availability, utilization, and providers of care and service, at each stage of the dementia disease. This division in availability versus utilization was based on that availability can be common whilst in fact it is rarely used for various reasons. Response alternatives for estimations of availability were “For all”, “For most”, “For few” and “For no one”; and estimations of utilization were “By all”, “By most”, “By few”, and “By no one”. Professional care providers were classified regarding educational level in accordance with the ISCED  and were reported for each care activity .
The mapping system was adapted to the local context, in consensus with the researchers and contact persons in each municipality (Table 1). Each care activity was thoroughly.
providers (a social worker or care manager) were contacted for accurate information. Furthermore, information was gathered from the internet regarding professionals, and their levels of education and care training descriptions. Care activities were removed, remained unchanged or were refined in the description. After minor adjustment in the descriptions of care activities, the mapping system was pilot tested in two municipalities, No changes were made after the pilot testing so the mapping system was adapted in the other seven participating municipalities. Data was collected according to the manual developed for this study, concerning availability and utilization of care activities for dementia care, and providers for each care activity during the last 6 months by the contact persons.
Availability and utilization of care activities and the professionals’ educational level were analysed descriptively with regard to variation for each of the four stages of the dementia disease and in each of the nine municipalities. For all seven care categories included in the mapping system, response alternatives for availability and utilization of the 56 care activities were “For all” and “For most” and are given in bold in the Tables to distinguish from the response alternatives “For few” and “For no one”. Professionals involved in the care was recorded in a separate mapping system. The categories Screening, the diagnostic, procedures and treatment, Outpatient care facilities, Institutional care and Palliative care are described in this study. The three categories remaining, Care at home, Informal caregiving and supportive actions (including counselling and day care form Outpatient care facilities) and Civic organizations, will be reported elsewhere.
The developed mapping system
When reviewing the care categories, all seven care categories were found to be valid and remained as in the original mapping system. A review was made of the stages of dementia as there were insignificant differences between estimations of availability and utilization in the diagnosis stage and the early stage. Consequently, the two stages were collapsed into one – the “early stage”. For further development of the mapping system and to apply it to the local context, as well as to the national guidelines  and laws regulating health care and the social service system [16, 17], four care activities were added and three were removed (Table 1). Five care activities were refined in the description and subdivided to give ten care activities. The mapping system therefore covered 56 care activities and was found to be reliable after minor adaptation to the context.
New care activities were added under the categories Outpatient care facilities (namely “specialized team in primary care for persons with dementia”); Care at home (“contact person”, in accordance with the Social Service Act and “respite care at home”) (not shown in Table 1); and Institutional care (“safety accommodation for people aged 70+”). The care activity “nursing home, with dementia care units” was removed from the category Institutional care because nursing homes in Sweden either are for older people in general or are specialized in dementia care. Under the category Civic organizations, two care activities were removed; “paid voluntary organization” and “self-help organization/self-support group”.
As previously mentioned, minor changes were made to refine the definition of four care activities which were then subdivided to give ten care activities (“voluntary surveillance by telephone” and “technical equipment”; “voluntary aid”; two activities, one with and another without specialization in dementia care, of “respite care, temporary and planned”; two activities, one with and another without specialization in dementia care, of “respite care, temporary and in case of emergency”). Provision of vision and hearing aids was changed to “own activities” as people 65 years and older can get remittance from healthcare for vision and hearing aids. Under the care category Care at home, “foot care” was removed as it was considered to constitute self-management unless the person was diabetic. When comparing the nine municipalities for availability of 19 care activities throughout the course of the disease, the mean availability was 13 care activities (range 11–16). Four municipalities offered more than 13 care activities and two municipalities, one rural and one urban, offered 16 out of 19 care activities.
Staff training and professionals’ educational level were added to apply to the Swedish health care and social service system. Concerning general health care training this was training to become a dentist, dietician, speech therapist, dental hygienist and occupational therapist assistant. Under “specialized health care training”, “psychologist specialized in neuroscience” was added, and regarding specialized training in dementia, occupational therapy and physiotherapy were added. The provider category of “care coordinator”, a professional coordinating care for people with dementia and their informal caregivers was added (Table 2).
Availability and utilization of care activities were higher for Screening, the diagnostic procedures, and treatment (Table 3) than for Outpatient care facilities (Table 4), Institutional care (Table 5) and Palliative care (Table 6). There were differences between availability and utilization of care activities in the nine municipalities, suggesting that the mapping system was able to assess and intercept variation. The educational level of professionals working in Screening, the diagnostic procedures and treatment (Table 7) was generally higher, mostly involving a Bachelor’s to a Master’s degree in Science compared with the educational level of professionals working in Outpatient care facilities (Table 8), Institutional care (Table 9) and Palliative care (Table 10).
Screening, the diagnostic procedures, and treatment
The care category Screening, the diagnostic procedures, and treatment, involved identification and treatment of dementia diseases and included the dementia screening programme, standard diagnostic procedure for dementia diseases and memory clinics as well as pharmacological and non-pharmacological treatment for dementia and assessment of behavioural psychological symptoms of dementia (BPSD) (Table 3). Standard diagnostic procedure and pharmacological treatment for specific dementia diseases was available for all and utilized by most people with a suspected dementia disease, predominantly in the early and intermediate stage. There was availability of pharmacological treatment also for BPSD but less utilization. Non-pharmacological treatments for specific dementia diseases such as orientation to reality, reminiscence therapy, tactile massage, and cognitive stimulation were available in almost all municipalities and most of these treatments were utilized in the intermediate stage. Non-pharmacological treatment for BPSD, such as environmental modification, massage, presence of pets, selected music, and distraction was available in more than half of the municipalities and was mostly utilized in the intermediate stage. Dementia screening in primary care and memory clinics were less available throughout all stages of the dementia disease. Most people utilized screening (where this was available) in primary care in municipalities; by contrast, memory clinics were utilized by few or no one.
Outpatient care facilities
Outpatient care facilities included outpatient clinics specific for dementia and also specialized teams in primary care. Specialized teams in primary care may be necessary depending on the needs of the person with dementia and were more common than outpatient clinics for people with dementia. Where available, they were utilized by most in the early to intermediate stage (Table 4).
The care category Institutional care encompassed institutional rehabilitation, institutions or residential homes, and temporary or planned as well as specialized or not specialized care. Institutional rehabilitation and residential homes were available for all, but municipalities differed in utilization. Nursing homes for older people in general were available in more than half of the municipalities with variation regarding utilization. All the care activities under this category were utilized by most, predominantly in the late and end of life stage (Table 5). Availability of nursing homes and community dwellings with dementia care units as well as psychogeriatric units was rare in the municipalities and where they existed, they were utilized by most or all.
The care category Palliative care encompassed care at home, institutional care and advanced directive services. Home and institutional care was available for all in most of the municipalities through all stages of the dementia disease, but was utilized by few (Table 6). In one municipality, palliative care was available for no one. Advanced directive services were available for all in two municipalities through all stages of the dementia disease and for few or no one in the remaining seven municipalities. Where available, they were utilized by few except in the end of life stage.
Professionals providing care and their educational level
Professionals providing the care in the care category Screening, the diagnostic procedures, and treatment most often held a Bachelor’s degree to a Master’s degree in Science (Table 7). Professionals holding a post-secondary qualification or a Bachelor’s degree provided non-pharmacological treatment. Professionals in some municipalities were specialized in dementia care, most often in the standard diagnostic procedure for dementia diseases or in memory clinics. Outpatient care facilities in several municipalities engaged professionals holding a Bachelor’s or a Master’s degree (Table 8). In one municipality, professionals held a post-secondary education; professionals specialized in dementia care were rare. Professionals involved in Institutional care in residential homes, nursing homes and community dwellings held a post-secondary educational level, a Bachelor’s, or Master’s degree (Table 9). Professionals specialized in dementia care most often worked in residential homes. Palliative care was provided by professionals educated to a post-secondary educational level or holding a Bachelor’s or Master’s degree, some of whom were specialized in dementia care (Table 10).
The previously developed mapping system for dementia care was found to be reliable after making minor adaptation to the context at the local level, i.e. the nine municipalities studied. The categories developed were found to be robust and no changes were needed; however slight adaptations to definitions were needed. Adaptation of activities in the different municipalities was also needed. The differences between estimations of availability and utilization in the diagnosis stage and early stage were insignificant the two stages were collapsed into one stage, the “early stage”. Care activities were added and removed to fit the local context although not many alterations were made. Furthermore, minor adjustments were made to the definitions of care activities through the course of the dementia disease.
The results revealed a range of different care activities, more than contained in the original mapping system. These results suggest that the mapping system is a valid tool for exploring and comparing care and service systems for persons with dementia and their caregivers at a local level. However adaptations may be needed in terms of care activities offered and their definition. Further, the results revealed differences between the nine municipalities and allowed comparison between municipalities that are responsible for the care of people with dementia, also making the options for care and support visible. It is well known that people with dementia and their caregivers have individual needs throughout the stages of dementia. Some have reported perceiving health care professionals as reactive rather than proactively informing the patient and their caregiver(s) about the disease progression and the support available to meet their needs . By systematically exploring the available care activities, professionals and policy makers could be proactive in their communication with care recipients and fill gaps where needed. In order to further bring light on what is needed throughout the course of dementia it would be worthwhile to interview the informal caregivers and the person with dementia to find out what they know about options throughout the disease progression.
Persons with dementia in the nine municipalities do not all seem to have equal access to care and services despite the existing national or local guidelines for dementia care. For instance, in this study, standard diagnostic procedure for dementia diseases was available in all municipalities except one. In addition, there were differences between municipalities regarding dementia screening carried out in primary care and memory clinics. This might relate to availability of competence in the primary health care centres but also to adherence to guidelines which shows a diversity between the physicians’ length of clinical experience and among patients . Pharmacological treatment for dementia diseases was available for all, which is consistent with the results from Swedish national data [1, 2] and utilized by most. Pharmacological treatment for BPSD was available for all, but on the whole it was utilized by few which is in accordance with national directives . Non-pharmacological treatment of BPSD, such as environmental modification, distraction, massage, presence of pets and listening to selected music , which should be easy to apply for professionals and which has few or no side effects, was available in six municipalities, where it was utilized by most in the intermediate to late stage. This was inconsistent with the RTPC study  where non-pharmacological treatment was available through all stages of the dementia disease. Outpatient care facilities in the present study were few and not often used, regardless of rural or urban location. Differences were found also between municipalities regarding institutional care specifically for people with dementia. This was available in fewer than half of the municipalities, regardless of rural or urban location. By contrast, in the end stage of life, palliative care was available in close to all municipalities with mixed utilization and with no differences between municipalities. The quality of these care and treatment activities cannot be revealed by this study; however, by making the differences visible the study may initiate a process of discussing and developing a system based on the needs of the patients and their informal caregivers.
In accordance with the RTPC study  the present study shows differences between availability and utilization of care activities. Several care activities were available for all or most people with dementia, but utilized by few or no one, with some variation between municipalities and care categories. For instance, in the early to intermediate disease stage when diagnosis and treatment is needed, utilization was more frequent in the category Screening, the diagnostic procedures, and treatment. The modest availability of Outpatient care facilities, on the other hand may be due to smaller municipalities using the outpatient care facilities in larger municipalities. When the dementia disease progresses towards late and end of life stage, and the person with dementia has extensive care needs, there is an increase in utilization of institutional care and institutional palliative care.
There may be several explanations for non-utilization of available care activities in this study. One likely explanation is that the informal caregiver(s) and the care recipient may not be aware of the care and service activities that are available. It may also be that the care activities are not convenient or judged too expensive and/or too far away . The visibility of the care is probably the most important explanation and this may coincide with a gate-keeper attitude. It has been shown that the system has been experienced as fragmented, with different professional providers and organizations responsible for different care and service activities, resulting in uncertainties regarding what to ask for and whom to contact within the care system [6, 7]. At present, a coherent chain of care exists for cancer care in Sweden, but not yet for dementia care . By systematically assessing availability of services and utilization, we can learn valuable knowledge about the local health care and social service system, which can form the basis for developing needed care activities, eliminating any that are not needed and communicating with those in need of support. It will make the chain of care visible and enable development of the existing health care and social service system at a local level for policy makers and professionals. This is essential to avoid a gate-keeper situation and instead ensure transparency, accessibility, and equal and individualized health care and social services for dementia care. Timely diagnosis and timely access to care can help people with dementia and their caregivers in their care planning and enable them to take control over their situation .
The health professionals’ educational level varied between the different care activities and municipalities, which may have affected the ability to provide high-quality care. Professionals with the lowest level of education were those involved in the everyday care of the persons with dementia and their caregivers in home and institutional palliative care, which is in line with findings from the European study . For instance, those providing non-pharmacological treatment, held an upper-secondary ISCED qualification  while professionals working in institutional and palliative care were educated to upper-secondary ISCED level or above. The consequences of low professional education in the intimate care activities can be debated; this could for instance be detrimental for the quality of care but also for the staff’s work environment. Professionals involved in screening, diagnosis and outpatient care held a Master’s or in some cases, a Bachelor’s degree. This is similar to the results reported from the RTPC study . With an ageing population, the demands on long-term services will increase. To meet these demands, highly skilled staff are needed. It has been suggested that, to increase the quality of care and residents’ quality of life, the competences of baccalaureate-educated registered nurses are needed .
Specialized training in dementia existed in the care categories analysed in this study, predominantly involving professionals with a Bachelor’s degree but also those with an upper-secondary ISCED level education, which is inconsistent with the RTPC data . This may be due to the national guidelines for dementia care. Also there is awareness among the public that professionals specialized in dementia care are able to provide individualized care throughout the course of the dementia disease . Dementia specific education existed at different levels, from upper-secondary ISCED to Master’s degree level. Specialized training in dementia was rare in this study, and existed in fewer than half of the municipalities. Notable was that professionals specialized in dementia care were involved in the care of elderly patients in general, indicating that, in these municipalities, it was considered important to be able to care for people with dementia at general facilities. It is essential that professionals providing health care and social services to persons with dementia and their informal caregivers have relevant education and knowledge so that they can provide dementia-specific, individualized care and services [26, 27]. Research is sparse and further research is needed regarding whether specialized training in dementia has an impact on the quality of care for people with dementia living at home and in nursing homes [25, 28].
This study has limitations. We are only starting to investigate the system of care and services for a severe disease like dementia. It may be that the response alternatives for availability and utilization were too vague. Also the data were collected during April and May 2015 and it is possible that data would be different if collected today. Attempts were made to define each care activity; however, the descriptions are still open to interpretation, e.g. by the professionals. To address this problem, those performing the data collection were given specific training and instructions. The quality of the care activities cannot be stated in this study although some indications depending on the educational level of those involved can be seen. Also, the reasons for differences between availability and utilization needs to be further explored and so also does how the options in the system are communicated to those who might need it. Furthermore, no data were collected on how responsibility for care and services was distributed in real life. For people with dementia and their caregivers, it is of utmost importance to know who is responsible for which care activities and who to turn to. The mapping system can, and needs to, be adapted to each heath care and social service system and to national guidelines where available. To strengthen the mapping system for interconnection, descriptions of care activities should be more specific to avoid interpretation by professionals. Non-uptake of services and additional needs and the link between these may have to be studied further by additional interviews or surveys to get an idea of the complexities of the chain of care.
The strength of this study was that each municipality was given the same instructions for data collection, ensuring reliability. A pilot test of the developed mapping system was performed after re-fining descriptions of care activities and providers. However, each contact person reported availability and utilization of municipality care and services, as well as providers’ educational level, from a local perspective, which may have affected the validity of the results. Testing the mapping system at a local level, regarding availability and utilization of care activities and professionals educational level, and further, comparing local data between municipalities worked well, thus revealing differences that suggest that the mapping system is an instrument able to assess and intercept variation.
A previously developed mapping system for investigating resources in health care and social services for people with dementia and their informal caregivers was adapted and tested in nine municipalities in Sweden to enable its use at a local level. Minor context-related changes were made regarding care activities and professionals’ educational level. The categories capturing the type of care activities available was found to be reliable. The system enables professionals and policy makers to reveal strengths and weaknesses in the health care and social services system when providing care and services on equal terms for people with dementia and their informal caregivers. Mapping the educational level of professionals providing the care and services may reveal, where in the chain of care, dementia-specific education for professionals needs to be developed. Further, the mapping system may enable professionals to be proactive and communicate available care and services to people with dementia and their caregivers throughout the course of the dementia disease. This is also invaluable in policymaking.
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We are grateful for Professor Ulla Melin Emilsson’s contribution to development of the “Living with dementia” project from the underlying RTPC study and to Professor Staffan Karlsson for his contribution during the planning stage and data collection.
This work is part of the project “Living with dementia, care and social service systems”, supported by a grant from the Kamprad Family Foundation (Contract number 2013121). In addition, the Department of Social Work at Linnaeus University, the Alzheimer’s Society and the Greta and Johan Kocks Foundation funded this study. The funding body was not involved in the design of the study, the collection, analysis and interpretation of data, nor in writing the manuscript.
Availability of data and materials
The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.
Ethics approval and consent to participate
This study complies with the ethical principles of the Helsinki declaration . Ethical approval for the study was granted by the Regional Ethical Review Board in Lund, Sweden (2010/538; additional application 2014/765). The Head of Social Services in each municipality signed informed consent prior to data collection.
Consent for publication
The authors declare that they have no competing interests.
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