Managing Dementia in a Multicultural Society

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Directly after the interviews, the interviewer made notes on the content of the interviews, the group interaction, and feelings developed during the interview [ 31 ]. All interviews were audio-recorded and transcribed verbatim by a professional secretary and one of the investigators CL , and then analyzed.

Data were analyzed with inductive qualitative content analyses [ 30 ]. The transcripts were read through and checked for accuracy and coherency to promote high quality and to get a sense of the content as a whole [ 30 ]. Then, the texts were broken into smaller meaning units and codes were identified.

Codes with similar meanings were grouped together and subcategories and categories emerged based on patterns. Throughout the analysis process the investigators searched for contradictions, regularities, similarities, and patterns in the text supporting the development of subcategories and categories. Categories were refined and developed until an acceptable system was reached. Collection and analysis of data proceeded concurrently and until no new information was added in the data analysis [ 30 , 31 ].

In order to increase credibility, investigator triangulation was used, by two of the authors independently coding and checking the content of the codes [ 30 ] which showed high agreement. During the whole process of analysis all co-authors also checked and confirmed the content and the relevance of subcategories and categories. Discussions were held until consensus was reached in the event of diverging results. By illustrating categories with illuminative quotations and by naming categories as close to the text as possible, confirmability was ensured.

By describing the investigation process audit trail , as thoroughly as possible, dependability was confirmed, and finally transferability can be strengthened by studying informants with different professions, from different hospitals and different geographical areas, thus giving a precise description of the study population. A common habit in somatic and psychiatric emergency healthcare, as described by the respondents, was to use professional interpreters, while health professionals in ambulance care used family members. A professional interpreter in the room is hard to beat. It is the best … the patient often feels much more secure, the interpreter gets a different kind of contact with the patient and might then get more information just through his presence.

The advantage is that they family members are often on the spot. Sometimes they have contacted relatives by telephone and that works well too, as I described earlier with FaceTime that you just stand there talking and then pass the receiver between you. It is mostly relatives that we use. R 22, Ambulance care. Differences between workplaces were found: bilingual health professionals and family members could be used to a limited extent in ambulance care and emergency care, but in the latter case telephone interpretation by professional translators was also used on unpredictable occasions for short-term assignments, even outside office hours.

In some situations healthcare staff had a negative perception of having professional interpreters present, due to threatening patients in psychiatry, being exposed to unpleasant emergency situations, and limited space in ambulance care. In psychiatry we need to have an interpreter present all the time.

R 24, Psychiatric EC. However, both somatic and psychiatric emergency healthcare found it a problem to have professional interpreters in the room because they were not easily accessible at short notice but required long planning in advance and in some cases led to prolonged healthcare visits for the patient. Often you have to book time, and sometimes there are no times available.

Even if there is some sort of emergency line — if I have understood right — where you can get an interpreter within an hour or half an hour. Most health professionals perceived benefits in using telephone interpretation in short-term, one-off emergency care situations, and in situations experienced as sensitive by patients.

An interpreter by telephone is more easily accessible. Sometimes … the only alternative to get an interpreter in the language we needed … it might be possible to get one faster for the same reason. R 13, Somatic EC. In some cases, using telephone interpreters had been experienced as a hindrance in examinations as they were unable to observe body language and the technical equipment functioned badly, making it difficult to hear. The patient feels security and trust in the family member, who is mostly available in unpredictable situations at short notice.

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At the same time healthcare staff can easily convey information to the relatives. Disadvantages could be poorer-quality interpretation because of risk of breaking the code of confidentiality and lack of language competence. Informal interpreters such as relatives or colleagues were used when necessary if the patient was unconscious, severely ill, unable to speak, or action had to be taken without delay, or in the case of a heavy workload and need of fast access to an interpreter.

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Diffuse conditions, complex care, and critical conditions require interpreters, in contrast to simple health problems. R 5, Somatic EC. In somatic and psychiatric care situations health professionals preferred a professional interpreter in place because they perceived them to ensure interpreting word-by-word, having a professional attitude, and remaining neutral and objective.

A professional interpreter on the spot … is the best. In situations in the ambulance with no other choice of interpreting service, in situations that occur in the home or various social environments, the staff in ambulance services prefer a calm, objective relative who is on the spot. This is because they can give security and can be an asset in a confused situation, also providing continuous information about the person.

R 20, Ambulance care. Knowledge about laws, policies, and guidelines regarding interpreting service varies among health professionals, and the majority are not aware of any specific law or policy regulating the use. Most of the health professionals know about the law on procurement governing routines for booking a professional interpreter.

Somatic EC. In psychiatric care some respondents said that there was a formal policy at the workplace stating that professional interpreters were to be used, and not family members. This in contrast to somatic emergency care with its informal recommendation to use telephone interpreters or family members as quick and accessible alternatives. In ambulance care informal guidelines were also used, with the normal routine of using available family members. A respondent in ambulance care said that there is a written formal policy to use an interpreter but it was not adapted to their working conditions and thus could not be used.

Booking an interpreter becomes an issue for health professionals in emergency care by self-established informal guidelines, a routine which the majority were pleased with. R 26, Psychiatric EC.

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Most of the respondents stated they had learned from older colleagues when and how to use a professional interpreter and a few from training or introduction at the workplace. But … also from other occupational categories. Most health professionals expressed satisfaction with the informal procedures available and had no need for other guidelines. If guidelines were available it was perceived as contributing positively by increased used of interpreters and facilitation of equitable sharing.

On the other hand, guidelines could restrict the use by being too detailed in their recommendations. The majority of respondents knew how to order a professional interpreter, which was done from one or two interpreter agencies that the workplace had agreements with. Physicians, managers, and staff in the ambulance service said they were never involved in booking a professional interpreter and did not know how to do it. No restrictions in terms of costs for the order were perceived to hinder the use of a professional interpreter; instead the needs of the patient determined the use.

R 4, Somatic EC. Some managers in emergency care described being aware of issues concerning interpreter use when staff experienced difficulties, or they handled the billing or issues of patient safety. I come into contact with it in that I pay the bills for interpreters … sometimes when the staff have difficulties … and discuss how we should act and think. R 11, Somatic EC. Booking of a professional interpreter was determined by health professionals themselves, identifying in the encounter with the patient the need for interpretation to be able to understand each other.

A few respondents stated that interpreters are needed in all care settings for correct exchange of information.

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Many said that patients who need a professional interpreter usually have to wait longer, which may cause worry for the patient, or the patient might cancel the visit and refrain from care. On the other hand, a few described how the visit might go faster using a professional interpreter. Conversation through a professional interpreter was perceived as often becoming technical and impractical, and the social chatter intended to relax the person was excluded.

Further, there was less support for the patient with lack of emotional processing, and the patient gets more compressed information and lacks the opportunity to ask follow-up questions and become an active participant in healthcare. The health care staff say that the entire health care situation deteriorates because caring encounters are based on using language.

Many respondents said that the relationship between the caregiver and the patient was negatively influenced when an unknown person in ordinary clothes was present in the room. Then care can be delayed … it takes more resources that we for example keep the patient on a bed for observation R 24, Psychiatric EC. R 29, Psychiatric EC. In care delivered in the ambulance or in the home, there is no time to get a professional interpreter in the right language due to short, fast, and unpredictable situations; instead family members or neighbors were used. Professional interpreters are not used in short encounters in healthcare or in nursing care, e.

Instead body language, family members, or bilingual colleagues are used by the nurses for initial assessment of the patient to sort out the cause of the visit or on admission to the emergency unit. The problem and the reason why they are here. R 25, Psychiatric EC. R 3, Somatic EC. Both Swedish and the other language. So that you get a clear picture and can translate correctly … important that we get what the patient is and not an interpretation of what the patient says.

The majority of health care staff in psychiatric and somatic emergency care have a positive attitude to the use of professional interpreters at the workplace, but some do not have any expectations or do not discuss the use of interpreters, particularly in the ambulance units where professional interpreters are rarely used. The professional interpreter is described by many as a tool overcoming communication deficiencies and as a solution to the language problem.

When the professional interpreter is available on time and stays as long as needed, and when the technical equipment functions well and the interpretation occurs in an undisturbed environment, health professionals felt that these organizational and practical aspects functioned and the interpreting situation was good. In the case of women seeking help for gynecological problems, some found it beneficial to have a female professional interpreter. When technical problems occur, or there is lack of space making it difficult to maintain confidentiality, or when the professional interpreter who has been ordered speaks the wrong language, the interpretation situation does not function.

There are all the peripheral factors. That you have to be sitting in a good place, where there is plenty of space, that you have allocated time for the interpretation, and that you can be undisturbed. R 14, Somatic EC. The healthcare professionals indicate that the use of professional interpreters would be facilitated and improved with fast access to professional interpreters by a hotline phone round the clock, and many wished for better access to the most common languages as well as to all languages.

R , Ambulance care. Some discussed how better technology and technical solutions could improve professional interpreter use and the organization of interpreting would be facilitated if the administrative staff helped to book a professional interpreter. For health professionals in ambulance care, it would help if the SOS alarm staff booked a professional interpreter in advance, so that the interpreter was available from the first contact onwards, and all types of professional interpretation were thought to help to make it better for patients and health professionals in ambulance care.

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Good instrument when interpreting, either good telephones with good sound but also perhaps a video link … as you talk to someone over the telephone you just as easily could be able to look the interpreter the face … a face that also sees the patient. R 30, Psychiatric EC. This study explored language interpretation practices in multilingual emergency healthcare by studying different health professionals describing their actions when organizing language interpreting.

Thus, comparisons with previous studies will only be partial. Bilingual healthcare staff and family members were used, but to a limited extent, in somatic emergency care, in contrast to psychiatric emergency care where the norm was to have professional interpreters present. In ambulance service professional interpreters were seldom used; instead persons available at the moment, such as family members, friends etc. Booking of a professional interpreter was mainly based on informal, collectively constructed guidelines and routines at the workplace and sometimes on formal guidelines and different national laws, but knowledge of existing laws was limited.

The ideal was a professional interpreter with high linguistic competence and a professional attitude, and organizational aspects such as appropriate time and technical and social environment. Finally, wishes for the future included the development of a better procedure for prompt access to professional interpreters at the workplace, regardless of organizational context, and education of interpreters and their users.

It also makes it possible for the individual to participate in society. Further, communication in an institutional context is asymmetrical when patients and healthcare staff do not have the same aim, knowledge, or resources [ 17 ]. Thus, an asymmetrical power relation might need to be accepted temporarily to help the individual retain or regain health. Health professionals in this study described how they selected certain situations for interpreting, in contrast to care for people who speak the official language of the country.

This can be explained as caring routines and might be helpful for a person in a stressful situation [ 21 ] but it can contribute to further development of unequal care [ 35 , 36 ]. The findings emphasize the need for legal and health literacy and social justice to help reduce inequalities in accessing healthcare by empowering migrant patients to understand and critically engage in their healthcare [ 28 ].

Patients in need of an interpreter received less support in dealing with emotions, often had to wait longer, and had more compressed information and lack of opportunities to ask follow-up questions than native-born people, which is similar to findings from a review study concerning emergency healthcare which found that patients in need of an interpreter were less satisfied, received inferior care, had limited diagnosis and treatment, and fewer follow-ups [ 6 ].

An interesting finding in this study is that no one mentioned economic aspects of the booking or use of an interpreter. Thus, care in the studied area is focused on humanism rather than bureaucratic values [ 21 ]. In the present study the use of professional interpreters was related to the organizational context, with more frequent use in somatic and psychiatric emergency care than in the ambulance service, where professional interpreters were not used and instead those available at the time, e. One-on-one, family, and group counselling are the cornerstones of our work. Public Education programs are uniquely developed for a variety of audiences including business, volunteer groups, students, long-term care and retirement home staff, healthcare professionals and the general public to raise awareness about the disease, warning signs and risk factors.

Designed for clients in the early to mid-stages of dementia, Social Recreation programs provide opportunities for social engagement and cognitive stimulation, while offering valuable respite time for caregivers. ASLM through the Alzheimer Foundation London and Middlesex AFLM supports projects locally and nationally that significantly advance scientific and clinical knowledge and improve the quality of life for those with the disease and their caregivers.

Support groups for both caregivers and individuals in the early to mid-stages of dementia provide comfort, learning and help from others going through similar experiences. As wait times for specialists can often be more than a year, Memory Clinics serve to facilitate earlier diagnosis at the family physician level, meaning patients who receive a diagnosis can begin accessing available community support services sooner.

At ASLM, our client base continues to grow rapidly and consistently with each passing year. The solution to this rapid increase in need is not an easy one. We must work on several fronts to mitigate the significant financial, emotional and social impact that dementia will have on our society. ASLM is on the forefront, delivering new, innovative programs that provide education and support for those living with the disease today. We are seeking partnerships that will serve to diagnose the disease earlier and make the public more aware and accepting of issues surrounding dementia.

Add to my Favourite Charities Favourited Charity. View All Charity added. Please try again. You are logged in with your charity admin account. To add a charity to Favourites, please log out and use your donor account. Donate Now. Share this page. About Our Impact. What we're working to address Dementia erases your memory, steals your ability to think and makes it impossible to do simple daily tasks such as eating, walking or just getting dressed. Our Strategies. The 17 questions already mentioned were summed to create a score representing total burden of cognitive complaints and functional problems.

Medical history was recorded and neurologic and physical examinations were performed at the initial visit and each follow-up. A medical burden score was calculated as a sum of multiple nonpsychiatric medical conditions; it included hypertension, diabetes mellitus, heart disease, stroke, arthritis, chronic obstructive pulmonary disease or other pulmonary conditions, thyroid disease, liver disease, renal insufficiency, peptic ulcer disease, peripheral vascular disease, cancer, Parkinson disease, multiple sclerosis, and essential tremor. Current depressive symptoms were assessed using the Center for Epidemiologic Studies Depression Scale.

After each clinical assessment, a group of physicians and neuropsychologists reviewed the functional, medical, neurologic, psychiatric, and neuropsychological data but were blinded to TICS and DQ data and reached a consensus regarding the presence or absence of dementia using criteria from the Diagnostic and Statistical Manual of Mental Disorders Third Edition Revised.

If dementia was diagnosed, the etiology was determined using published research criteria for probable and possible Alzheimer disease, 34 vascular dementia, 35 Lewy body dementia, 36 and other dementias. Mild cognitive impairment was not diagnosed in the consensus conference but was retrospectively applied on the basis of the neuropsychological, functional, and memory complaint measures previously described using standard criteria 37 among participants not diagnosed with dementia at the consensus conference.

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Receiver operating characteristic ROC curves were drawn for each of the telephone measures administered TICS total score and DQ summary score , using 4 planned comparisons of interest: 1 nondemented vs demented, 2 cognitively normal vs cognitively impaired ie, MCI and dementia , 3 normal vs MCI, and 4 MCI vs dementia. Areas under the curve were calculated and compared for all participants and separately for non-Hispanic whites, non-Hispanic blacks, and Hispanics.

Posttest probabilities for each participant were then estimated for 2 scenarios: 1 when both TICS and DQ were available, by adding the total scores from both measures to the model; and 2 when the participant was dead or too ill to come to the telephone and the TICS was not available, by adding to the model the total score from the DQ only. Predicted values from the models were then used to generate ROC curves. Demographic characteristics and scores on key study measures of participants with normal cognition, MCI, and dementia are described in Table 1.

Most Differences between mean SD scores of non-Hispanic whites There were no significant differences in mean SD DQ summary score between men 3. Although the mean DQ summary score SD of whites 3. Figure 1 B depicts the ROC curves when MCI participants were combined with the demented participants to form a cognitively impaired group and then compared with participants with normal cognition.

We sought to determine the diagnostic accuracy of the telephone-based measures when making more subtle distinctions between participants with normal cognition and MCI and between MCI and dementia. Figure 1 C depicts the ROC curves when demented participants were eliminated from the analysis and participants with MCI and normal cognition were compared. The AUC for both measures for this comparison was relatively low 0. We then determined the ability of the instruments to distinguish people with MCI from those with dementia, when participants with normal cognition were omitted from the analysis Figure 1 D.

For this comparison, the AUC was 0. The AUC was 0. Examination of the odds ratios in Tables 2 and 3 reveals that both the TICS and DQ performed best in distinguishing nondemented normal cognition and MCI combined from demented participants, and in distinguishing people with MCI from people with dementia. Figure 2 depicts ROC curves for pretest and posttest probabilities as calculated in the logistic regression models. As shown in Table 4 , adding information gathered from the TICS and DQ to the pretest model significantly improved the diagnostic performance for all key clinical outcomes in the study.

Predicted classification as normal cognition, MCI, and dementia, using the optimal cutoffs for the predicted values from the models separating demented from nondemented participants and normal cognition from cognitive impairment, was compared with the observed diagnoses. The cutoffs correctly identified Models using only the DQ summary score showed improved classification over pretest probabilities when the goal was to distinguish demented from nondemented people, and cognitively impaired from cognitively normal people.

However, addition of the DQ summary score did not improve diagnostic accuracy over pretest probabilities when the goal was to identify MCI among nondemented participants or to identify dementia among cognitively impaired participants Table 4. The sensitivity and specificity of the TICS and DQ was variable and depended on the diagnostic groups serving as the standard for comparison. However, in distinguishing demented people from nondemented normal cognition and MCI combined , and people with dementia from people with MCI, the DQ performed better among non-Hispanic whites than among non-Hispanic blacks and Hispanics.

Used alone, the TICS had high sensitivity for distinguishing demented from nondemented participants normal cognition and MCI combined , and excellent specificity when distinguishing people with dementia from people with MCI. The superior specificity of the DQ to the TICS was expected, given the original purpose of developing the instruments: the DQ was designed to pick up on changes in memory and function that are specific to dementia and are not seen in normal aging or MCI.

Although among Hispanics it was similar to our study, the Mayo study showed better accuracy than our study did for the separation of MCI from normal cognition than among the whites and blacks.

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Both studies had lower diagnostic validity for identification of MCI vs normal cognition than was reported by Cook et al 18 in a study of mostly white, community-dwelling nondemented older adults. Our standard diagnostic algorithms for dementia and MCI require an in-person visit; therefore, diagnoses could not be derived for participants not seen because of death, moving out of the area, or refusal.

Our analyses indicate that the diagnostic utility of telephone instruments will increase or decrease in response to variations in the prevalence of cognitive impairment and dementia in the population, and thus it will vary in cohorts that differ by age, race, ethnic group, educational level, and other demographic variables. It was hoped that the availability of the DQ, which taps into cognitive complaints and functional status, and prior visit memory test performance, when added to the direct cognitive assessment provided by the TICS, would improve the identification of MCI among nondemented participants.

Addition of a delayed word list recall to the TICS may marginally improve identification of MCI, but prior research suggests that even with this added component, the classification rate may remain too low to advocate for the use of the Modified TICS as a stand-alone measure for identification of MCI. Correspondence: Jennifer J.