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Perceptions of cause and control in people with Alzheimer’s Disease
- Authors:
- MATCHWICK Claire, et al
- Journal article citation:
- Gerontologist, 54(2), 2014, pp.268-276.
- Publisher:
- Oxford University Press
Purpose of the Study: To explore cause and control illness representations in older adults with Alzheimer’s disease (AD). Design and Methods: Six older adults living in the North West of England completed semi-structured interviews that were subject to an interpretative phenomenological analysis. Results: Three main themes emerged indicating that participants were trying to make sense of their AD by comparing it with their previous experience of physical health illnesses. All participants acknowledged their diagnosis of AD but engaged with it in a graded way because of a lack of tangible diagnostic evidence. Participants developed pragmatic emotional responses to their situation. Implications: One of the main implications of the results is that caution needs to be exercised within clinical practice so that the pragmatic responses of individuals with AD are not pathologised. (Edited publisher abstract)
Beliefs about Alzheimer's disease in Britain
- Authors:
- HUDSON John M., et al
- Journal article citation:
- Aging and Mental Health, 16(7), September 2012, pp.828-835.
- Publisher:
- Taylor and Francis
Despite the prevalence and consequences of Alzheimer's disease (AD), surveys have revealed that the general public in North America and Australia hold numerous misconceptions of the disease. This study investigated whether misconceptions of AD are also endorsed by adults in Britain. The Alzheimer's disease knowledge scale (ADKS) was completed by 312 adults residing in Lincolnshire, UK. The ADKS contains 30 true or false statements pertaining to risk factors, assessment and diagnosis, symptoms, course, life impact, caregiving, and treatment and management of AD. Findings revealed that, regardless of age, education, and familiarity with AD, respondents demonstrated a good understanding of some items from all categories. However, knowledge gaps exist about the course of the disease, and of conditions that can exacerbate or simulate the symptoms of AD. The authors concluded that educational campaigns that specifically target these issues may help reduce the impact of AD.
The relationship between self-efficacy and positive aspects of caregiving in Alzheimer's disease caregivers
- Authors:
- SEMIATIN Alicia M., O'CONNOR Maureen K.
- Journal article citation:
- Aging and Mental Health, 16(6), August 2012, pp.683-688.
- Publisher:
- Taylor and Francis
Positive aspects of caring may help buffer carers from the negative psychological and physical consequences of caregiving. Self-efficacy is a potentially modifiable psychological construct that has been associated with positive thinking, improved control of negative affect, and enhanced motivation. This study investigated the relationship between positive aspects of caregiving and self-efficacy among 57 family members caring for a family member with Alzheimer's disease in Boston, Massachusetts, United States. Participant data was gathered through individual interviews conducted as a part of a larger randomised controlled trial of a caregiver intervention. Result revealed that self-efficacy accounted for a significant percentage of the variance in positive aspects of caregiving after controlling for other factors commonly associated with positive aspects of caregiving including caregiver demographics, care recipient neuropsychiatric symptoms, and caregiver depression.
Satisfaction and difficulties of French professional home caregivers in supporting older people with Alzheimer's disease or alcohol misuse
- Authors:
- MOSCATO Alba, VARESCON Isabelle
- Journal article citation:
- Health and Social Care in the Community, 26(1), 2018, pp.27-34.
- Publisher:
- Wiley
In France, few studies have examined home care when it comes to ageing support and even fewer have considered alcohol misuse in this context. The studies also show that being old and having alcohol use disorders are two unfavourable conditions for receiving help, whereas for the Alzheimer's disease, there is a clear need for optimal care. In this article, the authors study professional home caregiver's perceptions of their job along with their difficulties and satisfactions in supporting older people with Alzheimer's disease or alcohol misuse. Out of the 23 professionals approached, 17 took part in a research interview from October 2013 to January 2014. All interviews were recorded, fully transcribed and lexically analysed with Alceste® software. Among the five classes that were identified from 63% of the initial data, the main themes that emerged illustrate the nature of the associated pathologies, the perceptions and satisfactions related to the profession, their adaptive skills, the difficulties related to the life context of the older person, and the wine consumption of the latter. The lexical discourse analysis shows that the professional home caregivers are involved in looking after not only people with Alzheimer's disease but also those with alcohol misuse. However, despite the difficulties and satisfactions encountered, adaptation to the older people seems to be their priority and one of the many skills that they have acquired during their professionalisation. Most of the older people who are helped are women and the difficulties mentioned by their caregivers usually arise at the time of their death. Lastly, when caring for alcohol misusers, they describe negative attitudes in their support. Although research in this area is rare while home care for the older person, whatever the pathology, is increasing, professionals need to be supported by the associations or companies that employ them and should be trained to help them provide the appropriate care. (Edited publisher abstract)
Knowledge and perceptions of dementia and Alzheimer's disease in four ethnic groups in Copenhagen, Denmark
- Authors:
- NIELSEN T. Rune, WALDEMAR Gunhild
- Journal article citation:
- International Journal of Geriatric Psychiatry, 31(3), 2016, p.222–230.
- Publisher:
- Wiley
Objective: 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. Methods: Quantitative survey data from 260 participants were analysed: 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. Results: 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. Conclusions: 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 ageing, particularly among Turkish and Pakistani communities, should be a high priority for educational outreach. (Edited publisher abstract)
Re-examining ethnic differences in concerns, knowledge, and beliefs about Alzheimer's disease: results from a national sample
- Author:
- AYALON Liat
- Journal article citation:
- International Journal of Geriatric Psychiatry, 28(12), 2013, pp.1288-1295.
- Publisher:
- Wiley
The 2010 US Health and Retirement Study was used to evaluate the differences in concerns, knowledge, and beliefs about Alzheimer's disease (AD) in three ethnic groups of older adults (White, Latino, and Black). Data from 939 White, 120 Latino, and 171 Black respondents who completed a special module about AD concerns, knowledge, and beliefs were analysed for the study. Significant ethnic differences were found on 7 of 13 items. However, after the adjustment for education, gender, age, having a family member with AD, depressive symptoms, and medical comorbidity, only four items showed significant ethnic group differences; relative to White respondents, Black respondents were less likely to report that having a parent or a sibling with AD increases the chance of developing AD and that genetics was an important risk for AD. In addition, relative to White respondents, both Black and Latino respondents were more likely to perceive stress as a potential risk for AD. Latino respondents were less likely to perceive mental activity as a protective factor. The study found limited ethnic group differences, with most items showing a similar pattern across groups. Nevertheless, the nature of the ethnic group differences found might be associated with a differential pattern of health service use. (Edited publisher abstract)
African-American urban clergy's literacy of Alzheimer's disease
- Authors:
- STANSBURY Kim L., HARLEY Debra A., BROWN-HUGHES Travonia
- Journal article citation:
- Social Work in Mental Health, 8(3), May 2010, pp.254-266.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This study aimed to determine urban African-American clergy's awareness of Alzheimer's disease, and their willingness to provide support to elders and their family/caregivers. Interviews were conducted with 9 African-American clergy who presided over churches in central Kentucky. Findings showed that all clergy had previous experience providing pastoral care to adults with Alzheimer's disease and were literate regarding its treatment. The clergy were all able to identify risk factors associated with Alzheimer's disease, such as age, diet, genetics, lifestyle choices, diabetes and hypertension. The clergy also acknowledged that Alzheimer's was an incurable degenerative disease. Endorsement of professional help was unanimous, because they felt they could offer no more than emotional support. A majority of participants were knowledgeable about various health and mental health agencies, but were unfamiliar with the process of navigating them. In conclusion, the authors suggest that collaboration between government, educational, and faith based programmes could foster interventions that are effective in meeting the needs of diverse populations of Alzheimer's sufferers.
Factors affecting social work students' willingness to work with elders with Alzheimer's disease
- Author:
- KANE Michael N.
- Journal article citation:
- Journal of Social Work Education, 35(1), Winter 1999, pp.71-85.
- Publisher:
- Council on Social Work Education
This study sought to determine factors that affect social work students' willingness to work with the growing number of elders with Alzheimer's disease in the USA. Results indicate that the principal contributing variables are willingness to work with elders, previous close contact with elders, close contact with elders with Alzheimer's disease, and preference for working with older versus younger clients. These and some less influential factors suggest ways that social work educators can encourage students to serve this vulnerable population.
Cognitive functioning and quality of life: Diverging views of older adults with Alzheimer and professional care staff
- Authors:
- DEWITTE Laura, VANDENBULCKE Mathieu, DEZUTTER Jessie
- Journal article citation:
- International Journal of Geriatric Psychiatry, 33(8), 2018, pp.1074-1081.
- Publisher:
- Wiley
Objective: Staff ratings of quality of life (QOL) in dementia are often lower and more strongly related to the cognitive functioning of the person with dementia than self‐ratings. However, cognition‐related items in QOL measures and limited cognitive screening measures hamper a clear understanding of the relationship, two issues addressed in the current study. Methods: The authors collected data of 88 pairs of older adults with Alzheimer disease and their professional caregivers in 9 residential care settings. Both self‐report and staff report of the QOL of residents were assessed with the Quality of Life in Alzheimer's Disease. Cognitive functioning was assessed with the Mini‐Mental State Examination and a battery of specific cognitive measures. Results: Intraclass correlations and a paired sample t test confirmed a discrepancy between self‐rating and staff rating, with staff significantly underestimating QOL as experienced by the resident. After removing the possibly confounding memory item of the Quality of Life in Alzheimer's Disease, Mini‐Mental State Examination score remained a significant predictor of staff ratings but not self‐ratings in regression analyses. Exploratory analyses of specific cognitive measures showed a significant contribution of a memory test of intentional visual association learning in the prediction of staff‐rated QOL. Conclusions: Staff reports cannot simply substitute reports of the subjective experience of residents with Alzheimer, so both judgments should be taken into account to form an adequate picture of QOL. Staff might be guided more strongly by a cognitive point of view when evaluating QOL of residents with Alzheimer disease, while the latter might have shifted their evaluation standards to cope adequately with the challenges posed by their disease. (Edited publisher abstract)
Illness representations in caregivers of people with dementia
- Authors:
- QUINN Catherine, JONES Ian Rees, CLARE Linda
- Journal article citation:
- Aging and Mental Health, 21(5), 2017, pp.553-561.
- Publisher:
- Taylor and Francis
Objectives: Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of illness representations (label, cause, control and timeline) in caregivers of people with dementia. Method: This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. Results: The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. Conclusion: The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial. (Publisher abstract)