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Article ( see attachment )https://www.researchgate.net/publication/334024921_Persons_with_Dementia_Living_at_Home_or_in_Nursing_Homes_in_Nine_Swedish_Urban_or_Rural_Municipalities Write a 3- to 5-paragraph critique of the article. In your critique, include responses to the following:What is the research design used by the authors?Why did the authors use correlation or bivariate regression?Do you think it’s the most appropriate choice? Why or why not?Did the authors display the data?Do the results stand alone? Why or why not?Did the authors report effect size? If yes, is this meaningful? persons_with_dementia_living_at_home_or_in_nursing.pdf Unformatted Attachment Preview healthcare Article Persons with Dementia Living at Home or in Nursing Homes in Nine Swedish Urban or Rural Municipalities Connie Lethin 1,2, * , Ingalill Rahm Hallberg 1 , Emme-Li Vingare 3 and Lottie Giertz 3 1 2 3 * Department of Health Sciences, Faculty of Medicine, Lund University, 22100 Lund, Sweden; ingalill.rahm_hallberg@med.lu.se Department of Clinical Sciences, Clinical Memory Research Unit, Faculty of Medicine, Lund University, 21224 Malmö, Sweden Department of Social Work, Faculty of Social Sciences, Linnaeus University, 35195 Växjö, Sweden; emmeli.vingare@lnu.se (E.-L.V.); lottie.giertz@lnu.se (L.G.) Correspondence: connie.lethin@med.lu.se; Tel.: +46-46-2221812 Received: 2 April 2019; Accepted: 21 June 2019; Published: 25 June 2019



 Abstract: The methodology from the “RightTimePlaceCare” study of dementia care was tested locally in terms of relevance, acceptability and attrition. Comparing persons with dementia (PwDs) receiving home care (HC) with PwDs living in nursing homes (NHs), in urban versus rural areas, regarding their health conditions and informal caregiver burden was also done. Standardized measurements regarding sociodemographic, and physical and mental health was used. Questions related to legal guardianship were added. Interviews were conducted with PwDs and their caregivers in HC (n = 88) and in NHs (n = 58). Bivariate and multivariate logistic regression analysis was used. The attrition rate was higher in HC. In the bivariate regression model, for HC and NH, living at home was significantly associated with more severe neuropsychiatric symptoms (p ≤ 0.001) and being cared by a spouse (p = 0.008). In NH, the informal caregivers were significantly younger (p = 0.003) and living in rural areas (p = 0.007) and more often in paid work (p ≤ 0.001). In the multivariate regression model, informal caregivers were significantly younger (p = 0.007) when caring for a PwD in an NH and caregiver burden was significantly higher in HC and in urban areas (p = 0.043). Legal guardianship was very low. Professionals should acknowledge that PwDs in HC have more behavioural problems and caregivers in urban areas report higher caregiver burden. Keywords: dementia; dementia not otherwise specified; decision-making; healthcare; informal caregivers; informal caregiving; social services; quality of life 1. Introduction One major societal challenge in Sweden and worldwide is the rapidly growing older population implying an increasing prevalence of dementia and, consequently, a greater need for care [1–3]. Older people are at higher risk for various chronic diseases and dementia is among the most common age-related condition [4,5]. Persons with dementia have been shown to be more likely to have comorbidity complexes, such as Parkinson’s disease, stroke, diabetes, atherosclerosis, incontinence and pneumonia, which may stay undetected due to the dementia disease [6]. As the disease progresses, the person will be more dependent on informal and formal care to manage activities of daily living (ADLs) [7]. Neurocognitive symptoms occur throughout the dementia trajectory and the most common symptoms are agitation, mood disorders and psychosis [8]. Persons with dementia will develop one or more behavioural and psychological symptoms of dementia (BPSD) with an impact on quality of life (QoL) and caregiver burden. At some point also depressive symptoms occur during the course of Healthcare 2019, 7, 80; doi:10.3390/healthcare7020080 www.mdpi.com/journal/healthcare Healthcare 2019, 7, 80 2 of 13 dementia (close to 80\% of all persons with dementia) and some of them may have a major depressive disorder (10–20\%) [9]. The progressive course of the disease requires a well-elaborated chain of care to achieve optimal QoL for persons with dementia and also to support the informal caregiver. Informal caregivers are often the main provider of care and service for persons with dementia living at home [10,11]. They may experience the caregiving as positive [12] but are also at increased risk for burden, stress, depression and other health complications [11,13]. A challenge for professionals in dementia care is to deliver timely, individualized quality care and support both in urban and in rural areas and to follow up the care and treatment for persons with dementia and their informal caregivers. Depending on how public responsibility is distributed, there may be difficulties in rural municipalities to provide sufficient care due to financial strain. Also, there is a need for methods to follow up the quality of care that can be feed-back to the public providers. Because of an increase in cognitive impairment, having dementia disease means intrusion into a person’s life and the life of the people surrounding the person [14,15]. Due to the detrimental impact on cognitive ability from the disease, there is also a need to explore how legal aspects are handled within municipal care and services, including for instance, whether guardianship is established. Dementia diseases are progressive which implies that the need for healthcare and social services (care and services) changes throughout the course of dementia. It is well known that the opportunity to move into a nursing home is limited meaning that several persons with severe dementia is cared for at home. This may cause strain on the informal caregivers. The knowledge is scarce, both regarding the effort needed through the course of the disease and regarding the timing when care in ordinary housing or residential housing becomes appropriate. Knowledge is also limited regarding how to design support for the family that has responsibility for the person’s everyday care [16]. In the European (EU)-funded study RightTimePlaceCare (RTPC) the care and service systems, from diagnosis to end of life, in eight European countries were investigated between 2010 and 2013 to capture the national situation regarding dementia care, compared between the countries and develop best practice [17]. The RTPC study consisted of two parts: an interview study exploring the living conditions of persons with dementia and their informal caregivers living at home with home care or living in nursing homes and a mapping study exploring the care and service systems available [18]. The project titled “Living with dementia, care and service systems” (also known as the LwD-study) was inspired by the RTPC project and its main objective was to develop best practice strategies for dementia care locally. The mapping system was tested and further developed in the LwD study for adaption to a local Swedish context. The mapping system was tested and further developed in the LwD study for adaption to a local Swedish context and was found useful and reliable [19]. In this part of the LwD study, the circumstances and living conditions of persons with dementia receiving formal and informal care when living at home or in nursing homes as well as conditions for their informal caregivers were investigated. This was so since it is the main responsibility of the local providers. Furthermore, we studied factors influencing the person with dementias institutionalization at the time of admission to a nursing home and the availability and utilization of care and services throughout the dementia trajectory as well as professional providers’ educational level. Emphasis was on QoL and the quality of care of persons with dementia and informal caregiver burden and QoL of informal caregivers of persons with dementia in nursing homes and home care. The LwD-study generated primary data at a local level on the transition from professional home care to nursing homes for persons with dementia and their informal caregivers in nine municipalities, urban and rural. The expectations were that this study would make the professionals aware of the needs of the individual as well as their informal caregivers and of problems that need to be alleviated. The first aim of this study was, in collaboration with professionals, to adapt the methodology from a European study to local circumstances in terms of relevance, acceptability and attrition (the feasibility) of the methodology in nine Swedish municipalities. The second aim was to compare persons with dementia living at home to persons with dementia living in nursing homes regarding, sociodemographic status, physical and mental health, independence, behavioural symptoms and the question of guardianship. Healthcare 2019, 7, 80 3 of 13 For their informal caregivers, sociodemographic circumstances, paid work and caregiver burden were investigated. The third and final aim was to compare persons with dementia living at home to persons with dementia living in nursing homes and to compare conditions for their informal caregivers in urban versus rural municipalities regarding the same outcomes as for the second aim. 2. Materials and Methods 2.1. The Swedish Context In Sweden, the care of persons with dementia is a shared responsibility between the counties and the municipalities. The county councils are responsible for health care in accordance with the Health and Medical Services Act [20]. Medical healthcare such as screening, dementia diagnosis and medical treatment is available at primary healthcare centres or specialized clinics at hospitals and is mainly provided by the county councils. In terms of the Social Services Act [21] municipalities have the responsibility for care of the citizens who are 65 years or older. The municipalities are responsible for general and specialized care and services in home care and nursing homes and also for respite care and day care. They are expected to enable older people to stay in their ordinary housing for as long as possible under safe circumstances supported with care and services whenever needed. Social services also have a special responsibility to support the informal caregivers. Both healthcare and social services in Sweden are publicly funded through taxes. This in turn means that the tax income in rural areas is dependent on people in the work force and if a large share is retired or not in working the municipality will have difficulties to provide the care and support needed for their older population. The distribution can be by public authorities although there has been an increase in marketization during the last decade. All assessment is based on voluntary participation with consent from the care and service recipient. 2.2. Design This cross-sectional study was conducted in nine municipalities situated in two counties in the south of Sweden. The municipalities were invited to a meeting regarding this project. Written information describing the LwD project was sent to all executives of eldercare in one county. All eight municipalities within one county participated, all falling under the same healthcare organization. The ninth municipality was located in the closest neighbouring county and the meeting there was initiated by the local authorities. Written consent, with a mutual responsibility to contribute to the research, was obtained from the participating municipalities. 2.3. Adaption of the Methodology The study was adapted to Swedish conditions to enable comparison between the municipalities, illuminate available resources and to give feedback to politicians and people in charge of the care and service system in the municipalities. A reference group was established with representatives from all participating municipalities consisting of professionals, such as social workers, registered dementia nurses and eldercare managers and care coordinators. The entire project was discussed, including; recruiting process; the relevance of the questions included in the interview and the acceptability of the procedure. In addition, questions about legal guardians were brought up, along with other questions of interest. To achieve consensus, the research team and the reference group had face-to-face meetings four to five times a year complemented by e-mail messages. Since aspects related to legal guardianship is the responsibility of the municipality questions about how and by whom this was handled. Persons with extensively reduced decision-making ability may need assistance and support from a substitute decision-maker and legal representative in their contact with the care and service systems as well as of handling their economic and legal affairs. Legal guardianship is a responsibility of the municipality following a district court judgment. It is a formal response to the person’s impaired decision-making ability through the appointment of a substitute Healthcare 2019, 7, 80 4 of 13 decision-maker. Guardianship can include handling of the client’s finances and monitoring of his or her legal rights. According to the Parental Code [22] the municipality has the responsibility to recruit and control legal guardians and assist the district court in the investigation before judgment is made. 2.4. Procedure Baseline and follow-up interviews were conducted with persons with dementia and their informal caregivers from March 2014 to July 2016. A follow-up interview was performed 80–100 days after the baseline interview, if the person or caregiver agreed to this. Nine months after the baseline interview, the contact person in each participating municipality made a report on the living situation of the person with dementia regarding survival and present housing. All instruments used were selected based on their psychometric properties and appropriateness for the aim and population. Questionnaires were translated into Swedish according to a standardized procedure from the RTPC project [17]. Professionals (registered dementia nurses, registered nurses, social workers and eldercare managers) were asked to recruit possible participants after being informed about inclusion and exclusion criteria and instructed how to inform persons with dementia and their informal caregivers about the LwD project. To standardize the data collection and assure data quality, a manual was developed consisting of two parts: preparation for the interviews with information about the selection of institutions and participants and instructions for interviewers; and the interview content, explaining the measurement assessments used during the interviews and current ethical codes. Furthermore, special training was provided to the professionals by the researches. The trained interviewers collected all data performing face-to-face interviews. In 2015, three students in social work or nursing and one social worker were trained as interviewers and conducted altogether 17 interviews. 2.5. Recruitment of Participants Inclusion criteria for persons with dementia were being 65 years of age or older, having a primary dementia diagnosis, scoring 24 or lower on the Standardized Mini-Mental State Examination (S-MMSE) [23] and having an informal caregiver visit at least twice a month. The number of informal caregivers was limited to one main caregiver, defined as the person who was most involved in the care of the person with dementia (partners, adult children, other relatives or others such as friends or neighbours). Persons with dementia (and their informal caregivers) who were between the margins of care were eligible for the study; that is, persons who were at the point when home care may become insufficient or inadequate and who were facing admission to a nursing home within 6 months. This process may be initiated when the informal caregiver can no longer handle the situation or the person with dementias care dependency increases and the needs cannot be sufficiently met by community services or informal care. The judgment of risk was made by a professional caregiver for example, a registered dementia nurse or a social worker. Also eligible for the study, were persons with dementia who had recently been judged eligible for nursing home care. In the research design, the plan was to include 85 persons with dementia and informal caregiver dyads in home care and 60 dyads in nursing homes. The interviews in the nursing homes were conducted 1–3 months after the person with dementia had moved there. Persons with dementia eligible for nursing home care for a limited period to provide respite care at home were excluded. At the first contact, professionals in the municipalities proposed 175 persons with dementia–caregiver dyads from both urban (≥20,000 inhabitants) and rural areas (<20,000 inhabitants), to participate in this study and were given verbal informed consent. At the second contact by researchers, 146 (83\%) persons with dementia and their informal caregivers chose to participate in the study and gave written informed consent (see Supplementary file of descriptive data of the inhabitants in the participating municipalities and the study’s attrition rate). At baseline, 88 interviews were conducted with persons with dementia and their informal caregivers in home care and 58 interviews in nursing homes. Altogether 274 interviews were conducted, at baseline and at a follow up after 3 months. Healthcare 2019, 7, 80 5 of 13 2.6. Measurements Before each interview, the cognitive function of the person with dementia was tested to meet the inclusion criteria (Table 1). Sociodemographic information on persons with dementia included age, gender, dementia diagnosis, marital status and living situation for the persons with dementia (i.e., living at home versus in a nursing home). Other measurements for persons with dementia were rated by proxy (informal caregivers in home care or formal caregivers in nursing homes) regarding QoL and physical and psychological health. Measurements for informal caregivers included sociodemographic information regarding age, gender, marital status, having paid work and relationship to the person with dementia (not for nursing homes). Furthermore, the interviews contained questions regarding caregiver burden, QoL and the use of legal guardianship. See Verbeek et al. [17] for a more detailed description of measurements. Table 1. Measurements included and related to the situation of the person with dementia. Variable Assessment ADLs Proxy Behaviour Proxy * Caregiver burden Informal caregiver Cognition Person with dementia Comorbidity Proxy Depression Proxy Guardianship Proxy Person with dementia and proxy Proxy Quality of life Socio-demographics Measure Katz Index of Independence in ADLs (Katz-ADL) Neuropsychiatric inventory questionnaire (NPI-Q) Zarit Burden Interview (ZBI) Standardized Mini-Mental State Examination (S-MMSE) Charlson Comorbidity Index (CCI) Cornell Scale for Depression in Dementia (CSDD) Datasheet Quality of life in Alzheimer’s disease (QoL-AD) Datasheet No. of Items 6 12 22 20 n/a 19 21 13 n/a ADL = activities of daily living; n/a = not applicable. * Answered by informal caregivers at home and formal caregivers in nursing homes. 2.7. Analysis Bivariate logistic regression analysis was performed for associated factors for persons with dementia living at home or in nursing homes and in urban versus rural areas. As the intention was to conduct 13 separate analyses for persons with dementia, we adjusted using Bonferroni correction, therefore for this analysis p ≤ 0.003 was regarded as significant. For informal caregivers, the intention was to conduct 6 separate analysis and when adjusted using Bonferroni correction, p ≤ 0.008 was regarded as significant. Backward stepwise multivariate regression analysis was performed for urban and rural areas. For the multivariate regression analysis, a p-value of p ≤ 0.05 was regarded as significant. For all analyses, SPSS version 25.0 was used (IBM Corp., Armonk, NY, USA). For the analysis, the variables urban (municipalities 2, 5, 6, 7 and 9) and rural areas (municipalities 1, 3, 4 and 8) were dichotomized into 1 = urban area and 0 = rural area. 2.8. Ethical ... Purchase answer to see full attachment