To explore barriers in access to dementia care in Turkish, Pakistani and Arabic speaking minority ethnic groups in Denmark.
Semi-structured qualitative individual- and group interviews with minority ...ethnic family carers, primary care dementia coordinators, staff in elderly daycare, and multicultural link workers. Hermeneutic phenomenology was used as theoretical framework.
A total of 21 individual- and 6 group interviews were conducted, including a total of 35 participants. On the service user side, barriers in access to dementia care were related to lacking language proficiency and strong cultural norms, including familial responsibility for the care of older family members and stigma associated with mental illness and dementia. On the care provider side, the available formal services were rarely tailored to the specific needs of minority ethnic service users and were often considered inadequate or unacceptable.
Care practices and perceived consequences of dementia in minority ethnic communities were heavily influenced by cultural factors leading to a number of persisting barriers to accessing dementia care services. There is a simultaneous need to raise awareness about dementia and the existence of dementia care services in minority ethnic groups, to reduce stigma, and to develop culturally appropriate dementia care options.
Celotno besedilo
Dostopno za:
BFBNIB, DOBA, IZUM, KILJ, NUK, OILJ, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
•Self-reported alcohol consumption should be supplemented by biomarkers.•Assessment on self-reported alcohol intake should cover a relevant time span.•Biomarkers should be direct markers of ...alcohol.•Biomarkers should cover a relevant time span.•Inconsistency between self-reported alcohol consumption and biomarkers may occur.
No systematic review has yet examined the consistency between self-reports of alcohol consumption and alcohol biomarkers among patients in treatment for alcohol use disorders (AUD). Therefore, we aimed to provide an overview of the consistency between self-reported alcohol intake and biomarkers among patients in treatment for AUD.
The electronical databases MEDLINE, PsycINFO, EMBASE, Cochrane Database of Systematic Reviews (CDSR) and CENTRAL were searched for all original studies that examined the validity of self-reported alcohol consumption using a biological marker in samples of patients with AUD. Eligible studies were included in a qualitative synthesis of the outcomes. Quality assessment was conducted with the quality assessment tool for Observational Cohort and Cross-sectional studies, developed by The National Heart, Lung and Blood Institute.
The search identified 7672 hits, and 11 papers comprising 13 eligible studies were included. All the identified studies revealed inconsistencies between self-reporting and biomarkers. Under-reporting was the most common type of inconsistency across short-, intermediate- and long-term biomarkers. For short-term markers, under-reporting was indicated in 7 studies (n = 15–585) in a range from 5.5%–56.0% of the patients, and over-reporting in 2 studies (n = 34–65) in a range from 5.9%–74.1%. Only under-reporting was reported for intermediate-term, direct markers and was indicated in 2 studies (n = 18–54) in a range from 5.0%–50.0% of the patients. Although the results for long-term biomarkers were not reported consistently across the studies, under-reporting was indicated in 3 studies (n = 73–1580) in a range from 0.1%–40.0% of the patients, and over-reporting in 2 studies (n = 15–1580) in a range from 13.0%–70.6%. Correlations between self-reported alcohol consumption and biological markers were strongest for the intermediate-term direct markers, ranging from moderate to strong. For short-term and long-term markers, the correlations were mostly weak. Most of the studies were quality rated as fair.
The findings indicate that inconsistency between self-reported alcohol consumption and biomarkers may occur in a considerable proportion of patients with AUD. However, further studies applying more sensitive, specific, and easily assessable biological markers are warranted to confirm this preliminary synthesis.
PROSPERO registration no.: CRD42018105308
OBJECTIVES
To summarize available tools that can assist clinicians in identifying and reducing or stopping (deprescribing) potentially inappropriate medications and that specifically consider frailty ...or limited life expectancy.
DESIGN
Systematic review and narrative synthesis.
SETTING
We searched MEDLINE (via Ovid SP), EMBASE (via Ovid SP), and CINAHL from inception to December 2017, along with grey literature. We included articles that described a tool to guide deprescribing of medications.
PARTICIPANTS
Frail older persons and older persons with limited life expectancy.
MEASUREMENTS
Narrative description of tools.
RESULTS
We identified 15 tools and organized them into three main categories: tools (n = 2) that described a model or framework for approaching deprescribing, tools (n = 9) that outlined a deprescribing approach for the entire medication list, and tools (n = 4) that provided medication‐specific advice. The complexity of the tools ranged from simple lists to detailed, step‐wise protocols. The development methodology varied widely, and the methods used to synthesize the tools were generally not well described. Most tools were based on expert opinion. Only four of the 15 tools have been tested in clinical practice (in very low‐quality studies).
CONCLUSION
Tools exist to help clinicians deprescribe in frail older persons and those with limited life expectancy. These tools may assist clinicians at various stages in the deprescribing process. However, it remains to be investigated whether use of such tools in practice is likely to improve clinical outcomes or reduce inappropriate medication use. J Am Geriatr Soc 67:172–180, 2019.
Objectives
Proactive efforts that take language and cultural barriers into consideration may be needed to raise awareness of dementia and improve access to services in minority ethnic communities. ...The aim of this study was to assess the feasibility of a culturally tailored dementia information program and the immediate effects on participants' intention to seek help for memory problems, their knowledge and beliefs about dementia, and their knowledge about options for support.
Methods
A novel dementia information program, consisting of one 2‐h session, was developed through a collaborative research process with primary care dementia coordinators and multicultural link workers as co‐researchers. It provides basic knowledge about dementia to minority ethnic communities and can be delivered in a community setting by non‐specialists.
Results
Six information program sessions were conducted with a total of 110 participants; 65 Turkish, 19 Pakistani, 20 Arabic‐speaking, and 6 with another minority ethnic heritage. The program had a significant effect on participants' immediate knowledge and beliefs about dementia as measured with a quiz (z = −2.02, p = 0.04, d = 0.90). In a post‐program focus group meeting, facilitating multicultural link workers reported satisfaction with facilitator training, adopted recruitment strategies, and content and delivery of the information sessions and provided feedback on improving the program.
Conclusions
The results provide support for the feasibility of the culturally tailored dementia information program. The program has the potential to improve knowledge and beliefs about dementia and options for formal support in minority ethnic communities and seems easily implemented in existing services, and at a low cost.
Key points
Limited basic knowledge about dementia and normalizing and stigmatizing views of Alzheimer's disease is common in Turkish, Pakistani and Arabic speaking communities in Denmark, who remain under‐represented in diagnostic, support, and care services for people with dementia.
Mainstream campaigns and educational programs to increase awareness and knowledge about dementia rarely reach minority ethnic groups and it has been suggested that more proactive efforts that take language and cultural barriers into consideration are needed.
A dementia information program tailored to the cultural and language needs of Turkish, Pakistani and Arabic communities was developed through a collaborative research process with primary care dementia coordinators and multicultural link workers as co‐researchers.
Study results support the feasibility a dementia information program for minority ethnic communities facilitated by multicultural link workers with basic theoretical training in dementia and provide some evidence for positive effects of the program on participants' immediate intention to seek help for memory problems, their knowledge and beliefs about dementia, and their knowledge about options for formal support.
Background
People from minority ethnic groups are under-represented in dementia diagnosis, treatment, and care. The aim of this study was to examine barriers to accessing post-diagnostic care and ...support in minority ethnic communities from the perspective of primary care dementia coordinators in Denmark.
Method
A survey questionnaire investigating issues related to provision of care and support services in minority ethnic communities was conducted among 41 primary care dementia coordinators representing all Danish geographic regions. Responses were primarily based on five-point Likert scales. Results from geographic regions with different rates of people from minority ethnic communities with dementia were compared.
Results
Among the surveyed dementia coordinators, 95% generally thought that providing dementia care and support services to minority ethnic service users was challenging. Strategies for overcoming cultural and linguistic barriers were generally sparse. Uptake of most post-diagnostic services was perceived to be influenced by service users’ minority ethnic background. Communication difficulties, poor knowledge about dementia among minority ethnic service users, inadequate cultural sensitivity of care workers, and a lack of suitable dementia services for minority ethnic communities were highlighted as some of the main barriers. Not surprisingly, 97% generally found minority ethnic families to be more involved in provision of personal care and support compared to ethnic Danish families.
Conclusion
There is a need to develop methods and models for post-diagnostic care and support that include cultural awareness and diversity for interacting with different cultural communities.
Background
Although minority ethnic families have a lower uptake of dementia care services, little research has explored how minority ethnic carers cope with and manage dementia care in their ...everyday lives. The aim of this study was to investigate organization of family dementia care in Turkish, Pakistani, and Arabic speaking minority ethnic families from the perspective of family carers, primary care dementia coordinators, and multicultural link workers in Denmark.
Methods
Semi-structured qualitative individual and group interviews with minority ethnic family carers, primary care dementia coordinators, and multicultural link workers. Hermeneutic phenomenology was used as theoretical framework and results were analyzed using thematic analysis.
Results
A total of 21 individual and four group interviews were conducted, including a total of 30 participants. A key finding was that the care responsibility was usually shared between several family members, who took turns to provide 24-hour care for the person with dementia. Rotational 24-hour care, either by having the person with dementia live with different family members or by having different family members take turns to move in with the person with dementia, emerged as a common alternative to formal care. Another important finding was that despite decreasing the burden of care of individual family carers, rotational care could be confusing and stressful to the person with dementia and could have a negative impact on the quality of life of all involved.
Conclusion
The way minority ethnic families organize dementia care have implications for understanding and communicating about support needs. Higher reliance on shared family care should not be taken to indicate that minority ethnic communities are not in need of support from formal services.
Purpose: To explore and describe the experience of people having young-onset dementia.
Methods: This was a qualitative study that used semi-structured interviews to collect data from nine persons ...with young-onset dementia (aged 47-65; five men and four women). Data were collected in the spring of 2018. All interviews were conducted at the participants' choice and in their own homes by one interviewer. The collected data were analysed using the six-stage process of reflexive thematic analysis model.
Results: The analysis revealed three themes: Dementia causing loss of control over oneself; becoming a burden to the family while sense of self disappears; and fearing a humiliating future.
Conclusions: The experience of having and living with young onset dementia affected the persons' thoughts and memory and was experienced through the persons' loss of personality and sense of self. Thoughts about the future were associated with fear, and the risk of changing their personalities to something different from the one which they had experienced as humiliating throughout most of their lives.
•Little is known about “cognitive enhancers” in alcohol-related disorders.•Previous reviews have focused on patients with more severe neurocognitive deficits.•Preliminary evidence suggests modafinil ...as a putative transdiagnostic agent.•Clonidine and fluvoxamine may be effective for alcohol related dementias.•More research on “cognitive enhancers” in alcohol-related disorders are needed.
Debilitating neurocognitive deficits are seen in alcohol use disorders (AUD) and Wernicke-Korsakoff’s syndrome (WKS). These shared characteristics suggest a spectrum of alcohol-induced neurocognitive disorders (AIND). Cognitive pharmacological enhancing agents (CPEA) have been examined in the treatment of other psychiatric disorders, but little is known about the effects of these agents on AINDs. Our aim was to synthesize the evidence for the effectiveness of CPEAs on AINDs. Databases were searched for controlled trials examining CPEAs on AUD, WKS, and alcohol-related dementia (ARD). Eligible studies were included in a qualitative synthesis and a quality assessment was conducted. The search identified 23 studies (4 ≤ ns ≤ 98). Evidence suggests that modafinil may improve executive functions in AUD and ARD, but this effect may only be present in patients with severe deficits. The studies were rated as having a moderate risk of bias. Despite the promising effects of modafinil, small samples and inconsistent evidence deem the results preliminary. More research is warranted examining the effects of transdiagnostic CPEAs on deficits across AINDs.
We use language to achieve understanding, and language barriers can have major health consequences for patients with serious illness. While ethnic minorities are more likely to experience social ...inequalities in health and health care, communicative processes in language-discordant cancer care remain unexplored. This study aimed to investigate communication between patients with cancer and limited Danish proficiency and oncology clinicians, with special emphasis on how linguistic barriers influenced patient involvement and decision-making. 18 participant observations of clinical encounters were conducted. Field notes and transcriptions of audio recordings were analyzed, and three themes were identified: Miscommunication and uncertainty as a basic linguistic condition; Impact of time on patient involvement; Unequally divided roles and (mis)communication responsibilities. The results showed that professional interpreting could not eradicate miscommunication but was crucial for achieving understanding. Organizational factors related to time and professional interpreting limited patient involvement. Without professional interpreting, patients' relatives were assigned massive communication responsibilities. When no Danish-speaking relatives partook, clinicians' ethical dilemmas further increased as did patient safety risks. Language barriers have consequences for everyone who engages in health communication, and the generated knowledge about how linguistic inequality manifests itself in clinical practice can be used to reduce social inequalities in health and health care.
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