Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

Barriers and facilitators to the access to and use of formal dementia care: findings of a focus... Background: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. (Continued on next page) * Correspondence: astrid.stephan@medizin.uni-halle.de; gabriele.meyer@medizin.uni-halle.de Astrid Stephan and Anja Bieber contributed equally to this work. Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Magdeburger Straße 8, 06112 Halle (Saale), Germany Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Stephan et al. BMC Geriatrics (2018) 18:131 Page 2 of 16 (Continued from previous page) Conclusion: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families. Keywords: Dementia, Person with dementia, Informal carer, Formal care, Utilisation, Focus groups Background those who do not. Moreover, the findings regarding di- Compared with other chronic conditions, dementia is verse types of services are often contradictory [12, 13]. more often a reason for care dependency among Recent qualitative studies add to the scope of know- older people [1]. People with dementia may become ledge and explore the process of seeking help and using dependent on help in several everyday activities early services but from the perspectives of informal carers in the progression of the disorder [2]and canhavea only [15, 16]. These studies show that informal carers wide range of needs, as too can their informal carers may sometimes perceive accessing and navigating [3]. Several types of support and community services health- and social care services as even more burden- may become necessary as the condition progresses [1, some than caregiving itself. Successful interaction be- 4]. In contrast, research has shown that people with tween formal and informal care is shaped by the trusting dementia and their informal carers use fewer services relationship and recognition between professionals and in comparison to other people in need of care [5, 6]. informal carers [17], and it requires improved profes- The findings of one systematic review show that med- sional understanding of the complex social relationships ical services are frequently used, whereas community and functioning of families [18]. services, such as home support, day care, respite care A scoping review that we performed of studies investi- or counselling, are used less often, even though these gating access to and use of services for people with de- services may be particularly helpful [7]. mentia and their families shows that people with The point in time when people with dementia and their dementia are rarely included in studies investigating ser- informal carers gain access to professional support and vice use, and if so, they often only serve as informants care may have implications for how the caregiving situ- regarding cognitive or functional and behavioural status. ation develops. Research suggests that the first phases of Very few studies have sought to understand barriers in the caregiving process are particularly important and that service use from the perspectives of people with dementia the timely use of community services potentially delays themselves, i.e., a case study focusing on certain ethnic institutionalisation [8]. groups or early onset dementia or that investigates service The results of an early study indicated that the most needs (unpublished work, manuscript submitted). important reason for the non-use of services was that in- A qualitative study including the perspectives of all formal carers did not consider services as necessary, al- stakeholders involved is lacking but may be particularly im- though a considerable level of burden was reported. The portant in order to comprehensively describe perceived reluctance of the person with dementia and a lack of barriers and facilitators in accessing and using formal com- knowledge about the services also contributed to munity care for people with dementia. Therefore, we ex- non-utilisation [9, 10]. plored the perspectives of all stakeholders involved in the Since then, the number of studies investigating the process of accessing and using formal care and services, use of services by people with dementia has in- namely, people with dementia, their informal carers and creased. Stigmatic beliefs about dementia and inad- health and social care professionals. We aimed to improve equate knowledge were found to be main barriers the understanding of the facilitators and barriers to the ac- preventing people from seeking help [11]. Recent sys- cess to and the use of formal dementia care for the further tematic reviews focus on factors influencing the service development of appropriate services and interventions. use of people with dementia and their informal carers, in- cluding community-dwelling people with dementia in Methods general [7, 12], only certain types of services such as res- The transnational research project Actifcare (ACess to pite care [6, 13], or they exclusively investigate male carers Timely Formal Care, http://www.actifcare.eu/) investi- [14]. The majority of these studies were observational gated the accessibility and utilisation of formal care for studies or surveys conducted in the USA, Canada and people with dementia and their informal carers in eight Australia, seeking to explain factors influencing the use of European countries: Germany (DE), Ireland (IE), Italy services by comparing people who are using services with (IT), the Netherlands (NL), Norway (NO), Portugal Stephan et al. BMC Geriatrics (2018) 18:131 Page 3 of 16 (PT), Sweden (SE) and the United Kingdom (UK). The making. Former informal carers were included, since main aim of the study is to analyse the pathways to care they could report a wide range of caregiving experiences. and to gain a better understanding of the reasons for in- Healthcare professionals had to be in regular contact equalities in access to health and social care. Thus, a co- with people with dementia and/or informal carers during hort study with dyads of people with dementia and their their daily work, either providing access to formal care informal carers over a one-year period was performed, or providing formal care and support for people with de- and their needs, service use patterns and quality of life mentia and their families. Relevant professional back- were assessed [19]. To further explore the barriers and grounds were determined by each country based on the facilitators to accessing and using formal care—as expe- inter-disciplinary nature of dementia care and access to rienced by people with dementia and their carers and dementia care in that country, which was investigated in health and social care professionals—a cross-national a preceding phase of the Actifcare project [22]. focus group study was conducted (Work Package 2 of the Actifcare Project). Focus groups are considered an Sampling appropriate approach, as they have the potential to en- Participants were contacted by gatekeepers (such as hance the understanding of factors that influence behav- counselling agencies, support groups and known contact iour or motivations [20, 21]. The findings of the focus persons from other parts of the project) and selected groups have also been used to inform subsequent parts according to the criteria described above, with the aim of the Actifcare study, in particular, single interviews of having a large variation in perspectives. Oral and writ- with national political decision makers/influencers and ten information about the study was provided by the semi-structured interviews with a subsample of the researchers. dyads from the cohort study. Formal dementia care was defined in accordance with Data collection the overall research protocol. It comprises home nursing An interview guide was developed in close collaboration care; day care services; and community, long-term med- with all partners to ensure the applicability across the ical and social care structures, such as respite services, countries, and it was piloted in Germany (09/2014). The multi-professional mental health teams and dementia interview guide was developed following a comprehen- care teams. It does not include acute medical services sive understanding of access to care [23] and thus fo- such as hospitals or specialised physicians. It also excludes cused on expectations or concerns prior to using formal domestic home help, housekeepers, volunteers, support care and personal experiences with accessing formal groups, transport services and meal programs [19]. care, as well as barriers and facilitators to the access to and utilisation of formal care. The topic guide was Group composition and participants slightly different per type of individual, but it followed Separate focus groups were performed with people with the same global topics (Additional file 1). In line with dementia, informal carers and healthcare professionals. the pilot study, it was found that discussing issues re- Focus groups typically consist of five to eight partici- garding formal care with people with dementia was chal- pants [20]. For the focus groups with older and cogni- lenging. To ease the discussion and clarify the topic, tively impaired people, we decided that smaller groups pictures showing typical caregiving situations were would be more appropriate, so three to four participants added to the questions for people with dementia [24]. were included. According to the study protocol of the The questions were carefully translated by each coun- Actifcare project, all types of dementia were included. try’s research team into their national language. Two ex- People with dementia had to be formally diagnosed. The perienced and trained researchers conducted the focus phase of dementia was not assessed prior to the focus groups in each country; one served as a moderator who groups. Informal carers took care of people with demen- fostered an active and open discussion, and the other tia from early to advanced stages of the disease. served as an assistant who took notes (field work took We included people with dementia and informal place between 09/2014 and 04/2015). All focus groups carers who had some kind of experience with accessing were audio recorded and transcribed intelligent verbatim and using formal care or who had at least tried to access (i.e., omitting filler expressions, redundant phrases or formal care in the past. words) for the purpose of content analysis. Informal carers could be relatives, friends or neigh- bours. The intention was for the sample to cover a wide Data analysis range of caregiving experiences, along with different ages So far, established guidelines on how to analyse cross-na- and different relationships to the person with dementia. tional qualitative data are lacking. Some published Informal carers had to have been in regular contact with cross-national studies have applied predetermined cat- the people with dementia and involved in care decision egories [25, 26]. We argue that predetermined categories Stephan et al. BMC Geriatrics (2018) 18:131 Page 4 of 16 may not appropriately reflect the diversity across the those with people with dementia tended to be shorter countries; therefore, qualitative content analysis using and lasted approximately 70 min (range 26–120 min). open coding was performed in each county [27, 28]. The mean group size was five participants (range 2–8 National findings were translated into English and synthe- participants; only one focus group with people with de- sised consecutively by the Work Package leading team mentia consisted of two participants). (DE). Overall, we followed an interpretive paradigm [29]. Participants National analysis In total, 261 participants took part in the focus groups To ensure consistency and methodological rigor [25], a (Table 1). People with dementia and their informal manual was provided to all the partners (available on re- carers used diverse services, including support groups, quest from the corresponding authors). To extract the con- counselling, educational training, help at home with so- tent, meaning units (e.g., sentences, paragraphs) were cial activities or personal care, community day centres, labelled with codes. Based on the codes, categories and day care, memory clinic, and respite care. In Ireland, the sub-categories were developed that were considered the United Kingdom, the Netherlands and Norway, interdis- manifest content of the transcripts [28]. The categories for ciplinary teams were in place in the community that the three types of focus groups were derived separately. took care of a number of participants. Only three infor- We followed the assumption that during this process, dia- mal carers and one person with dementia did not use logue among researchers promotes the most likely inter- any type of service. Four people with dementia in pretation of the data [28]. Thus, two researchers per Portugal lived in a nursing home and reported their ex- country independently derived initial codes based on the periences retrospectively. In Portugal, only a few com- most information-rich transcripts. Categories were then munity services are available, and institutional care is developed during a personal meeting. The remaining ma- often the first type of service. In most countries, it was terial was then analysed by one researcher applying the difficult to identify eligible people with dementia who categories. In a final step, the categories were introduced were able and willing to join a focus group. Since youn- to researchers not involved in the analysis in order to ger people with dementia and people in an early stage of check the plausibility. The national findings (in terms of dementia were easier to engage with, they were predom- categories, descriptions and anchor examples) were trans- inately included in some countries. Informal carers rep- lated into English. To increase the trustworthiness of the resented different caregiving situations and different translations, we followed the manual recommendations relationships to the people with dementia and were stipulating that the same person should perform all the more often female. Health and social care professionals translational work in each country [30]. had a mean working experience of 16 years and were mainly nurses, although there were also psychologists, Cross-national analysis social workers, general practitioners (GPs) and other The translated national findings were synthesised using a physicians. comparable approach as the one used in the national ana- lysis. Two researchers of the Work Package leading team (DE) independently derived first codes based on two country reports, and first cross-national categories were Findings developed during a joint meeting. The remaining reports Overall, we identified 16 categories describing influential were then analysed by using the derived categories; modi- aspects in accessing and using services that may serve as fications were possible throughout the analysis. As a final a barrier or facilitator. These categories were grouped step, the system of categories was reviewed and the cat- into three global themes in order to structure the syn- egories were sorted into global themes. To approve the thesis: 1) Aspects related to the individuals involved synthesis and to guarantee that no country-specific find- (characteristics of every individual involved), 2) Aspects ings were misinterpreted, the categories were discussed by related to the health- and social care system (such as all the partners using written feedback, video conferences available resources, regulations, features and design of and personal project meetings that took place twice per services), and 3) Overarching aspects (important on both year. The analysis was supported by the software MAXQ- levels). Although the categories were derived separately DAplus version 11 (VERBI GmbH, Berlin, Germany). for the three types of focus group, a considerable level of agreement, particularly in terms of the main categories, Results was revealed regarding barriers and facilitators to formal Description of the focus groups dementia care from the perspectives of people with de- Overall, 55 focus groups were performed. Each lasted, mentia, informal carers and health and social care pro- on average, approximately 90 min (range 26–140 min); fessionals (Table 2). Stephan et al. BMC Geriatrics (2018) 18:131 Page 5 of 16 Table 1 Overview of focus groups and characteristics of participants per country. Values are numbers unless stated otherwise People with dementia Total DE IE IT NL NO PT SE UK Number of focus groups 14 3 2 2 2 3 1 1 Number of participants 51 10 7 6 8 9 4 7 Number of female participants 28 7 6 4 2 4 3 2 Mean age, years (range) 76 (54–96) 68 (55–84) 68.5 (54–88) 80 (75–87) 76 (64–85) 75 (61–86) 90 (82–96) 75 (66–85) Mean time since diagnosis, 2.5 (0–10) 2.5 (0–7) 2 (1–5) ≤ 1 5.5 (0–10) 3.5 (1–6) 3.5 (2–5) 3 (1–6) years (range) Living alone/with family 16/31 4/6 3/4 2/4 4/4 2/7 – 1/6 member Informal carers Total DE IE IT NL NO PT SE UK Number of focus groups 21 5 3 2 2 2 2 2 3 Number of participants 96 21 16 8 10 7 11 8 15 Number of female participants 77 18 12 8 9 6 8 5 10 Mean age, years (range) 63 (37–91) 65 (47–83) 64 (50–89) 58 (49–70) 77 (68–86) 50 (37–66) 59 (43–78) 68 (56–91) 66 (46–84) Mean caregiving time, years 5(1–12) 4.5 (1–10) 7 (2–12) 6 (2–10) 5.5 (1–11) 4 (1–9) 4 (0–8) 3 (2–7) 4 (1–10) (range) Relationship to person with dementia Spouse 47 10 9 – 10 2 4 2 10 Child 42 8 7 8 – 37 5 4 Other 7 3 –– – 2 – 11 Healthcare professionals Total DE IE IT NL NO PT SE UK Number of focus groups 20 4 3 2 2 2 2 2 3 Number of participants 114 16 18 9 12 13 12 12 22 Number of female participants 98 12 17 6 11 13 11 12 16 Mean age, years (range) 45 (23–62) 49 (42–60) 42 (28–56) 45 (26–52) 42 (27–63) 46 (25–61) 41 (27–56) 52 (44–62) 42 (23–57) Mean working experience, 16 (0.25–42) 17 (3–30) 12 (2–25) 18 (1–26) 17 (3–35) 13 (0.25–30) 12 (2–30) 23 (7–42) 12 (0.25–30) years (range) Professional backgrounds Nurses 60 9 10 3 5 10 5 11 10 Social workers 6 3 1 1 –– 1 –– General Practitioners 5 1 – ––– 3 –– Other specialist physicians 6 1 2 –– – – 4 Psychologists 10 –– 16 – 1 – 2 Others 27 25 413 2 16 Registered, assistant or community mental health nurses Counsellors, educators, case managers People with dementia living in institutional long-term care n = 95 due to missing data Aspects related to the individuals involved towards formal care have a decisive impact and were Characteristics and situation of the informal carer predominantly described as reticent or negative, as The influence of the informal carers on formal care seen from the perspectives of the health and social use was comprehensively discussed by the health and care professionals. Informal carers may not perceive a social care professionals and informal carers but was need for help and may not identify themselves as only seldom mentioned by the people with dementia. ‘carers’, particularly in the early stages of the disease. A lack of knowledge and information regarding de- mentia and available services may hinder people from “It is, of course, a group that does not want to admit seeking help. The informal carers’ attitude and beliefs the problem, that there is something going wrong, and Stephan et al. BMC Geriatrics (2018) 18:131 Page 6 of 16 Table 2 Overview of (sub-) categories per type of focus group Categories and subcategories People with dementia Informal carers Health and Social Care Professionals 1) Aspects related to 1.1 Characteristics and situation of the informal carers the individuals � Attitude and beliefs towards � Being proactive � Knowledge/information involved formal care � Mutual help between informal carers � Attitude and beliefs towards � Attitude and beliefs towards formal formal care and dementia care and dementia � Emotions of the informal carer � Personal motives, need factors & � Personal motives & crisis as a trigger trigger situations � Financial resources 1.2 Characteristics and situation of the people with dementia � Attitude and beliefs towards formal � Attitude and beliefs towards formal � Attitude and beliefs towards formal care care and dementia care towards dementia ο perceiving formal care as a � Emotions threat to independence � Attitude and beliefs towards dementia/dealing with the disease � Being involved in decision making � Knowledge, information and experiences � Accepting the diagnosis & adaptation process � Being proactive/initiative of others � Personal motives to use formal care � Financial resources 1.3 Expectations of healthcare professionals and formal care � Lack of or uncertain expectations � Lack of or uncertain expectations � Firm diagnosis & reliable information � Joint decisions and shared responsibilities � Emotional support � Sufficient information � Understanding care needs � Need-tailored support 1.4 Experiences with the uptake of formal care � (Dis-)Satisfaction � (Dis-)Satisfaction � (Dis-)Satisfaction � Experiences towards the right moment of using formal care 1.5 Family structures and social environment 1.6 Characteristics & strategies of the health and social care professionals � Attitude towards dementia, people � Attitude towards dementia, people with � Attitude towards dementia, people with dementia and towards informal dementia and towards informal carers with dementia and towards informal carers � Competencies (knowledge and social carers � Relationship with health and social competences) � Competencies (knowledge and social care professionals � Trial visit competences) � Strategies of the health and social care professionals 2) Aspects related to 2.1 Availability of services the (health and � Lack of services � Lack of services � Lack of services (also regionally) social care) system � Staff deficits and insufficient financing � External barriers in utilisation (limited � Staff deficits and insufficient financing resources, insufficient financing, non- � Time constraints transparent structures) 2.2 Features of the services � Need-tailored services � Need-tailored services � Need-tailored services � Key contact person � Key contact person � Cost factor 2.3 Complexity of the system � Complex regulations � Complex regulations � Complex regulations � Disjointed nature of the system � Disjointed nature of the system � Disjointed nature of the system � Variability of the system/unclear roles 2.4 Continuity � Key contact point/key contact person � Key contact point/key contact person � Key contact point/key contact person Stephan et al. BMC Geriatrics (2018) 18:131 Page 7 of 16 Table 2 Overview of (sub-) categories per type of focus group (Continued) Categories and subcategories People with dementia Informal carers Health and Social Care Professionals 2.5 Networking & collaboration 2.6 Role of the general practitioner (GP) 3) Over-arching 3.1 Information aspects 3.2 Public awareness 3.3 Early contact I see many cases where they try to conceal it as long as “Often, it does come to crisis. People can be plodding possible.” (Healthcare professional/NL). on quite nicely. One of them goes into hospital and then it’s a crisis. It would be much more useful being Some informal carers may feel obliged to care, per- planned for.” (Healthcare professional/UK). ceive caregiving as a chance to give something in return to the person with dementia, or draw something positive Also, the needs of the informal carers and the needs of out of caregiving. the people with dementia may trigger the use of formal care. “…I feel a duty to take care of her (the person with dementia).” (Informal carer/IT). “Unless there are others who see and hear what’s going on and share some of the responsibility, one is tense Thus, formal care may be experienced as interfering, the whole time.” (Informal carer/SE). and relinquishing care may be regarded as a personal failure. Expecting to be stigmatised due to dementia may Depending on the healthcare system, the financial re- further impede someone from seeking help. The infor- sources of the family may be a strong determinant. In IE, mal carers may also be afraid of losing control and may for example, private services were perceived to offer find it difficult to accept strangers invading their privacy. better-quality care for people with dementia, and thus, the ability to pay for private services may facilitate and “But they just have to get used to the idea that they accelerate access. In general, the financial circumstances (professional helpers) have to come in (the person’s of the families may influence the decision on whether house).” (Informal carer/DE). formal care is used or not, particularly if private pay- ment is required. Moreover, strong emotions of the informal carer, such as fear and anxiety (e.g., fear of being separated from “The problem is that the majority of us [carers] cannot their relative with dementia), may further contribute to afford private home care, and the services provided by non-utilisation. In contrast, service use is facilitated the non-profit institutions do not meet our needs. For when informal carers are open-minded and seek support instance, support around the clock or during weekends proactively. Moreover, mutual help between informal is lacking.” (Informal carer/PT). carers may enhance the utilisation of formal care through increasing motivation and sharing information. Informal carers may further have strong personal mo- Characteristics and situation of the person with dementia tives for using formal care, e.g., to remain in employ- The attitude and beliefs of people with dementia towards ment and to reduce burden. the disease and towards formal care also considerably in- fluence the uptake of formal care. These attitudes were “The number of carers that approach us asking for mainly seen as a great hindrance across all the countries, support to assist their relative is increasing because primarily from the perspectives of the health and social they cannot miss work to provide care.” (Healthcare care professionals and the informal carers. People with professional/PT). dementia may have problems accepting the diagnosis, and because of the disease, they often lack awareness of A crisis was regularly seen to be a trigger for using for- their care needs. mal care, such as an accident, somatic disease, behav- ioural symptoms of the people with dementia, or the “We wish that she had much more help than she sudden inability of the informal carer to provide care. wants. But she doesn’t want to. That’s the case. Stephan et al. BMC Geriatrics (2018) 18:131 Page 8 of 16 Because she is not ‘ill’, and she is not ‘old’ either.” “When I got the diagnosis, I contacted the home health (Informal carer/NO). care nurse at once because I knew that I would need help sooner or later. And I started with the pills They further described that they felt a lack of infor- because we started to be anxious […].” (Person with mation about their condition and about services dementia/NO). available, particularly at the point of diagnosis. Accepting the diagnosis and adaptation process was described as being a long and demanding process, Expectations of health and social care professionals and and seeking support during this emotionally burden- formal care somephasemaynot bepossibledueto overwhelm- It became clear that people with dementia and infor- ing emotions. mal carers had no or only vague expectations regard- ing formal care. Informal carers in particular describe “You’re diagnosed and thrown out into the big world. more-general expectations, such as sharing the re- You don’t get told about any services.” (Person with sponsibility of caring for the person with dementia dementia/UK). and help making joint decisions regarding the care. Thus, they expect sufficient information to be pro- People with dementia clearly expressed their wish to vided to them by health and social care professionals remain independent and in control for as long as pos- regarding the condition of the person with dementia, sible and, thus, to be involved in decision-making about available services and financial support. their care. It emerged within these focus groups that formal care was considered a threat to individual in- “If you don’t know what you are looking for, it’s hard.” dependence by people with dementia and that it (Informal carer/IE). would only be accepted if it is perceived as absolutely necessary. They expected that support would be tailored to their needs, including timely help, awareness of psychological “As a client, you must pay attention that you do not and respite needs and the need for security of the person become too dependent […].” (Person with dementia/NL). with dementia. Health and social care professionals were aware that knowing about and fulfilling these expecta- However, it also became apparent that people rec- tions may be helpful. They knew that a firm diagnosis ognise that the moment will come when they have to and reliable information regarding the course of the dis- rely on the initiative of others in finding help, and ease, the legal aspects and the associated financial issues some participants reported retrospectively that the de- are expected of them. They further stated that people cision to use formal care had been prompted by with dementia and their families may require emotional others. Like the informal carers, people with dementia support, understanding of their (care) needs and respect also have clear personal motives to use formal care, for their personal situation. such as security issues or protecting family members from burdensome caregiving obligations or fulfilling Experiences with the uptake of formal care social needs. This appeared to also be a strong motive The experiences with formal care may encourage contin- for using services such as day care, where social activities ued use when people are satisfied, or these experiences take place, mutual support and social interaction can be may be off-putting and dissuade the families from using experienced. any further support when the contact with health and social care professionals was perceived as negative. The “For me, it’s important that my children can carry right moment for using formal care was controversial in on with their own lives.” (Person with dementia/ the discussions. In retrospect, informal carers in some DE). countries suggested that they started using professional help too late and that professional support should be “I always said I did not want to be a burden to my used from the very beginning. family. My children have so many concerns...work, their own kids.” (Person with dementia/PT). “The right time is when a person receives the diagnosis, basically.” (Informal carer/DE). Some people with dementia in early stages or with early onset dementia reported that they tried to find help “For Mum’s sake, give her a dignified life, not leave her and support proactively, which facilitated access to isolated. As relatives, we should have requested help services. much earlier.” (Informal carer/SE). Stephan et al. BMC Geriatrics (2018) 18:131 Page 9 of 16 Family structures and social environment They are not listening to the information I’m giving The family structure and the social environment further them.” (Person with dementia/IE). influence the utilisation of formal care, which was re- vealed in all types of focus groups. If no one advocates “And generally, anybody I would see is nearly in the for the person with dementia, it may take longer for the later stages of dementia. Very few are in the early person to receive a diagnosis and the required support. stages, where, you know, we could have had a lot more conversations of preventable work, and a lot of it is to “I think definitely accessing formal care is more often do with the stigma and the GP not wanting to take than not reliant on having somebody available, a that route.” (Health care professional/IE). carer, a friend, a neighbour, a child who is close by to encourage you to come forward.” (Healthcare Informal carers feel they need to be regarded as part- professional/UK). ners in caregiving, and their experience and knowledge should be valued. Conversely, the existence of a social network that allows the distribution of care responsibilities can stabilise the “I told the medical team that I was available to help caregiving situation at home and delay the uptake of ser- with my father and explained to them that my vices. A very close relationship between the person with presence soothed him, but they said it was not dementia and the informal carer (particularly among cou- necessary.” (Informal carer/PT). ples) may be another barrier to using formal care. Also of major importance are the competencies of the Healthcare professional A: “Exactly. ‘We’ve made a health and social care professionals,their dementia-specific promise to each other’.” knowledge,their knowledge about the individual person with dementia and their social competencies. Being sensitive Healthcare professional B: “‘We are going to be there to the needs of people, being open, supportive and em- for one another, no matter what happens. And now pathic and creating an atmosphere of warmth and kindness that’s what I’m sticking to’. You hear that relatively were emphasised constantly across all focus groups. These often, don’t you?” (Healthcare professionals/DE). aspects are particularly important in initial contact and for establishing a good and trusting relationship, which seemed “Probably it’s me. I unconsciously […] feel the duty to to be a major facilitator. take care of her. I mean, I feel the duty […]. I have always had a lot from my mother, being the only “[…] when the patient comes to our attention, it’sa child.” (Informal carer/IT). strategic moment from all points of view […] So, this moment is a determining moment, even if the patient, Being an informal carer with further family obligations or the relative, decides ‘I stay or I go away’.” (e.g., caring for own children) triggers the use of formal (Healthcare professional/IT). care, while disputes among family members may either trigger or hamper the use of formal care, particularly those “It is so good to talk to the dementia nurse when I am services typically decided upon by an informal carer. sad. She makes me smile.” (Person with dementia/ NO). Characteristics and strategies of the health and social care professionals Health and social care professionals apply a range Health and social care professionals as individuals may of strategies to enhance the use of formal care, such serve as a barrier or facilitator, and how they behave as establishing a bond of trust. This can be done by, plays a crucial role in the process of accessing and using e.g., ensuring continuity in staff, keeping in regular formal care. If they express negative attitudes and beliefs and frequent contact, gradually increasing support, towards dementia or people with dementia (e.g., that sharing decision making, constantly remaining ap- people with dementia are challenging care recipients or proachable, and using reasonable arguments to per- patronising behaviour) this may serve as a barrier, while suade the informal carer, a strategy that was respecting the person with dementia, considering their described as a sort of sales pitch by the health and capacity and rights and addressing their needs, are con- social care professionals. sidered facilitators. “I always try to tell them [the relatives], ‘If you collapse “I said to my own GP, I actually don’t want to see tomorrow, you won’t be helping your relative these doctors anymore because they are patronising. whatsoever. He’d have to go into a nursing home Stephan et al. BMC Geriatrics (2018) 18:131 Page 10 of 16 straightaway. So you must ensure that you get some “The experience for the person with dementia arriving relief ’.” (Healthcare professional/DE). in a respite setting can be very traumatising for them. They know that ‘I’m not in my own home, I’ve been brought here because Mary or John wants to go on Aspects related to the health- and social care systems holidays or they just need a break’ […].” (Healthcare Availability of services professional/IE). A lack of services was revealed in all types of focus groups but was more deeply discussed by informal From the perspectives of people with dementia and in- carers and health and social care professionals, particu- formal carers, having a single key contact person was an larly in the focus groups in DE, IE, NL, UK, PT and NO. important characteristic of services or service providers Needed but lacking services were, for example, in easing access. post-diagnostic support, night care, 24-h care on week- ends, respite care at home or services for people with Complexity of the system early onset dementia. Also, rigid criteria for accessing The complexity of the system was reported as a consid- services create difficulties and limit the accessibility of erable hindrance to access to formal care. Examples were services until the needs are significant. complex regulations and bureaucracy; disjointed nature of the system; too many care options with poorly defined “The criteria for social services seem to be getting responsibilities; system inconsistency and service in- steeper and steeper. […] If they do an assessment, equity across the country, causing a high degree of vari- they’ll say well you don’t have sufficient needs for us to ability and unclear roles among professionals; or simply get involved.” (Healthcare professional/UK). involving too many different health and social care pro- fessionals in supplying care. Insufficient financing of services and staff deficits were described as major hindrances resulting in dissatisfac- “… those safe key boxes. Somebody recently said that tion. Time constraints of health and social care profes- they had given the number to 13 people. Would you sionals are a result of these limited resources and were give your number and the key access to your house to reported in the focus groups in most countries. More- 13 people?” (Healthcare professional/IE). over, having enough resources and time was considered a facilitator. Although health and social care professionals acknowl- edged that a wide range of diverse services is needed to “And being able to have that time is also very positive meet the needs of the person with dementia and their for us as staff because then we are relaxed too and families, the complexity of services and regulations has really take our time.” (Healthcare professional/SE). to be reduced or people need better guidance in order to facilitate access to services. Features of the services Continuity The accessibility and utilisation of services is determined Avoiding fragmented services and unnecessary breaks by needs-tailored support that is flexible enough to meet (e.g., between the private and public sectors, acute and the individual needs and by the required payment, i.e., long-term care or health and social care), ensuring that services need to be affordable if they are not covered by the same staff take care of the person with dementia and insurance or are offered without out-of-pocket payment. establishing ongoing contact with people with dementia Most services are currently judged to be too and their families—not just during a crisis—would con- disease-focused, and psychological and social needs are tribute to continuity and facilitate access to formal care. often not appropriately considered, particularly from the Having a ‘key contact point/key contact person’ was de- perspective of health and social care professionals and scribed as an important aspect of continuity and was people with dementia. The co-location of dementia ser- mentioned by all stakeholders across the countries. vices with mental health services was reported to be po- While such a person is clearly reported to be lacking in tentially off-putting. However, meeting the needs of the most countries, the dementia coordinators in NO, which person with dementia and the informal carer through are in place in many municipalities across the country, formal care services can be quite challenging, as their seem to fulfil this function. needs may be divergent. For example, respite care can provide urgently needed relief for the informal carer but “The best thing I know is when we come in so early can be a burdensome experience for the person with that it is not necessary to bring in anyone else yet. dementia. When one actually can make a difference […]in Stephan et al. BMC Geriatrics (2018) 18:131 Page 11 of 16 relation to preparing for what’s to come.” (Healthcare the available services, and legal issues. This information professional/NO). is a crucial facilitator of access to services. “Well, I think a key worker role. I think a key worker “First, they [informal carers] don’t know, “Where role and a point of contact. So in other words, every should I go? Who should I ring?” They know that it time I give a diagnosis in the clinic, I should be able to exists, but how does one do it [apply for formal care]?” say, ‘Your point of contact is X.” (Health care (Healthcare professional/SE). professional/IE). Information should be easily accessible and, ideally, delivered by a key contact person who can select appro- priate information and repeat as necessary. Networking and collaboration Ensuring good collaboration among health and social “They have to have known what was going on. But care professionals emerged in the focus groups in all nobody ever approached us.” (Informal carer/IE). countries as an important facilitator that was deemed to contribute to appropriate and timely resource allocation. Public awareness Improved public awareness, for example, supported by “The network should simply work better. Often, the appropriate media campaigns, may contribute to the first way is to the neurologist or physician. But this has normalisation and de-stigmatisation of people with de- to be better coordinated.” (Informal carer/DE). mentia. It may also prevent banalisation of the disease and thus enhance the use of formal care. “It is so good here because we all work so close to one another, so you can go to the care administrator and “Everyone talks about AIDS, tuberculosis and other ask, Is this person on the register here? If not, it may diseases, but when it comes to Alzheimer’s, they say, be relevant soon.” (Healthcare professional/Sweden). Oh, the forgetfulness, it is part of the ageing process”. (Informal Carer/PT). The role of the general practitioner (GP) The GP is usually considered the first contact point. The Early contact GP makes a diagnosis or refers the patient to specialists, Early contact was considered an important facilitator provides information and assumes an initial gate-keeping from the perspectives of health and social care profes- function. However, GPs do not always fulfil their role in sionals and as a precondition to provide need-driven providing access to services in an appropriate way or con- care instead of sudden crisis intervention. Early contact sistently across the country. For example, they may not provides time to establish a bond of trust, to understand have sufficient knowledge about dementia or might be in- the family’s capacity to care and to get to know the per- attentive regarding first symptoms. son with dementia and their family as individuals. “I have to say, when I went to him [the GP] and I said, “As early as possible, simply so that one can think ‘I’m a bit worried about [husband’s] memory,’ do you about which system should be set up, what the know what he said to me? ‘Yes, the last time he was relatives can realistically cope with. As early as with me I thought there was something strange.’ Now possible.” (Healthcare professional/DE). the last time could have been six months before that. But he didn’t think it was worth his while to pick up “[…] They have to have known what was going on. But the phone and say, ‘Do you think there’s anything nobody ever approached us.” (Informal carer/IE). funny going on with your husband?” (Informal carer/ IE). While the view prevailed that contact should be estab- lished as early as possible, the timely use of formal care was considered quite dependent on individual circumstances. Overarching aspects Information “The right moment to start care is a combination of A need for better information emerged in most of the the estimated risk of danger and especially: what is the focus groups. Participants called for sufficient, clear, pre- quality of life of this person with dementia?” cise and comprehensible information about the disease, (Healthcare professional/NL). Stephan et al. BMC Geriatrics (2018) 18:131 Page 12 of 16 Discussion care services, and it supports the influence of psycho- To the best of our knowledge, this is the first study to social factors. The adapted model is based of qualitative combine the perspectives of all the main stakeholders in- focus groups with African-Americans and Caucasians volved in the process of accessing and using formal care and suggests that psychosocial aspects play a central role in dementia. While the majority of previous qualitative in explaining long-term service use, which may mediate research has focused solely on the perceptions of infor- the influences cultural backgrounds [36]. A recent mal carers, our study adds the perspectives of people meta-synthesis shows that comparable hindrances are with dementia. Accepting the diagnosis and adaptation experienced across people with culturally and process was described as being a long and demanding linguistically-diverse backgrounds, such as lack of know- process, and seeking support during this emotionally ledge or stigma related to mental health, but theses as- burdensome phase may not be possible, due to over- pects may be exaggerated by cultural habits [39]. We did whelming emotions. People with dementia expressed not attempt to investigate and compare cultural differ- their wish to remain independent and in control for as ences across the participating European countries. How- long as possible and, thus, to be involved in ever, we revealed tendencies that may reflect differences decision-making related to their care. Former research between countries. For example, family caregiving obli- has revealed that formal care can be an ambiguous gain. gations and stigma around mental health were more While it can include positive aspects, such as relief of clearly revealed within the focus groups in the Southern the informal carer, it may also increase uncertainty, countries PT and IT than in the North of Europe, espe- affect self-perception or disturb the relationship with the cially in NO. care recipient [31]. This also seems to be true for people To successfully overcome these major barriers, our with dementia. On the one hand, they describe certain study suggests that early and constant contact with a benefits of formal care, such as creating security or pro- health or social care professional is essential—irrespect- tecting the family from caregiving obligations, but on ive of the country. Such a key contact person should the other hand, they perceive formal care as a threat to proactively approach the families as early as possible. their independence. This perceived threat to independ- This person needs to create a trusting relationship with ence was described as a major barrier in using formal the people with dementia and their families; to recognise care, since it conflicts with the desire to stay independ- individual needs, beliefs and attitudes; to provide infor- ent and to protect autonomy, i.e., factors that are closely mation; and to offer counselling. Moreover, this person related to the quality of life of people with dementia should be approachable to the families throughout the [32]. Thus, they often tried to avoid formal care as long process of the disease. Interestingly, research shows that as possible. Moreover, the fact that the perspectives of informal carers of people with dementia retrospectively people with dementia were only rarely discussed by regret not having used services earlier [40], which was also healthcare professionals and informal carers, who mainly confirmed in our study. Informal carers and people with referred to the reluctance of people with dementia and dementia often have a lack knowledge about services, are their lack of insight into the disease, may show that unaware of the benefits thereof or do not consider them- people with dementia are still not equally included in selves as informal carers or as being in need of formal sup- the decision making process. Although participation and port. A key contact person who better knows the living independently are accepted principles in treating individual families could appropriately address these as- people with dementia—principles that have been pro- pects and better coordinate the range of different services moted by advocacy organisations for many years [33, that may be required when dementia progresses. The 34]—the transfer to everyday practice is still challenging, Actifcare study shows that only in Norway was such a key as our findings indicate. Insufficient consideration of contact person (in terms of a dementia care team imple- these principles still occurs across Europe and may hamper mented in most of the municipalities) regularly available access to and the use of needed and beneficial formal care [22]. This is important, as many countries have imple- services. mented case management approaches that may be benefi- The major influence of the attitudes and beliefs of the cial for people with dementia and their informal carers people with dementia and informal carers emerged as a [41] but that are not necessarily equal to the key contact principal aspect, one that was revealed in all three types person. Moreover, case management approaches do not of focus group. Accordingly, the decision to use formal automatically enhance the desire to stay independent of care may not be based merely on objective or perceived the person with dementia, which seems to be a key aspect needs but may also be influenced by a complex interplay to enhance access to formal care for people with demen- of psychological and social aspects [6, 35–37]. An adap- tia. Advance care planning may be a possible strategy to tation of the widely applied Behavioral Model of Health better engage people with dementia and enhance their au- Service Use [38] aims to explain the use of long-term tonomy with regard to using formal care [42]. However, Stephan et al. BMC Geriatrics (2018) 18:131 Page 13 of 16 advance care planning has so far predominantly been ap- Moreover, the cross-national synthesis necessarily had plied in institutional long-term care, mainly with a focus to be broader and could not explore in depth certain on end-of-life care, and evidence is lacking for people with country-specific, individual or service-related aspects dementia living within the community [42]. that may have an important impact. Beyond that, the findings of our European study con- Furthermore, the majority of healthcare professionals firm research findings regarding access to and use of for- had a nursing background, reflecting the large workforce mal care, such as a lack of knowledge regarding available of nurses in various sectors and functions within the services, misconceptions and stigma related to dementia, long-term dementia care system [46, 47]. Social care lack of services that focus on social needs and a complex professionals and GPs were underrepresented. This may healthcare systems that is difficult to navigate, all of be a limitation because GPs in particular are an import- which have been reported over the last decade [6, 9, 13, ant first contact point when accessing formal dementia 43, 44]. Our study shows that these barriers still occur in care [22], and they are the preferred source of help, fol- practice and that there is an urgent need to develop and lowing close family members [11]. The Actifcare project implement appropriate strategies and mechanisms to focused on formal long-term services for people with de- overcome these barriers. This is even more important mentia and their families and did not investigate the vol- when considering that the majority of European coun- untary sector [19]. Correspondingly, the focus groups tries have already launched national dementia strategies were organised with paid health care professionals, who in order to appropriately support people with dementia may have neglected an important perspective. and their informal carers [45]. According to the sampling criteria, people who had had any kind of experience with accessing or using formal care were included. Thus, we left out the group of people who Strengths and limitations never attempted to access formal support. A considerable Unlike many studies, our qualitative study was not lim- number of younger people with dementia were included. ited to informal carers but also included a considerable Their perspectives may be overrepresented by focusing number of people with dementia across eight European predominantly on expectations prior to using formal care. countries. The latter group has been widely neglected so This group also has considerably different needs, for ex- far in qualitative research addressing access to and util- ample, a changing family structure with teenage children isation of formal dementia care. [48], and their method of access and their experiences in The consistency and methodological rigor of the ana- using formal services may differ from those of older lysis process across the countries were ensured by devel- people with dementia. In SE, no focus group with people oping a manual that included a clear description of the with dementia could be conducted. In PT, people with de- data collection and analysis procedures. Furthermore, we mentia living in a long-term care institution were included aimed to provide a detailed and comprehensive report of because formal community support for people with de- the methodological steps. The strategy was shown to be mentia is widely lacking, and institutional long-term care practical and feasible and may contribute to a methodo- often constitutes the first experience with formal care. logical discussion on how to deal with qualitative data in Nevertheless, these participants were able to provide valu- transnational research. All steps were developed in close able insights from a Portuguese perspective. collaboration with all partners, and the synthesis of the The definition of formal care used within the Actifcare national reports was counterchecked by the national re- study was quite broad. Thus, the findings provide a gen- search teams in order to avoid misinterpretations, devia- eral overview of barriers and facilitators to the access to tions or omissions. Overall, quite comparable categories and use of formal care. Focusing on specific types of for- describing barriers and facilitators were found across the mal care and phases of dementia would offer a deeper types of groups and across the countries, supporting the and more focused understanding of barriers and facilita- credibility of the analysis. tors that are important in specific situations. Our study also has limitations that need to be ac- Finally, our findings have to be interpreted in light of knowledged. A predefined number of two focus groups the current political and economic situation of the eight per type were included, which is slightly below the rec- countries. Within the Dutch focus groups, for example, ommended number. This decision had to be made due a considerable level of uncertainty was expressed by the to the overall schedule of the European project. Some of participants due to the forthcoming legal changes and the (sub-) categories were not reported in all national expected financial cuts [49]. The economic austerity analyses, and it can only be speculated whether these as- faced in IE and PT may have increased the negative ex- pects are unimportant in these countries or whether pectations of available services [50, 51], while the they were not revealed due the limited number of focus current legal changes in DE are likely to improve the groups. situation of people with dementia and their families [52]. Stephan et al. BMC Geriatrics (2018) 18:131 Page 14 of 16 Conclusion Funding This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) Based on our findings, a health and social care profes- project (http://www.jpnd.eu). The project is supported through the following sional who serves as a key contact person could address national funding organisations under the aegis of JPND: Germany, Ministry of major barriers in the access to and use of formal care for Education and Research; Ireland, Health research board; Italy, Ministry of Health; the Netherlands, The Netherlands organisation for Health Research people with dementia and their informal carers. Contact and Development; Sweden, The Swedish Research Council for Health, Working with people with dementia and their families should be Life and Welfare; Norway, The Research Council of Norway; Portugal, initiated proactively and as early as possible, and a Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did trusting and consistent relationship needs to be estab- not influence the design of the study or the content of the manuscript. We lished. Further investigations are needed on how the acknowledge the financial support within the funding programme Open concept of a key contact person can be integrated Access Publishing by the German Research Foundation (DFG). with existing case management approaches and how Availability of data and materials the independence and autonomy of people with de- The datasets used and analysed are available from the Steering Committee mentia can be strengthened when formal care needs of the Actifcare study on reasonable request via the Coordinator, Frans Verhey (f.verhey@maastrichtuniversity.nl), or the Work Package 2 Leader, to be accessed and used. This may be a key facilitator Gabriele Meyer (gabriele.meyer@medizin.uni-halle.de). regarding enhanced access to formal care for people with dementia and their families. Authors’ contributions FV, MdV, CW, KI, MGP, BW, GM conceptualised the overall Actifcare study and applied for funding. AS, AB and GM (Work Package 2 leading team) developed the study protocol, the manual for data collection and analysis of Additional file the focus groups, in collaboration with the Actifcare partners. AS and AB conducted and analysed the focus groups in DE; LH and RJ in IE; OZ and EP Additional file 1: Actifcare_topic guide. The topic guide which was in IT; MdV, CW and LK in NL; SiE and JR in NO; MM and MGP in PT; BMS in used in the focus groups across all countries. (DOCX 47 kb) SE; and HJ and BW in the UK. AS and AB performed the cross-country analysis, which was checked and supported by all Actifcare partners. AS and AB drafted the manuscript, supported by GM. All authors critically reviewed and approved the final manuscript. Abbreviations Actifcare: ACcess to TImely Formal Care; DE: Germany; GP: General Competing interests Practitioner; IE: Ireland; IT: Italy; NL: The Netherlands; NO: Norway; GM is a member of the BMC Geriatrics editorial board, but was not involved PT: Portugal; SE: Sweden; UK: United Kingdom in the review process. Acknowledgements Publisher’sNote The Actifcare Consortium partners are as follows: Coordinator: Maastricht Springer Nature remains neutral with regard to jurisdictional claims in University (NL): Frans Verhey, professor (scientific coordinator, WP1 leader). published maps and institutional affiliations. Consortium members: Maastricht University (NL): Marjolein de Vugt, Claire Wolfs, Ron Handels, Liselot Kerpershoek. Martin Luther University Halle- Author details Wittenberg (DE): Gabriele Meyer (WP2 leader), Astrid Stephan, Anja Bieber, Institute for Health and Nursing Science, Martin Luther University Anja Broda, Gabriele Bartoszek. Bangor University (UK): Bob Woods (WP3 Halle-Wittenberg, Magdeburger Straße 8, 06112 Halle (Saale), Germany. leader), Hannah Jelley, Nottingham University (UK): Martin Orrell. Karolinska School of Nursing and Human Sciences, Dublin City University, Glasnevin, Institutet (SE): Anders Wimo (WP4 leader), Anders Sköldunger, Britt-Marie Dublin 9, Ireland. Alzheimer Unit, IRCCS S. Centro Giovanni di Dio Sjölund. Oslo University Hospital (NO): Knut Engedal, Geir Selbæk (WP5 “Fatebenefratelli”, Via Pilastroni 4, Brescia (BS), Italy. Alzheimer Center leader), Mona Michelet, Janne Røsvik, Siren Eriksen. Dublin City University (IE): Limburg, Maastricht University, Maastricht, The Netherlands. Norwegian Kate Irving (WP6 leader), Louise Hopper, Rachael Joyce. Alzheimer’s Research National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Unit-Memory Clinic, IRCCS “Centro S.Giovanni di Dio” (IT): Orazio Zanetti, Elisa Tønsberg, Norway. Department of Geriatric Medicine, Oslo University Portolani. CEDOC, Nova Medical School, Faculdade de Ciências Médicas, Hospital, Aldring og Helse, Oslo, Norway. Chronic Diseases Research Center, Universidade Nova de Lisboa (PT): Manuel Gonçalves-Pereira, Maria J. Mar- Nova Medical School | Faculdade de Ciências Médicas, Universidade Nova de ques, M. Conceição Balsinha, Helena Bárrios, Ana Machado (contributed to Lisboa, Campo Mártires da Pátria, 130, 1169-056 Lisbon, Portugal. Faculty of the focus group analysis). Health and Occupational Studies, Department of Health and Caring Sciences, University of Gävle, Gävle, Sweden. Dementia Services Development Centre Wales, Bangor University, Bangor LL57 2PZ, UK. Ethical approval and consent to participate: All participants gave their written informed consent; in all cases participants Received: 19 March 2017 Accepted: 14 May 2018 with dementia gave their own consent to participate in the study. 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Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

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Medicine & Public Health; Geriatrics/Gerontology; Aging; Rehabilitation
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Abstract

Background: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. (Continued on next page) * Correspondence: astrid.stephan@medizin.uni-halle.de; gabriele.meyer@medizin.uni-halle.de Astrid Stephan and Anja Bieber contributed equally to this work. Institute for Health and Nursing Science, Martin Luther University Halle-Wittenberg, Magdeburger Straße 8, 06112 Halle (Saale), Germany Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Stephan et al. BMC Geriatrics (2018) 18:131 Page 2 of 16 (Continued from previous page) Conclusion: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families. Keywords: Dementia, Person with dementia, Informal carer, Formal care, Utilisation, Focus groups Background those who do not. Moreover, the findings regarding di- Compared with other chronic conditions, dementia is verse types of services are often contradictory [12, 13]. more often a reason for care dependency among Recent qualitative studies add to the scope of know- older people [1]. People with dementia may become ledge and explore the process of seeking help and using dependent on help in several everyday activities early services but from the perspectives of informal carers in the progression of the disorder [2]and canhavea only [15, 16]. These studies show that informal carers wide range of needs, as too can their informal carers may sometimes perceive accessing and navigating [3]. Several types of support and community services health- and social care services as even more burden- may become necessary as the condition progresses [1, some than caregiving itself. Successful interaction be- 4]. In contrast, research has shown that people with tween formal and informal care is shaped by the trusting dementia and their informal carers use fewer services relationship and recognition between professionals and in comparison to other people in need of care [5, 6]. informal carers [17], and it requires improved profes- The findings of one systematic review show that med- sional understanding of the complex social relationships ical services are frequently used, whereas community and functioning of families [18]. services, such as home support, day care, respite care A scoping review that we performed of studies investi- or counselling, are used less often, even though these gating access to and use of services for people with de- services may be particularly helpful [7]. mentia and their families shows that people with The point in time when people with dementia and their dementia are rarely included in studies investigating ser- informal carers gain access to professional support and vice use, and if so, they often only serve as informants care may have implications for how the caregiving situ- regarding cognitive or functional and behavioural status. ation develops. Research suggests that the first phases of Very few studies have sought to understand barriers in the caregiving process are particularly important and that service use from the perspectives of people with dementia the timely use of community services potentially delays themselves, i.e., a case study focusing on certain ethnic institutionalisation [8]. groups or early onset dementia or that investigates service The results of an early study indicated that the most needs (unpublished work, manuscript submitted). important reason for the non-use of services was that in- A qualitative study including the perspectives of all formal carers did not consider services as necessary, al- stakeholders involved is lacking but may be particularly im- though a considerable level of burden was reported. The portant in order to comprehensively describe perceived reluctance of the person with dementia and a lack of barriers and facilitators in accessing and using formal com- knowledge about the services also contributed to munity care for people with dementia. Therefore, we ex- non-utilisation [9, 10]. plored the perspectives of all stakeholders involved in the Since then, the number of studies investigating the process of accessing and using formal care and services, use of services by people with dementia has in- namely, people with dementia, their informal carers and creased. Stigmatic beliefs about dementia and inad- health and social care professionals. We aimed to improve equate knowledge were found to be main barriers the understanding of the facilitators and barriers to the ac- preventing people from seeking help [11]. Recent sys- cess to and the use of formal dementia care for the further tematic reviews focus on factors influencing the service development of appropriate services and interventions. use of people with dementia and their informal carers, in- cluding community-dwelling people with dementia in Methods general [7, 12], only certain types of services such as res- The transnational research project Actifcare (ACess to pite care [6, 13], or they exclusively investigate male carers Timely Formal Care, http://www.actifcare.eu/) investi- [14]. The majority of these studies were observational gated the accessibility and utilisation of formal care for studies or surveys conducted in the USA, Canada and people with dementia and their informal carers in eight Australia, seeking to explain factors influencing the use of European countries: Germany (DE), Ireland (IE), Italy services by comparing people who are using services with (IT), the Netherlands (NL), Norway (NO), Portugal Stephan et al. BMC Geriatrics (2018) 18:131 Page 3 of 16 (PT), Sweden (SE) and the United Kingdom (UK). The making. Former informal carers were included, since main aim of the study is to analyse the pathways to care they could report a wide range of caregiving experiences. and to gain a better understanding of the reasons for in- Healthcare professionals had to be in regular contact equalities in access to health and social care. Thus, a co- with people with dementia and/or informal carers during hort study with dyads of people with dementia and their their daily work, either providing access to formal care informal carers over a one-year period was performed, or providing formal care and support for people with de- and their needs, service use patterns and quality of life mentia and their families. Relevant professional back- were assessed [19]. To further explore the barriers and grounds were determined by each country based on the facilitators to accessing and using formal care—as expe- inter-disciplinary nature of dementia care and access to rienced by people with dementia and their carers and dementia care in that country, which was investigated in health and social care professionals—a cross-national a preceding phase of the Actifcare project [22]. focus group study was conducted (Work Package 2 of the Actifcare Project). Focus groups are considered an Sampling appropriate approach, as they have the potential to en- Participants were contacted by gatekeepers (such as hance the understanding of factors that influence behav- counselling agencies, support groups and known contact iour or motivations [20, 21]. The findings of the focus persons from other parts of the project) and selected groups have also been used to inform subsequent parts according to the criteria described above, with the aim of the Actifcare study, in particular, single interviews of having a large variation in perspectives. Oral and writ- with national political decision makers/influencers and ten information about the study was provided by the semi-structured interviews with a subsample of the researchers. dyads from the cohort study. Formal dementia care was defined in accordance with Data collection the overall research protocol. It comprises home nursing An interview guide was developed in close collaboration care; day care services; and community, long-term med- with all partners to ensure the applicability across the ical and social care structures, such as respite services, countries, and it was piloted in Germany (09/2014). The multi-professional mental health teams and dementia interview guide was developed following a comprehen- care teams. It does not include acute medical services sive understanding of access to care [23] and thus fo- such as hospitals or specialised physicians. It also excludes cused on expectations or concerns prior to using formal domestic home help, housekeepers, volunteers, support care and personal experiences with accessing formal groups, transport services and meal programs [19]. care, as well as barriers and facilitators to the access to and utilisation of formal care. The topic guide was Group composition and participants slightly different per type of individual, but it followed Separate focus groups were performed with people with the same global topics (Additional file 1). In line with dementia, informal carers and healthcare professionals. the pilot study, it was found that discussing issues re- Focus groups typically consist of five to eight partici- garding formal care with people with dementia was chal- pants [20]. For the focus groups with older and cogni- lenging. To ease the discussion and clarify the topic, tively impaired people, we decided that smaller groups pictures showing typical caregiving situations were would be more appropriate, so three to four participants added to the questions for people with dementia [24]. were included. According to the study protocol of the The questions were carefully translated by each coun- Actifcare project, all types of dementia were included. try’s research team into their national language. Two ex- People with dementia had to be formally diagnosed. The perienced and trained researchers conducted the focus phase of dementia was not assessed prior to the focus groups in each country; one served as a moderator who groups. Informal carers took care of people with demen- fostered an active and open discussion, and the other tia from early to advanced stages of the disease. served as an assistant who took notes (field work took We included people with dementia and informal place between 09/2014 and 04/2015). All focus groups carers who had some kind of experience with accessing were audio recorded and transcribed intelligent verbatim and using formal care or who had at least tried to access (i.e., omitting filler expressions, redundant phrases or formal care in the past. words) for the purpose of content analysis. Informal carers could be relatives, friends or neigh- bours. The intention was for the sample to cover a wide Data analysis range of caregiving experiences, along with different ages So far, established guidelines on how to analyse cross-na- and different relationships to the person with dementia. tional qualitative data are lacking. Some published Informal carers had to have been in regular contact with cross-national studies have applied predetermined cat- the people with dementia and involved in care decision egories [25, 26]. We argue that predetermined categories Stephan et al. BMC Geriatrics (2018) 18:131 Page 4 of 16 may not appropriately reflect the diversity across the those with people with dementia tended to be shorter countries; therefore, qualitative content analysis using and lasted approximately 70 min (range 26–120 min). open coding was performed in each county [27, 28]. The mean group size was five participants (range 2–8 National findings were translated into English and synthe- participants; only one focus group with people with de- sised consecutively by the Work Package leading team mentia consisted of two participants). (DE). Overall, we followed an interpretive paradigm [29]. Participants National analysis In total, 261 participants took part in the focus groups To ensure consistency and methodological rigor [25], a (Table 1). People with dementia and their informal manual was provided to all the partners (available on re- carers used diverse services, including support groups, quest from the corresponding authors). To extract the con- counselling, educational training, help at home with so- tent, meaning units (e.g., sentences, paragraphs) were cial activities or personal care, community day centres, labelled with codes. Based on the codes, categories and day care, memory clinic, and respite care. In Ireland, the sub-categories were developed that were considered the United Kingdom, the Netherlands and Norway, interdis- manifest content of the transcripts [28]. The categories for ciplinary teams were in place in the community that the three types of focus groups were derived separately. took care of a number of participants. Only three infor- We followed the assumption that during this process, dia- mal carers and one person with dementia did not use logue among researchers promotes the most likely inter- any type of service. Four people with dementia in pretation of the data [28]. Thus, two researchers per Portugal lived in a nursing home and reported their ex- country independently derived initial codes based on the periences retrospectively. In Portugal, only a few com- most information-rich transcripts. Categories were then munity services are available, and institutional care is developed during a personal meeting. The remaining ma- often the first type of service. In most countries, it was terial was then analysed by one researcher applying the difficult to identify eligible people with dementia who categories. In a final step, the categories were introduced were able and willing to join a focus group. Since youn- to researchers not involved in the analysis in order to ger people with dementia and people in an early stage of check the plausibility. The national findings (in terms of dementia were easier to engage with, they were predom- categories, descriptions and anchor examples) were trans- inately included in some countries. Informal carers rep- lated into English. To increase the trustworthiness of the resented different caregiving situations and different translations, we followed the manual recommendations relationships to the people with dementia and were stipulating that the same person should perform all the more often female. Health and social care professionals translational work in each country [30]. had a mean working experience of 16 years and were mainly nurses, although there were also psychologists, Cross-national analysis social workers, general practitioners (GPs) and other The translated national findings were synthesised using a physicians. comparable approach as the one used in the national ana- lysis. Two researchers of the Work Package leading team (DE) independently derived first codes based on two country reports, and first cross-national categories were Findings developed during a joint meeting. The remaining reports Overall, we identified 16 categories describing influential were then analysed by using the derived categories; modi- aspects in accessing and using services that may serve as fications were possible throughout the analysis. As a final a barrier or facilitator. These categories were grouped step, the system of categories was reviewed and the cat- into three global themes in order to structure the syn- egories were sorted into global themes. To approve the thesis: 1) Aspects related to the individuals involved synthesis and to guarantee that no country-specific find- (characteristics of every individual involved), 2) Aspects ings were misinterpreted, the categories were discussed by related to the health- and social care system (such as all the partners using written feedback, video conferences available resources, regulations, features and design of and personal project meetings that took place twice per services), and 3) Overarching aspects (important on both year. The analysis was supported by the software MAXQ- levels). Although the categories were derived separately DAplus version 11 (VERBI GmbH, Berlin, Germany). for the three types of focus group, a considerable level of agreement, particularly in terms of the main categories, Results was revealed regarding barriers and facilitators to formal Description of the focus groups dementia care from the perspectives of people with de- Overall, 55 focus groups were performed. Each lasted, mentia, informal carers and health and social care pro- on average, approximately 90 min (range 26–140 min); fessionals (Table 2). Stephan et al. BMC Geriatrics (2018) 18:131 Page 5 of 16 Table 1 Overview of focus groups and characteristics of participants per country. Values are numbers unless stated otherwise People with dementia Total DE IE IT NL NO PT SE UK Number of focus groups 14 3 2 2 2 3 1 1 Number of participants 51 10 7 6 8 9 4 7 Number of female participants 28 7 6 4 2 4 3 2 Mean age, years (range) 76 (54–96) 68 (55–84) 68.5 (54–88) 80 (75–87) 76 (64–85) 75 (61–86) 90 (82–96) 75 (66–85) Mean time since diagnosis, 2.5 (0–10) 2.5 (0–7) 2 (1–5) ≤ 1 5.5 (0–10) 3.5 (1–6) 3.5 (2–5) 3 (1–6) years (range) Living alone/with family 16/31 4/6 3/4 2/4 4/4 2/7 – 1/6 member Informal carers Total DE IE IT NL NO PT SE UK Number of focus groups 21 5 3 2 2 2 2 2 3 Number of participants 96 21 16 8 10 7 11 8 15 Number of female participants 77 18 12 8 9 6 8 5 10 Mean age, years (range) 63 (37–91) 65 (47–83) 64 (50–89) 58 (49–70) 77 (68–86) 50 (37–66) 59 (43–78) 68 (56–91) 66 (46–84) Mean caregiving time, years 5(1–12) 4.5 (1–10) 7 (2–12) 6 (2–10) 5.5 (1–11) 4 (1–9) 4 (0–8) 3 (2–7) 4 (1–10) (range) Relationship to person with dementia Spouse 47 10 9 – 10 2 4 2 10 Child 42 8 7 8 – 37 5 4 Other 7 3 –– – 2 – 11 Healthcare professionals Total DE IE IT NL NO PT SE UK Number of focus groups 20 4 3 2 2 2 2 2 3 Number of participants 114 16 18 9 12 13 12 12 22 Number of female participants 98 12 17 6 11 13 11 12 16 Mean age, years (range) 45 (23–62) 49 (42–60) 42 (28–56) 45 (26–52) 42 (27–63) 46 (25–61) 41 (27–56) 52 (44–62) 42 (23–57) Mean working experience, 16 (0.25–42) 17 (3–30) 12 (2–25) 18 (1–26) 17 (3–35) 13 (0.25–30) 12 (2–30) 23 (7–42) 12 (0.25–30) years (range) Professional backgrounds Nurses 60 9 10 3 5 10 5 11 10 Social workers 6 3 1 1 –– 1 –– General Practitioners 5 1 – ––– 3 –– Other specialist physicians 6 1 2 –– – – 4 Psychologists 10 –– 16 – 1 – 2 Others 27 25 413 2 16 Registered, assistant or community mental health nurses Counsellors, educators, case managers People with dementia living in institutional long-term care n = 95 due to missing data Aspects related to the individuals involved towards formal care have a decisive impact and were Characteristics and situation of the informal carer predominantly described as reticent or negative, as The influence of the informal carers on formal care seen from the perspectives of the health and social use was comprehensively discussed by the health and care professionals. Informal carers may not perceive a social care professionals and informal carers but was need for help and may not identify themselves as only seldom mentioned by the people with dementia. ‘carers’, particularly in the early stages of the disease. A lack of knowledge and information regarding de- mentia and available services may hinder people from “It is, of course, a group that does not want to admit seeking help. The informal carers’ attitude and beliefs the problem, that there is something going wrong, and Stephan et al. BMC Geriatrics (2018) 18:131 Page 6 of 16 Table 2 Overview of (sub-) categories per type of focus group Categories and subcategories People with dementia Informal carers Health and Social Care Professionals 1) Aspects related to 1.1 Characteristics and situation of the informal carers the individuals � Attitude and beliefs towards � Being proactive � Knowledge/information involved formal care � Mutual help between informal carers � Attitude and beliefs towards � Attitude and beliefs towards formal formal care and dementia care and dementia � Emotions of the informal carer � Personal motives, need factors & � Personal motives & crisis as a trigger trigger situations � Financial resources 1.2 Characteristics and situation of the people with dementia � Attitude and beliefs towards formal � Attitude and beliefs towards formal � Attitude and beliefs towards formal care care and dementia care towards dementia ο perceiving formal care as a � Emotions threat to independence � Attitude and beliefs towards dementia/dealing with the disease � Being involved in decision making � Knowledge, information and experiences � Accepting the diagnosis & adaptation process � Being proactive/initiative of others � Personal motives to use formal care � Financial resources 1.3 Expectations of healthcare professionals and formal care � Lack of or uncertain expectations � Lack of or uncertain expectations � Firm diagnosis & reliable information � Joint decisions and shared responsibilities � Emotional support � Sufficient information � Understanding care needs � Need-tailored support 1.4 Experiences with the uptake of formal care � (Dis-)Satisfaction � (Dis-)Satisfaction � (Dis-)Satisfaction � Experiences towards the right moment of using formal care 1.5 Family structures and social environment 1.6 Characteristics & strategies of the health and social care professionals � Attitude towards dementia, people � Attitude towards dementia, people with � Attitude towards dementia, people with dementia and towards informal dementia and towards informal carers with dementia and towards informal carers � Competencies (knowledge and social carers � Relationship with health and social competences) � Competencies (knowledge and social care professionals � Trial visit competences) � Strategies of the health and social care professionals 2) Aspects related to 2.1 Availability of services the (health and � Lack of services � Lack of services � Lack of services (also regionally) social care) system � Staff deficits and insufficient financing � External barriers in utilisation (limited � Staff deficits and insufficient financing resources, insufficient financing, non- � Time constraints transparent structures) 2.2 Features of the services � Need-tailored services � Need-tailored services � Need-tailored services � Key contact person � Key contact person � Cost factor 2.3 Complexity of the system � Complex regulations � Complex regulations � Complex regulations � Disjointed nature of the system � Disjointed nature of the system � Disjointed nature of the system � Variability of the system/unclear roles 2.4 Continuity � Key contact point/key contact person � Key contact point/key contact person � Key contact point/key contact person Stephan et al. BMC Geriatrics (2018) 18:131 Page 7 of 16 Table 2 Overview of (sub-) categories per type of focus group (Continued) Categories and subcategories People with dementia Informal carers Health and Social Care Professionals 2.5 Networking & collaboration 2.6 Role of the general practitioner (GP) 3) Over-arching 3.1 Information aspects 3.2 Public awareness 3.3 Early contact I see many cases where they try to conceal it as long as “Often, it does come to crisis. People can be plodding possible.” (Healthcare professional/NL). on quite nicely. One of them goes into hospital and then it’s a crisis. It would be much more useful being Some informal carers may feel obliged to care, per- planned for.” (Healthcare professional/UK). ceive caregiving as a chance to give something in return to the person with dementia, or draw something positive Also, the needs of the informal carers and the needs of out of caregiving. the people with dementia may trigger the use of formal care. “…I feel a duty to take care of her (the person with dementia).” (Informal carer/IT). “Unless there are others who see and hear what’s going on and share some of the responsibility, one is tense Thus, formal care may be experienced as interfering, the whole time.” (Informal carer/SE). and relinquishing care may be regarded as a personal failure. Expecting to be stigmatised due to dementia may Depending on the healthcare system, the financial re- further impede someone from seeking help. The infor- sources of the family may be a strong determinant. In IE, mal carers may also be afraid of losing control and may for example, private services were perceived to offer find it difficult to accept strangers invading their privacy. better-quality care for people with dementia, and thus, the ability to pay for private services may facilitate and “But they just have to get used to the idea that they accelerate access. In general, the financial circumstances (professional helpers) have to come in (the person’s of the families may influence the decision on whether house).” (Informal carer/DE). formal care is used or not, particularly if private pay- ment is required. Moreover, strong emotions of the informal carer, such as fear and anxiety (e.g., fear of being separated from “The problem is that the majority of us [carers] cannot their relative with dementia), may further contribute to afford private home care, and the services provided by non-utilisation. In contrast, service use is facilitated the non-profit institutions do not meet our needs. For when informal carers are open-minded and seek support instance, support around the clock or during weekends proactively. Moreover, mutual help between informal is lacking.” (Informal carer/PT). carers may enhance the utilisation of formal care through increasing motivation and sharing information. Informal carers may further have strong personal mo- Characteristics and situation of the person with dementia tives for using formal care, e.g., to remain in employ- The attitude and beliefs of people with dementia towards ment and to reduce burden. the disease and towards formal care also considerably in- fluence the uptake of formal care. These attitudes were “The number of carers that approach us asking for mainly seen as a great hindrance across all the countries, support to assist their relative is increasing because primarily from the perspectives of the health and social they cannot miss work to provide care.” (Healthcare care professionals and the informal carers. People with professional/PT). dementia may have problems accepting the diagnosis, and because of the disease, they often lack awareness of A crisis was regularly seen to be a trigger for using for- their care needs. mal care, such as an accident, somatic disease, behav- ioural symptoms of the people with dementia, or the “We wish that she had much more help than she sudden inability of the informal carer to provide care. wants. But she doesn’t want to. That’s the case. Stephan et al. BMC Geriatrics (2018) 18:131 Page 8 of 16 Because she is not ‘ill’, and she is not ‘old’ either.” “When I got the diagnosis, I contacted the home health (Informal carer/NO). care nurse at once because I knew that I would need help sooner or later. And I started with the pills They further described that they felt a lack of infor- because we started to be anxious […].” (Person with mation about their condition and about services dementia/NO). available, particularly at the point of diagnosis. Accepting the diagnosis and adaptation process was described as being a long and demanding process, Expectations of health and social care professionals and and seeking support during this emotionally burden- formal care somephasemaynot bepossibledueto overwhelm- It became clear that people with dementia and infor- ing emotions. mal carers had no or only vague expectations regard- ing formal care. Informal carers in particular describe “You’re diagnosed and thrown out into the big world. more-general expectations, such as sharing the re- You don’t get told about any services.” (Person with sponsibility of caring for the person with dementia dementia/UK). and help making joint decisions regarding the care. Thus, they expect sufficient information to be pro- People with dementia clearly expressed their wish to vided to them by health and social care professionals remain independent and in control for as long as pos- regarding the condition of the person with dementia, sible and, thus, to be involved in decision-making about available services and financial support. their care. It emerged within these focus groups that formal care was considered a threat to individual in- “If you don’t know what you are looking for, it’s hard.” dependence by people with dementia and that it (Informal carer/IE). would only be accepted if it is perceived as absolutely necessary. They expected that support would be tailored to their needs, including timely help, awareness of psychological “As a client, you must pay attention that you do not and respite needs and the need for security of the person become too dependent […].” (Person with dementia/NL). with dementia. Health and social care professionals were aware that knowing about and fulfilling these expecta- However, it also became apparent that people rec- tions may be helpful. They knew that a firm diagnosis ognise that the moment will come when they have to and reliable information regarding the course of the dis- rely on the initiative of others in finding help, and ease, the legal aspects and the associated financial issues some participants reported retrospectively that the de- are expected of them. They further stated that people cision to use formal care had been prompted by with dementia and their families may require emotional others. Like the informal carers, people with dementia support, understanding of their (care) needs and respect also have clear personal motives to use formal care, for their personal situation. such as security issues or protecting family members from burdensome caregiving obligations or fulfilling Experiences with the uptake of formal care social needs. This appeared to also be a strong motive The experiences with formal care may encourage contin- for using services such as day care, where social activities ued use when people are satisfied, or these experiences take place, mutual support and social interaction can be may be off-putting and dissuade the families from using experienced. any further support when the contact with health and social care professionals was perceived as negative. The “For me, it’s important that my children can carry right moment for using formal care was controversial in on with their own lives.” (Person with dementia/ the discussions. In retrospect, informal carers in some DE). countries suggested that they started using professional help too late and that professional support should be “I always said I did not want to be a burden to my used from the very beginning. family. My children have so many concerns...work, their own kids.” (Person with dementia/PT). “The right time is when a person receives the diagnosis, basically.” (Informal carer/DE). Some people with dementia in early stages or with early onset dementia reported that they tried to find help “For Mum’s sake, give her a dignified life, not leave her and support proactively, which facilitated access to isolated. As relatives, we should have requested help services. much earlier.” (Informal carer/SE). Stephan et al. BMC Geriatrics (2018) 18:131 Page 9 of 16 Family structures and social environment They are not listening to the information I’m giving The family structure and the social environment further them.” (Person with dementia/IE). influence the utilisation of formal care, which was re- vealed in all types of focus groups. If no one advocates “And generally, anybody I would see is nearly in the for the person with dementia, it may take longer for the later stages of dementia. Very few are in the early person to receive a diagnosis and the required support. stages, where, you know, we could have had a lot more conversations of preventable work, and a lot of it is to “I think definitely accessing formal care is more often do with the stigma and the GP not wanting to take than not reliant on having somebody available, a that route.” (Health care professional/IE). carer, a friend, a neighbour, a child who is close by to encourage you to come forward.” (Healthcare Informal carers feel they need to be regarded as part- professional/UK). ners in caregiving, and their experience and knowledge should be valued. Conversely, the existence of a social network that allows the distribution of care responsibilities can stabilise the “I told the medical team that I was available to help caregiving situation at home and delay the uptake of ser- with my father and explained to them that my vices. A very close relationship between the person with presence soothed him, but they said it was not dementia and the informal carer (particularly among cou- necessary.” (Informal carer/PT). ples) may be another barrier to using formal care. Also of major importance are the competencies of the Healthcare professional A: “Exactly. ‘We’ve made a health and social care professionals,their dementia-specific promise to each other’.” knowledge,their knowledge about the individual person with dementia and their social competencies. Being sensitive Healthcare professional B: “‘We are going to be there to the needs of people, being open, supportive and em- for one another, no matter what happens. And now pathic and creating an atmosphere of warmth and kindness that’s what I’m sticking to’. You hear that relatively were emphasised constantly across all focus groups. These often, don’t you?” (Healthcare professionals/DE). aspects are particularly important in initial contact and for establishing a good and trusting relationship, which seemed “Probably it’s me. I unconsciously […] feel the duty to to be a major facilitator. take care of her. I mean, I feel the duty […]. I have always had a lot from my mother, being the only “[…] when the patient comes to our attention, it’sa child.” (Informal carer/IT). strategic moment from all points of view […] So, this moment is a determining moment, even if the patient, Being an informal carer with further family obligations or the relative, decides ‘I stay or I go away’.” (e.g., caring for own children) triggers the use of formal (Healthcare professional/IT). care, while disputes among family members may either trigger or hamper the use of formal care, particularly those “It is so good to talk to the dementia nurse when I am services typically decided upon by an informal carer. sad. She makes me smile.” (Person with dementia/ NO). Characteristics and strategies of the health and social care professionals Health and social care professionals apply a range Health and social care professionals as individuals may of strategies to enhance the use of formal care, such serve as a barrier or facilitator, and how they behave as establishing a bond of trust. This can be done by, plays a crucial role in the process of accessing and using e.g., ensuring continuity in staff, keeping in regular formal care. If they express negative attitudes and beliefs and frequent contact, gradually increasing support, towards dementia or people with dementia (e.g., that sharing decision making, constantly remaining ap- people with dementia are challenging care recipients or proachable, and using reasonable arguments to per- patronising behaviour) this may serve as a barrier, while suade the informal carer, a strategy that was respecting the person with dementia, considering their described as a sort of sales pitch by the health and capacity and rights and addressing their needs, are con- social care professionals. sidered facilitators. “I always try to tell them [the relatives], ‘If you collapse “I said to my own GP, I actually don’t want to see tomorrow, you won’t be helping your relative these doctors anymore because they are patronising. whatsoever. He’d have to go into a nursing home Stephan et al. BMC Geriatrics (2018) 18:131 Page 10 of 16 straightaway. So you must ensure that you get some “The experience for the person with dementia arriving relief ’.” (Healthcare professional/DE). in a respite setting can be very traumatising for them. They know that ‘I’m not in my own home, I’ve been brought here because Mary or John wants to go on Aspects related to the health- and social care systems holidays or they just need a break’ […].” (Healthcare Availability of services professional/IE). A lack of services was revealed in all types of focus groups but was more deeply discussed by informal From the perspectives of people with dementia and in- carers and health and social care professionals, particu- formal carers, having a single key contact person was an larly in the focus groups in DE, IE, NL, UK, PT and NO. important characteristic of services or service providers Needed but lacking services were, for example, in easing access. post-diagnostic support, night care, 24-h care on week- ends, respite care at home or services for people with Complexity of the system early onset dementia. Also, rigid criteria for accessing The complexity of the system was reported as a consid- services create difficulties and limit the accessibility of erable hindrance to access to formal care. Examples were services until the needs are significant. complex regulations and bureaucracy; disjointed nature of the system; too many care options with poorly defined “The criteria for social services seem to be getting responsibilities; system inconsistency and service in- steeper and steeper. […] If they do an assessment, equity across the country, causing a high degree of vari- they’ll say well you don’t have sufficient needs for us to ability and unclear roles among professionals; or simply get involved.” (Healthcare professional/UK). involving too many different health and social care pro- fessionals in supplying care. Insufficient financing of services and staff deficits were described as major hindrances resulting in dissatisfac- “… those safe key boxes. Somebody recently said that tion. Time constraints of health and social care profes- they had given the number to 13 people. Would you sionals are a result of these limited resources and were give your number and the key access to your house to reported in the focus groups in most countries. More- 13 people?” (Healthcare professional/IE). over, having enough resources and time was considered a facilitator. Although health and social care professionals acknowl- edged that a wide range of diverse services is needed to “And being able to have that time is also very positive meet the needs of the person with dementia and their for us as staff because then we are relaxed too and families, the complexity of services and regulations has really take our time.” (Healthcare professional/SE). to be reduced or people need better guidance in order to facilitate access to services. Features of the services Continuity The accessibility and utilisation of services is determined Avoiding fragmented services and unnecessary breaks by needs-tailored support that is flexible enough to meet (e.g., between the private and public sectors, acute and the individual needs and by the required payment, i.e., long-term care or health and social care), ensuring that services need to be affordable if they are not covered by the same staff take care of the person with dementia and insurance or are offered without out-of-pocket payment. establishing ongoing contact with people with dementia Most services are currently judged to be too and their families—not just during a crisis—would con- disease-focused, and psychological and social needs are tribute to continuity and facilitate access to formal care. often not appropriately considered, particularly from the Having a ‘key contact point/key contact person’ was de- perspective of health and social care professionals and scribed as an important aspect of continuity and was people with dementia. The co-location of dementia ser- mentioned by all stakeholders across the countries. vices with mental health services was reported to be po- While such a person is clearly reported to be lacking in tentially off-putting. However, meeting the needs of the most countries, the dementia coordinators in NO, which person with dementia and the informal carer through are in place in many municipalities across the country, formal care services can be quite challenging, as their seem to fulfil this function. needs may be divergent. For example, respite care can provide urgently needed relief for the informal carer but “The best thing I know is when we come in so early can be a burdensome experience for the person with that it is not necessary to bring in anyone else yet. dementia. When one actually can make a difference […]in Stephan et al. BMC Geriatrics (2018) 18:131 Page 11 of 16 relation to preparing for what’s to come.” (Healthcare the available services, and legal issues. This information professional/NO). is a crucial facilitator of access to services. “Well, I think a key worker role. I think a key worker “First, they [informal carers] don’t know, “Where role and a point of contact. So in other words, every should I go? Who should I ring?” They know that it time I give a diagnosis in the clinic, I should be able to exists, but how does one do it [apply for formal care]?” say, ‘Your point of contact is X.” (Health care (Healthcare professional/SE). professional/IE). Information should be easily accessible and, ideally, delivered by a key contact person who can select appro- priate information and repeat as necessary. Networking and collaboration Ensuring good collaboration among health and social “They have to have known what was going on. But care professionals emerged in the focus groups in all nobody ever approached us.” (Informal carer/IE). countries as an important facilitator that was deemed to contribute to appropriate and timely resource allocation. Public awareness Improved public awareness, for example, supported by “The network should simply work better. Often, the appropriate media campaigns, may contribute to the first way is to the neurologist or physician. But this has normalisation and de-stigmatisation of people with de- to be better coordinated.” (Informal carer/DE). mentia. It may also prevent banalisation of the disease and thus enhance the use of formal care. “It is so good here because we all work so close to one another, so you can go to the care administrator and “Everyone talks about AIDS, tuberculosis and other ask, Is this person on the register here? If not, it may diseases, but when it comes to Alzheimer’s, they say, be relevant soon.” (Healthcare professional/Sweden). Oh, the forgetfulness, it is part of the ageing process”. (Informal Carer/PT). The role of the general practitioner (GP) The GP is usually considered the first contact point. The Early contact GP makes a diagnosis or refers the patient to specialists, Early contact was considered an important facilitator provides information and assumes an initial gate-keeping from the perspectives of health and social care profes- function. However, GPs do not always fulfil their role in sionals and as a precondition to provide need-driven providing access to services in an appropriate way or con- care instead of sudden crisis intervention. Early contact sistently across the country. For example, they may not provides time to establish a bond of trust, to understand have sufficient knowledge about dementia or might be in- the family’s capacity to care and to get to know the per- attentive regarding first symptoms. son with dementia and their family as individuals. “I have to say, when I went to him [the GP] and I said, “As early as possible, simply so that one can think ‘I’m a bit worried about [husband’s] memory,’ do you about which system should be set up, what the know what he said to me? ‘Yes, the last time he was relatives can realistically cope with. As early as with me I thought there was something strange.’ Now possible.” (Healthcare professional/DE). the last time could have been six months before that. But he didn’t think it was worth his while to pick up “[…] They have to have known what was going on. But the phone and say, ‘Do you think there’s anything nobody ever approached us.” (Informal carer/IE). funny going on with your husband?” (Informal carer/ IE). While the view prevailed that contact should be estab- lished as early as possible, the timely use of formal care was considered quite dependent on individual circumstances. Overarching aspects Information “The right moment to start care is a combination of A need for better information emerged in most of the the estimated risk of danger and especially: what is the focus groups. Participants called for sufficient, clear, pre- quality of life of this person with dementia?” cise and comprehensible information about the disease, (Healthcare professional/NL). Stephan et al. BMC Geriatrics (2018) 18:131 Page 12 of 16 Discussion care services, and it supports the influence of psycho- To the best of our knowledge, this is the first study to social factors. The adapted model is based of qualitative combine the perspectives of all the main stakeholders in- focus groups with African-Americans and Caucasians volved in the process of accessing and using formal care and suggests that psychosocial aspects play a central role in dementia. While the majority of previous qualitative in explaining long-term service use, which may mediate research has focused solely on the perceptions of infor- the influences cultural backgrounds [36]. A recent mal carers, our study adds the perspectives of people meta-synthesis shows that comparable hindrances are with dementia. Accepting the diagnosis and adaptation experienced across people with culturally and process was described as being a long and demanding linguistically-diverse backgrounds, such as lack of know- process, and seeking support during this emotionally ledge or stigma related to mental health, but theses as- burdensome phase may not be possible, due to over- pects may be exaggerated by cultural habits [39]. We did whelming emotions. People with dementia expressed not attempt to investigate and compare cultural differ- their wish to remain independent and in control for as ences across the participating European countries. How- long as possible and, thus, to be involved in ever, we revealed tendencies that may reflect differences decision-making related to their care. Former research between countries. For example, family caregiving obli- has revealed that formal care can be an ambiguous gain. gations and stigma around mental health were more While it can include positive aspects, such as relief of clearly revealed within the focus groups in the Southern the informal carer, it may also increase uncertainty, countries PT and IT than in the North of Europe, espe- affect self-perception or disturb the relationship with the cially in NO. care recipient [31]. This also seems to be true for people To successfully overcome these major barriers, our with dementia. On the one hand, they describe certain study suggests that early and constant contact with a benefits of formal care, such as creating security or pro- health or social care professional is essential—irrespect- tecting the family from caregiving obligations, but on ive of the country. Such a key contact person should the other hand, they perceive formal care as a threat to proactively approach the families as early as possible. their independence. This perceived threat to independ- This person needs to create a trusting relationship with ence was described as a major barrier in using formal the people with dementia and their families; to recognise care, since it conflicts with the desire to stay independ- individual needs, beliefs and attitudes; to provide infor- ent and to protect autonomy, i.e., factors that are closely mation; and to offer counselling. Moreover, this person related to the quality of life of people with dementia should be approachable to the families throughout the [32]. Thus, they often tried to avoid formal care as long process of the disease. Interestingly, research shows that as possible. Moreover, the fact that the perspectives of informal carers of people with dementia retrospectively people with dementia were only rarely discussed by regret not having used services earlier [40], which was also healthcare professionals and informal carers, who mainly confirmed in our study. Informal carers and people with referred to the reluctance of people with dementia and dementia often have a lack knowledge about services, are their lack of insight into the disease, may show that unaware of the benefits thereof or do not consider them- people with dementia are still not equally included in selves as informal carers or as being in need of formal sup- the decision making process. Although participation and port. A key contact person who better knows the living independently are accepted principles in treating individual families could appropriately address these as- people with dementia—principles that have been pro- pects and better coordinate the range of different services moted by advocacy organisations for many years [33, that may be required when dementia progresses. The 34]—the transfer to everyday practice is still challenging, Actifcare study shows that only in Norway was such a key as our findings indicate. Insufficient consideration of contact person (in terms of a dementia care team imple- these principles still occurs across Europe and may hamper mented in most of the municipalities) regularly available access to and the use of needed and beneficial formal care [22]. This is important, as many countries have imple- services. mented case management approaches that may be benefi- The major influence of the attitudes and beliefs of the cial for people with dementia and their informal carers people with dementia and informal carers emerged as a [41] but that are not necessarily equal to the key contact principal aspect, one that was revealed in all three types person. Moreover, case management approaches do not of focus group. Accordingly, the decision to use formal automatically enhance the desire to stay independent of care may not be based merely on objective or perceived the person with dementia, which seems to be a key aspect needs but may also be influenced by a complex interplay to enhance access to formal care for people with demen- of psychological and social aspects [6, 35–37]. An adap- tia. Advance care planning may be a possible strategy to tation of the widely applied Behavioral Model of Health better engage people with dementia and enhance their au- Service Use [38] aims to explain the use of long-term tonomy with regard to using formal care [42]. However, Stephan et al. BMC Geriatrics (2018) 18:131 Page 13 of 16 advance care planning has so far predominantly been ap- Moreover, the cross-national synthesis necessarily had plied in institutional long-term care, mainly with a focus to be broader and could not explore in depth certain on end-of-life care, and evidence is lacking for people with country-specific, individual or service-related aspects dementia living within the community [42]. that may have an important impact. Beyond that, the findings of our European study con- Furthermore, the majority of healthcare professionals firm research findings regarding access to and use of for- had a nursing background, reflecting the large workforce mal care, such as a lack of knowledge regarding available of nurses in various sectors and functions within the services, misconceptions and stigma related to dementia, long-term dementia care system [46, 47]. Social care lack of services that focus on social needs and a complex professionals and GPs were underrepresented. This may healthcare systems that is difficult to navigate, all of be a limitation because GPs in particular are an import- which have been reported over the last decade [6, 9, 13, ant first contact point when accessing formal dementia 43, 44]. Our study shows that these barriers still occur in care [22], and they are the preferred source of help, fol- practice and that there is an urgent need to develop and lowing close family members [11]. The Actifcare project implement appropriate strategies and mechanisms to focused on formal long-term services for people with de- overcome these barriers. This is even more important mentia and their families and did not investigate the vol- when considering that the majority of European coun- untary sector [19]. Correspondingly, the focus groups tries have already launched national dementia strategies were organised with paid health care professionals, who in order to appropriately support people with dementia may have neglected an important perspective. and their informal carers [45]. According to the sampling criteria, people who had had any kind of experience with accessing or using formal care were included. Thus, we left out the group of people who Strengths and limitations never attempted to access formal support. A considerable Unlike many studies, our qualitative study was not lim- number of younger people with dementia were included. ited to informal carers but also included a considerable Their perspectives may be overrepresented by focusing number of people with dementia across eight European predominantly on expectations prior to using formal care. countries. The latter group has been widely neglected so This group also has considerably different needs, for ex- far in qualitative research addressing access to and util- ample, a changing family structure with teenage children isation of formal dementia care. [48], and their method of access and their experiences in The consistency and methodological rigor of the ana- using formal services may differ from those of older lysis process across the countries were ensured by devel- people with dementia. In SE, no focus group with people oping a manual that included a clear description of the with dementia could be conducted. In PT, people with de- data collection and analysis procedures. Furthermore, we mentia living in a long-term care institution were included aimed to provide a detailed and comprehensive report of because formal community support for people with de- the methodological steps. The strategy was shown to be mentia is widely lacking, and institutional long-term care practical and feasible and may contribute to a methodo- often constitutes the first experience with formal care. logical discussion on how to deal with qualitative data in Nevertheless, these participants were able to provide valu- transnational research. All steps were developed in close able insights from a Portuguese perspective. collaboration with all partners, and the synthesis of the The definition of formal care used within the Actifcare national reports was counterchecked by the national re- study was quite broad. Thus, the findings provide a gen- search teams in order to avoid misinterpretations, devia- eral overview of barriers and facilitators to the access to tions or omissions. Overall, quite comparable categories and use of formal care. Focusing on specific types of for- describing barriers and facilitators were found across the mal care and phases of dementia would offer a deeper types of groups and across the countries, supporting the and more focused understanding of barriers and facilita- credibility of the analysis. tors that are important in specific situations. Our study also has limitations that need to be ac- Finally, our findings have to be interpreted in light of knowledged. A predefined number of two focus groups the current political and economic situation of the eight per type were included, which is slightly below the rec- countries. Within the Dutch focus groups, for example, ommended number. This decision had to be made due a considerable level of uncertainty was expressed by the to the overall schedule of the European project. Some of participants due to the forthcoming legal changes and the (sub-) categories were not reported in all national expected financial cuts [49]. The economic austerity analyses, and it can only be speculated whether these as- faced in IE and PT may have increased the negative ex- pects are unimportant in these countries or whether pectations of available services [50, 51], while the they were not revealed due the limited number of focus current legal changes in DE are likely to improve the groups. situation of people with dementia and their families [52]. Stephan et al. BMC Geriatrics (2018) 18:131 Page 14 of 16 Conclusion Funding This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) Based on our findings, a health and social care profes- project (http://www.jpnd.eu). The project is supported through the following sional who serves as a key contact person could address national funding organisations under the aegis of JPND: Germany, Ministry of major barriers in the access to and use of formal care for Education and Research; Ireland, Health research board; Italy, Ministry of Health; the Netherlands, The Netherlands organisation for Health Research people with dementia and their informal carers. Contact and Development; Sweden, The Swedish Research Council for Health, Working with people with dementia and their families should be Life and Welfare; Norway, The Research Council of Norway; Portugal, initiated proactively and as early as possible, and a Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did trusting and consistent relationship needs to be estab- not influence the design of the study or the content of the manuscript. We lished. Further investigations are needed on how the acknowledge the financial support within the funding programme Open concept of a key contact person can be integrated Access Publishing by the German Research Foundation (DFG). with existing case management approaches and how Availability of data and materials the independence and autonomy of people with de- The datasets used and analysed are available from the Steering Committee mentia can be strengthened when formal care needs of the Actifcare study on reasonable request via the Coordinator, Frans Verhey (f.verhey@maastrichtuniversity.nl), or the Work Package 2 Leader, to be accessed and used. This may be a key facilitator Gabriele Meyer (gabriele.meyer@medizin.uni-halle.de). regarding enhanced access to formal care for people with dementia and their families. Authors’ contributions FV, MdV, CW, KI, MGP, BW, GM conceptualised the overall Actifcare study and applied for funding. AS, AB and GM (Work Package 2 leading team) developed the study protocol, the manual for data collection and analysis of Additional file the focus groups, in collaboration with the Actifcare partners. AS and AB conducted and analysed the focus groups in DE; LH and RJ in IE; OZ and EP Additional file 1: Actifcare_topic guide. The topic guide which was in IT; MdV, CW and LK in NL; SiE and JR in NO; MM and MGP in PT; BMS in used in the focus groups across all countries. (DOCX 47 kb) SE; and HJ and BW in the UK. AS and AB performed the cross-country analysis, which was checked and supported by all Actifcare partners. AS and AB drafted the manuscript, supported by GM. All authors critically reviewed and approved the final manuscript. Abbreviations Actifcare: ACcess to TImely Formal Care; DE: Germany; GP: General Competing interests Practitioner; IE: Ireland; IT: Italy; NL: The Netherlands; NO: Norway; GM is a member of the BMC Geriatrics editorial board, but was not involved PT: Portugal; SE: Sweden; UK: United Kingdom in the review process. Acknowledgements Publisher’sNote The Actifcare Consortium partners are as follows: Coordinator: Maastricht Springer Nature remains neutral with regard to jurisdictional claims in University (NL): Frans Verhey, professor (scientific coordinator, WP1 leader). published maps and institutional affiliations. Consortium members: Maastricht University (NL): Marjolein de Vugt, Claire Wolfs, Ron Handels, Liselot Kerpershoek. Martin Luther University Halle- Author details Wittenberg (DE): Gabriele Meyer (WP2 leader), Astrid Stephan, Anja Bieber, Institute for Health and Nursing Science, Martin Luther University Anja Broda, Gabriele Bartoszek. Bangor University (UK): Bob Woods (WP3 Halle-Wittenberg, Magdeburger Straße 8, 06112 Halle (Saale), Germany. leader), Hannah Jelley, Nottingham University (UK): Martin Orrell. Karolinska School of Nursing and Human Sciences, Dublin City University, Glasnevin, Institutet (SE): Anders Wimo (WP4 leader), Anders Sköldunger, Britt-Marie Dublin 9, Ireland. Alzheimer Unit, IRCCS S. Centro Giovanni di Dio Sjölund. Oslo University Hospital (NO): Knut Engedal, Geir Selbæk (WP5 “Fatebenefratelli”, Via Pilastroni 4, Brescia (BS), Italy. Alzheimer Center leader), Mona Michelet, Janne Røsvik, Siren Eriksen. Dublin City University (IE): Limburg, Maastricht University, Maastricht, The Netherlands. Norwegian Kate Irving (WP6 leader), Louise Hopper, Rachael Joyce. Alzheimer’s Research National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Unit-Memory Clinic, IRCCS “Centro S.Giovanni di Dio” (IT): Orazio Zanetti, Elisa Tønsberg, Norway. Department of Geriatric Medicine, Oslo University Portolani. CEDOC, Nova Medical School, Faculdade de Ciências Médicas, Hospital, Aldring og Helse, Oslo, Norway. Chronic Diseases Research Center, Universidade Nova de Lisboa (PT): Manuel Gonçalves-Pereira, Maria J. Mar- Nova Medical School | Faculdade de Ciências Médicas, Universidade Nova de ques, M. Conceição Balsinha, Helena Bárrios, Ana Machado (contributed to Lisboa, Campo Mártires da Pátria, 130, 1169-056 Lisbon, Portugal. Faculty of the focus group analysis). Health and Occupational Studies, Department of Health and Caring Sciences, University of Gävle, Gävle, Sweden. Dementia Services Development Centre Wales, Bangor University, Bangor LL57 2PZ, UK. Ethical approval and consent to participate: All participants gave their written informed consent; in all cases participants Received: 19 March 2017 Accepted: 14 May 2018 with dementia gave their own consent to participate in the study. 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BMC GeriatricsSpringer Journals

Published: Jun 4, 2018

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