Perceptions Of Dementia Research Articles

Increased Reporting Accuracy of Alzheimer Disease Symptoms in Caribbean Hispanic Informants.

Informant report of symptoms is essential for diagnosing and characterizing Alzheimer disease (AD). Differences in the perception and experience of dementia across ethnicities may influence informant report. Understanding such differences is critical given that among those with AD, Hispanics are disproportionately affected. Cross-sectional analyses examined informant report of cognitive and functional symptoms in mild AD across white (n=107) and Caribbean Hispanic (n=71) informants. To explore its accuracy, informant report of symptoms was compared against objective measures of patient performance. Adjusted analyses revealed Hispanics reported more symptoms than white informants. Informant report of symptoms was inversely correlated with patients' global cognition in both ethnic groups. Only Hispanic report of symptoms was significantly associated with memory and language performance. Informant report of symptoms was associated with patients' global cognition, reflecting relatively accurate informant reports in both ethnic groups, and was stronger in Hispanics when examining memory and language. Such differences may reflect cultural caregiving practices and perceptions of dementia, having implications for diagnosis and treatment.

The study of exercise and health services platform for prevention of dementia

Periodical exercise is important and essential for preventing dementia, for increasing treatment effect and for increasing quality of life. Exercise and health service platform for dementia prevention is the open platform that enables individuals to effectively manage and integrate individuals dementia-related health information that are scattered around at the hospitals, life log service companies, health check-up centers, public clinics, fitness centers and others based on the ICT to enable use of the information for the customized dementia prevention services. It is comprised of three delivery channels that are mutually connected; dementia perception improvement and education service, dementia risk factor management service, and dementia diagnosis structure service. Platform for the elderly dementia prevention and health service gathers together the information on dementia-related risk factors and on the exercise that was scattered around to enable supply of diverse services for dementia prevention.

'I wish they would remember that I forget:' The effects of memory loss on the lives of individuals with mild-to-moderate dementia.

Due to changing cognitive and functional capabilities, individuals with dementia face challenging care-related issues such as feelings of embarrassment, relationship strain, and symptoms of depression and anxiety. Limited research exists examining individuals with dementia's perceptions and concerns about these issues and how their perspectives can impact the quality and process of their illness experience. As part of a larger study, individuals with dementia (n = 114) answered five open-ended questions about their illness experience including: (1) daily routine, (2) concerns about memory loss, (3) relationships with others, (4) fears, and (5) what they wish others understood/knew. For each question, individuals with dementia's responses were analyzed for common themes within and across questions. Individuals with dementia commented on a wide range of issues involving their memory loss, including negative emotional impacts, future concerns and illness progression, forgetting, loss of independence, and the negative and positive influences on interpersonal relationships. Across questions, many individuals also stated that their memory loss did not significantly impact their lives. Discussion highlights how these findings can be used to expand our understanding of individuals with dementia's illness experience and to develop efficacious interventions for addressing negative aspects of living with memory loss while supporting positive aspects.

Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise.

Despite the rapidly ageing population and a predicted sevenfold increase in the prevalence of dementia in minority ethnic communities, people from these communities remain under-represented in specialist dementia services. Leventhal's Model of Self-Regulation suggests perceptions of illness facilitate help-seeking behaviours such as the use of services. This scoping exercise makes use of the model to explore perceptions of dementia in British Indian, African and Caribbean, and East and Central European communities in the United Kingdom. Between August 2013 and April 2014, culturally specific dementia awareness roadshows were attended by people living with dementia, carers and members of the public. During the roadshows, 62 British Indian, 50 African and Caribbean, and 63 East and Central European attenders participated in discussion groups and a dementia knowledge quiz. Thematic and framework analysis were conducted on the discussion group data. Three main themes are presented: Perceptions of dementia, awareness of dementia in the wider family and community, and awareness and use of services. The findings suggest that although groups attributed a biological basis for memory loss, a number of misconceptions prevailed regarding the cause of dementia. Groups also made use of religion, as opposed to medical healthcare services, as a form of personal and treatment control. Seeking help from healthcare services was hindered by lack of awareness of services, and culturally specific barriers such as language. The findings have a number of implications for policy and practice including the development of public health interventions and the need to focus further on reducing barriers to accessing services.

General practitioners' perceptions of the stigma of dementia and the role of reciprocity.

A qualitative exploration of the stigma of dementia reported that general practitioners described lack of reciprocity as one way in which people with dementia are perceived within society. This was closely linked to their perception of dementia as a stigma. In this article, we explore whether general practitioners perceive people with dementia as lacking reciprocity and, if so, if this is linked with societal opinions about dementia as a stigma. The implications of both perceptions of people with dementia failing to reciprocate and of stigma for timely diagnosis are explored. Our approach is to follow the thread of reciprocity in the data from our initial study. In this follow-up study, general practitioners' perceptions of societal views of people with dementia included a perception of a lack of reciprocity specifically linked with; failing to respond to human contact, the absence of an appropriate return on social investment and failing to contribute to, or being a burden on, society. General practitioners reported a link between societal perceptions of lack of reciprocity and stereotypes about advanced dementia, difficulties communicating with people with dementia, and lack of opportunities for people with dementia to reciprocate. General practitioners occupy a key position, they can challenge stereotypes and, with support and targeted training about communicating with people living with dementia, can emphasize the ways in which people with dementia can communicate, thereby enhancing their potential to reciprocate. Such changes have implications for improved care and quality of life through the continued maintenance of social inclusion and perceptions of personhood.

Medical Students' Perceptions of Dementia after Participation in Poetry Workshop with People with Dementia.

Purpose. Researchers assessed whether medical students' participation in a poetry workshop with people with Alzheimer's disease and related dementias (ADRD) affected their attitudes towards persons with ADRD. Objective. To add to the growing body of research summarizing the impact of nonclinical interventions on medical students' perspectives about people with ADRD. Design. Researchers used dementia attitudes scale (DAS) and interpretive phenomenological analysis (IPA) to analyze participants' attitudes. Setting. Osteopathic medical school and dementia care unit in the state of New Jersey. Participants. Eleven out of fourteen medical students completed the study. Measurements. Emerging themes were classified from the postintervention semistructured interviews and descriptive statistics were used to compare the preintervention to postintervention DAS. Results. Researchers found statistically significant differences between preintervention and postintervention DAS scores. Study participants scored a preintervention DAS mean, 107.09 (SD = 11.85), that changed positively and significantly to the postintervention DAS mean, 121.82 (SD = 10.38). DAS subdomains, “comfort” (P = 0.002) and “knowledge” (P = 0.01), and eleven of the twenty DAS items underwent a positive and statistically significant shift from preintervention to postintervention. IPA of the interviews yielded five primary and five secondary themes, supporting the measured statistical outcomes. Conclusion. Medical students' participation in a poetry workshop, with people with ADRD, positively impacts their attitudes.

Knowledge and perceptions of dementia and Alzheimer's disease in four ethnic groups in Copenhagen, Denmark.

Older people from ethnic minorities are underrepresented in dementia care. Some of the determinants of access to care are knowledge and perceptions of dementia, which may vary between ethnic groups in the population. The aims of this study were to compare knowledge and perceptions of dementia and Alzheimer's disease (AD) among four ethnic groups in Copenhagen, Denmark, and to assess the influence of education and acculturation. Quantitative survey data from 260 participants were analyzed: 100 native Danish, and 47 Polish, 51 Turkish, and 62 Pakistani immigrants. Knowledge and perceptions of dementia and AD were assessed with the Dementia Knowledge Questionnaire (DKQ) supplemented with two questions from the Alzheimer's Disease Awareness Test (ADAT). Knowledge and perceptions of dementia and AD in the four groups were compared, and the influence of education and acculturation was assessed. Group differences were found on the DKQ total score as well as all sub-domains. Turkish and Pakistani people were most likely to hold normalizing and stigmatizing views of AD. Level of education and acculturation had limited influence on dementia knowledge, accounting for 22% of the variance at most and had only minor influence on perceptions of AD. Lacking knowledge and certain perceptions of dementia and AD may hamper access to services in some ethnic minority groups. Ongoing efforts to raise awareness that dementia and AD are not part of normal aging, particularly among Turkish and Pakistani communities, should be a high priority for educational outreach.

Folk and biological perceptions of dementia among Asian ethnic minorities in Hawaii.

To study if Asian ethnic groups in Hawaii today maintain folk-based beliefs about dementia, have inadequate biomedical understanding of dementia, and differ among each other regarding perceptions of dementia. The study adapts and expands a 2004 survey of ethnic groups on perceptions of Alzheimer disease demonstrating that ethnic minority groups hold more folk perceptions and less biomedical perceptions of dementia than Caucasians. This study surveys particular ethnic minority family members of elders admitted to four long-term care and inpatient facilities in Hawaii. Seventy-one family members completed surveys, including 23 Chinese, 18 Filipino, and 30 Japanese participants. Elders may or may not have had the diagnosis of dementia, though an estimated half of elders in all four facilities already held the diagnosis of dementia. Findings indicated that Japanese and Chinese respondents in this study held perceptions about dementia that were more consistent with current biomedical understanding compared with their Filipino counterparts (mean differences/percent correct for Japanese: 57%, Chinese: 56% versus Filipino: 38%; F = 6.39, df = 2,55, p = 0.003). Filipino respondents were less likely than Japanese and Chinese respondents to report that persons with dementia can develop physical and mental problems-97% of Japanese participants and 82% of Chinese participants responded correctly compared with 63% of Filipino participants (Fisher's Exact test p = 0.009). With regard to folk beliefs about dementia, variation occurred with no consistent trend among the groups. Low levels of biomedical understanding of dementia were reflected by all three subgroups of Asians living in Hawaii with less prominence of folk beliefs compared with prior studies of ethnic minority perceptions. Education did not predict variability in dementia perceptions among the groups. Lower levels of acculturation, suggested by primary home language other than English, may correlate with a perception of dementia that is less consistent with current biomedical understanding of dementia. Persisting folk beliefs about dementia and the evident lack of biomedical understanding, particularly the belief that dementia is a normal part of aging, emphasizes the need for more culturally tailored strategies in patient education about dementia and the importance of early intervention.

Understanding and awareness of dementia in the Sikh community

Previous literature confirms that older black minority ethnic populations are less likely than white populations to contact dementia services in the UK. However, it is unknown whether this is due to a higher or lower prevalence of dementia or due to different needs or coping strategies within these communities. The aim of this study was to explore the understanding and perceptions of dementia amongst Sikhs living in the UK. Six focus groups were involved with 28 Sikh participants who were recruited from Gurdware (Sikh places of worship). Data were analysed using constant comparative methodology. The themes reported in this paper include “awareness and interpretation of the characteristics of dementia”, “multiple perspectives of the same symptoms” and “causes of dementia”. The findings have been discussed in the context of existing research and provide an introductory insight into informing culturally appropriate interventions.

The perception of dementia in the general population in Japan

The perception of dementia in the general population in Japan

Caregivers’ understanding of dementia predicts patients’ comfort at death: a prospective observational study

BackgroundPatients with dementia frequently do not receive adequate palliative care which may relate to poor understanding of the natural course of dementia. We hypothesized that understanding that dementia is a progressive and terminal disease is fundamental to a focus on comfort in dementia, and examined how family and professional caregivers’ understanding of the nature of the disease was associated with patients’ comfort during the dying process.MethodsWe enrolled 372 nursing home patients from 28 facilities in The Netherlands in a prospective observational study (2007 to 2010). We studied both the families and the physicians (73) of 161 patients. Understanding referred to families’ comprehension of complications, prognosis, having been counseled on these, and perception of dementia as “a disease you can die from” (5-point agreement scale) at baseline. Physicians reported on this perception, prognosis and having counseled on this. Staff-assessed comfort with the End-of-Life in Dementia - Comfort Assessment in Dying (EOLD-CAD) scale. Associations between understanding and comfort were assessed with generalized estimating equations, structural equation modeling, and mediator analyses.ResultsA family’s perception of dementia as “a disease you can die from” predicted higher patient comfort during the dying process (adjusted coefficient −0.8, 95% confidence interval (CI): −1.5; -0.06 point increment disagreement). Family and physician combined perceptions (−0.9, CI: −1.5; -0.2; 9-point scale) were also predictive, including in less advanced dementia. Forty-three percent of the families perceived dementia as a disease you can die from (agreed completely, partly); 94% of physicians did. The association between combined perception and higher comfort was mediated by the families’ reporting of a good relationship with the patient and physicians’ perception that good care was provided in the last week.ConclusionsAwareness of the terminal nature of dementia may improve patient comfort at the end of life. Educating families on the nature of dementia may be an important part of advance care planning.

Constructions of dementia in the South Asian community: a systematic literature review

South Asians are at a greater risk of developing dementia due to having a higher incidence of diabetes than the UK population as a whole. Despite this they seem under-represented in service use for dementia. This review aimed to provide an overview of research on the perceptions of dementia in the South Asian community and the role of culture, religion and spirituality in these conceptualisations. Following a systematic literature search, five articles were reviewed and analysed thematically. Six themes were identified; South Asians' knowledge of general mental illness and aging; the nature of dementia and its symptoms, beliefs about the causes of dementia; community perceptions regarding dementia; treatment for dementia as well as how service provision could be improved. In this under-researched area, the available evidence highlights that South Asians understanding of dementia is likely to be implicated in the low uptake of services. Future research is identified.

The Lay Public’s Understanding and Perception of Dementia in a Developed Asian Nation

Background: Early detection of dementia aims to improve treatment outcomes. However, poor perception and understanding of dementia are significant barriers. We aim to investigate the public’s perception of dementia and identify variables associated with the different profiles of public perception. Methods: A custom-designed questionnaire was used to assess laypersons’ knowledge and perception of dementia during a health fair at a public hospital in Singapore, a developed Asian nation. Out of a sample of 370 subjects, 32 declined to participate (response rate = 91.4%). Latent class analysis (LCA) was used to identify meaningful subgroups of subjects from significant associations with multiple indicators of dementia awareness. Multinomial logistic regression was performed exploring variables associated with each of the subgroups derived from LCA. Results: The majority of the study participants were female (66.9%), 65 years or older (71.1%), and ethnic Chinese (88.1%). LCA classified the study participants into 3 subgroups: Class 1 (good knowledge, good attitude), Class 2 (good knowledge, poor attitude), and Class 3 (poor knowledge, poor attitude), in proportions of 14.28, 63.83, and 21.88%, respectively. Compared to other classes, participants with good knowledge and good attitude towards dementia (Class 1) were more likely to know someone with dementia and understand the effects of the disease, be married, live in private housing, receive higher monthly income, and not profess belief in Buddhism, Taoism, or Hinduism. Conclusion: Our results show that the public in Singapore may not be ready for screening initiatives and early dementia diagnosis. Education efforts should be targeted at lower socioeconomic groups, singles, and those of certain oriental religions.

Communicating With Patients Who Have Advanced Dementia: Training Nurse Aide Students

The increase of dementia in older adults is changing how medical care is delivered. Recognizing symptoms of pain, managing behaviors, and providing quality of life for people who have advanced dementia requires a new skill set for caregivers. Researchers in this study targeted nurse aide students to test an educational module's effect on students' perceptions of dementia and their ability to care for patients with dementia. The results indicated the training was effective regarding nurse aides' understanding of residual cognitive abilities and need for meaningful contact among patients with advanced dementia; however, the training was not successful in terms of nurse aides' comfort level or perceived skills in working with this population of patients. The findings suggest a need to transform how caregivers are trained in communication techniques. Incorporating this training into nurse aide education has the potential to increase quality of life for people with dementia.

Perceptions of dementia and its prevention among six elderly women at adult day care centers in Japan:

Perceptions of dementia and its prevention among six elderly women at adult day care centers in Japan:

Changes in the perception of dementia in Japan

In parallel with the aging of Japanese society, the number of older Japanese with dementia has been steadily increasing. In response to this trend, the Japanese government has established long-term care insurance and an adult guardianship system. At the same time, national and local governments, medical associations, the Alzheimer's Association and pharmaceutical companies have tried to promulgate knowledge regarding dementia. It is therefore important to assess whether these social movements are having an impact on the perception of dementia among the general population in Japan.

Perceptions of Dementia among Asian Indian Americans

We surveyed a convenience sample of 255 Asian Indian Americans (AIAs) aged 18-81 years assessing perceptions of dementia etiology, help-seeking, and treatment, and knowledge of symptoms of Alzheimer’s disease (AD). In response to a vignette describing the early stages of AD, participants indicated a substantial willingness to seek help. Most participants knew that memory loss was the key symptom of dementia, yet most knowledge items were correctly answered by fewer than half of the sample. Participants who had more knowledge of AD were more likely than those with less knowledge of AD to state that they would seek help for an elderly relative showing symptoms of dementia. Relative to other psychosocial factors, loneliness was highly rated as an etiological factor and keeping mentally active was highly rated as a treatment. This study is the first to document dementia beliefs among AIAs, illustrating the need for culturally-tailored dementia education and care for the AIA population.

Asian cultural influences on dementia in a developed country: a Singapore perspective

Background and aims:One of the major challenges in Asia is the impact of diseases in the aging population. Dementia is a common and disabling disorder in the elderly which has gained growing public health relevance. The Asian populations in developing countries have been known to report a lower prevalence of dementia, partially influenced by their cultural background and traditional societal roles for the elderly. We aim to investigate how living in a developed country with a strong Asian cultural background, influence perceptions on dementia.Methods:We invited in-patients of a tertiary hospital, with no previously diagnosed cognitive impairment, to complete an anonymous, self-filled questionnaire about their perceptions of dementia, societal trends and the current role of elderly in Singapore.Results:Majority of respondents had strong traditional values and felt a duty of care for elderly within their family. Societal norms still suggests that our elderly would more likely give up position of authority and property for younger members of the family. Our elderly also became significantly less active in society after retirement.Conclusion:With the rapid development of our society and trend towards nuclear families, the resultant possibility of higher carer stress and pressure for residential placement facilities are likely to grow.

Hwabyung as Caregiving Stress Among Korean-American Caregivers of a Relative with Dementia

Qualitative research using narrative analysis was undertaken to illuminate how Korean-American caregivers with a relative with dementia give meaning to their caregiving experiences. Hwabyung as caregiving stress was described in the context of Korean culture. Two Korean born caregivers living in the United States, one indicating she had hwabyung and the other that she did not, participated in telephone interviews. Four themes emerged: (1) perception of dementia, (2) caregiving situation, (3) the expression of stress and (4) coping skills. The outcomes suggested that caregiving stress, and service needs for Korean Americans are similar to other groups, but the expression of stress is different. Alternative interventions for caregivers are then suggested.

Incidence and mortality of Alzheimer's disease or dementia using an illness-death model.

We present an illness-death model for studying the incidence and the prevalence of Alzheimer's disease or dementia. We argue that the illness-death model is better than a survival model for this purpose. In this model the best choice for the basic time-scale is age. Then we present extensions of this model for incorporating covariates and taking account of a possible effect of calendar time. Calendar time is introduced via a proportional intensity model. We give the likelihood for a mixed discrete-continuous observation pattern from this model: clinical status is observed at discrete visit-times while the date of death is observed exactly or right-censored. The penalized likelihood approach allows to non-parametrically estimate the transition intensities. Application on the data of the Paquid study allows to produce estimates of the age-specific incidence of dementia together with mortality rates of both demented and non-demented subjects. Then the effect of calendar time and educational level are studied. Low educational level increases the risk of dementia. The risk of dementia increases with calendar time while the mortality of demented subjects decreases. The most likely explanation of this result seems to be in a shift in the diagnosis of dementia towards earlier stages of the disease prompted by a change in the perception of dementia and the arrival of new drugs.