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Alzheimer's dementia in persons with Down's syndrome: predicting time spent on day-to-day caregiving
- Authors:
- McCARRON Mary, et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 4(4), November 2005, pp.521-538.
- Publisher:
- Sage
The aim of this study was to investigate the amount of time formal caregivers spend addressing activities of day-to-day care activities for persons with Down's syndrome (DS) with and without Alzheimer's dementia (AD). Caregivers completed for 63 persons with DS and AD, and 61 persons with DS without AD, the Caregiving Activity Survey-Intellectual Disability (CAS-ID). Data was also gathered on co-morbid conditions. Regression analysis was used to understand predictors of increased time spent on day-to-day caregiving. Significant differences were found in average time spent in day-to-day caregiving for persons with and without AD. Mid-stage and end-stage AD, and co-morbid conditions were all found to predict increased time spent caregiving. Nature and tasks of day-to-day caregiving appeared to change as AD progressed. The study concluded that staff time to address day-to-day caregiving needs appeared to increase with onset of AD and did so most dramatically for persons with moderate intellectual disability. Equally, while the tasks for staff were different, time demands in caring for persons at both mid-and end-stage AD appeared similar.
Dignity and older people
- Authors:
- ARINO-BLASCO Sergio, TADD Win, BOIX-FERRER Josep Antoni
- Journal article citation:
- Quality in Ageing, 6(1), June 2005, pp.30-36.
- Publisher:
- Pier Professional
- Place of publication:
- Brighton
This article deals with professionals' views concerning the importance of dignity for older people and how this can best be maintained. Overall, participants painted a negative picture of the lives of older people, although clear distinctions were drawn between fit and frail older people. Indignities associated with old age arose from ill health, dependency, vulnerability, frailty and loss of competence. It was considered that technological advances made older people seem left behind. However, many described working with this age group as an enjoyable experience. Professionals identified the following factors as essential to dignified care: promotion of autonomy and independence,; a person-centred and holistic approach; maintenance of identity and encouragement of involvement; participation and empowerment; effective communication and respect. Undignified care was associated with invisibility, de-personalisation, abuse, humiliation and narrow and mechanistic approaches to care.
Dignity and older Europeans: methodology
- Authors:
- CALNAN Michael, TADD Win
- Journal article citation:
- Quality in Ageing, 6(1), June 2005, pp.10-16.
- Publisher:
- Pier Professional
- Place of publication:
- Brighton
Describes the methods used within the Dignity and Older Europeans (DOE) Project and in particular the approach involved in developing the bibliographical database, the philosophical methods used in creating the theoretical model of dignity, together with the empirical methods involved in data collection with older people, health and social care practitioners and the younger and middle-aged adults. The article attempts to provide the reasoning for the chosen methods and highlight some of the difficulties involved in carrying out comparative cross-cultural research.
Dignity: the voice of older people
- Authors:
- BAYER Tony, TADD Win, KRAJCIK Stefan
- Journal article citation:
- Quality in Ageing, 6(1), June 2005, pp.22-29.
- Publisher:
- Pier Professional
- Place of publication:
- Brighton
Reports on the findings of 89 focus group and individual interviews, involving 391 people aged 61plus in six European countries. The study was carried out with the aim of exploring how older people view human dignity in their lives. It was seen as highly relevant and important concept, enhancing self-esteem, self-worth and wellbeing. Three major themes were identified: respect and recognition; participant and involvement; and dignity in care. The empirical data reflected the theoretical model of human dignity in that it considered the dignity of personal identity as of importance and relevance. In conclusion, the authors assert that for the dignity of older people to be enhanced, communication issues, privacy, personal identity and feelings of vulnerability need to be addressed.
Needs assessment in dementia
- Authors:
- MEANEY A. M., CROKE M., KIRBY M.
- Journal article citation:
- International Journal of Geriatric Psychiatry, 20(4), April 2005, pp.322-329.
- Publisher:
- Wiley
Resource allocation and service development traditionally focuses on diagnostic categories and consequent perceived need. Identification of the actual level of need in the elderly with dementia, and the degree to which it is unmet is necessary to plan services both individually and as a group. The aim of this study was to characterise the needs of a sample of community dwelling elderly patients with dementia who were referred to an old age psychiatry service in Ireland between July 2002 and July 2003. Eighty-two consecutively referred community dwelling patients with ICD-10 diagnosis of dementia were assessed on The Care Needs Assessment Pack for Dementia (CareNap-D). Data on needs across seven domains (health and mobility, self-care and toileting, social interaction, thinking and memory, behaviour and mental state, housecare, community living) is presented. Subjects had a mean of 33 (range: 13-56) identified needs. Approximately 1/3 of these were unmet with a mean of 13 (range: 0-37) and a mean of 20 (range: 4-39) were met. High levels of unmet need was identified in the domains of behaviour and mental state (84% of those with agitation) and of social interaction (79% of those with partaking in activities need). The specific item of repetitive questioning occurred in 68 individuals and was unmet in 88% of these cases. Increasing age, lower MMSE score, and living alone were associated with greater total levels of unmet need. This data underlines the degree of unmet need in the community dwelling elderly with dementia and the importance of developing a spectrum of services on the basis of the actual needs identified.
Screening for dementia in an Irish community sample using MMSE: a comparison of norm-adjusted versus fixed cut-points
- Authors:
- CULLEN Breda, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 20(4), April 2005, pp.371-376.
- Publisher:
- Wiley
The MMSE is a widely-used instrument in screening for dementia in the community. The traditional cut-point of <24/30 may be unsuitable for use in some settings, due to biases in age and education. This study aimed to investigate whether cut-points derived from age- and education-specific norms would improve the performance of the MMSE as a screening tool for dementia and cognitive impairment in an Irish community setting, potentially reducing the number of onward referrals. A secondary aim was to obtain score norms in an Irish sample. One thousand one hundred and fifteen people aged over 65 (mean age 74.8±6.8 years; 68% female) were assessed in their own homes, using MMSE (world) and the AGECAT computerised diagnostic system for mental illness in the elderly. The performance of the MMSE in identifying case- and sub-case-level dementia was investigated using cut-points of <24 and <23, as well as adjusted cut-points based on published norms and norms derived from the Irish sample. Published norms did not prove useful in improving screening accuracy. Cut-points based on 10th percentile Irish norms and the <23 cut-point performed comparably well, both yielding 93% specificity, with overall accuracy of 90% and 91% respectively (as sensitivity was higher for the <23 cut-point). Locally-derived norms yielded better screening accuracy than did published norms or the traditional <24 cut-point. The importance of selecting an appropriate percentile cut-off when using norms is discussed. The best results were obtained with a simple <23 cut-point, and this may be optimal when screening for dementia in an Irish community setting.
Understanding obstacles to the recognition of and response to dementia in different European countries: a modified focus group approach using multinational, multi-disciplinary expert groups
- Authors:
- ILIFFE S., et al
- Journal article citation:
- Aging and Mental Health, 9(1), January 2005, pp.1-6.
- Publisher:
- Taylor and Francis
Experts from eight European countries (Belgium, France, The Netherlands, Ireland, Italy, Portugal, Spain and the United Kingdom) and the disciplines of clinical psychology, general practice, geriatric medicine, old age psychiatry, medical sociology, nursing and voluntary body organisation met in 2003 to explore obstacles to recognition of and response to dementia in general practice within Europe. A modified focus group methodology was used in this exploratory process. Groups were conducted over a two-day period, with five sessions lasting 1-1.5 hours each. An adapted nominal group method was used to record themes arising from the group discussion, and these themes were used in a grounded theory approach to generate explanations for delayed recognition of and response to dementia. The overarching theme that arose from the focus groups was movement, which had three different expressions. These were: population movement and its consequences for localities, services and professional experience; the journey of the person with dementia along the disease process; and the referral pathway to access services and support. Change is the core issue in dementia care, with multiple pathways of change that need to be understood at clinical and organisational levels. Practitioners and people with dementia are engaged in managing emotional, social and physical risks, making explicit risk management a potentially important component of dementia care. The boundary between generalist and specialist services is a particular problem, with great potential for dysfunctionality. Stigma and ageism are variably distributed phenomena both within and between countries.
Dignity and older people: the voice of society
- Authors:
- STRATTON David, TADD Win
- Journal article citation:
- Quality in Ageing, 6(1), June 2005, pp.37-45.
- Publisher:
- Pier Professional
- Place of publication:
- Brighton
This article describes the findings of a focus group study designed to discover young and middle aged attitudes towards the subject of age and dignity. 89 focus groups were carried out with 505 participants aged between 13 and 59 years from the UK, Ireland, Spain, France, Slovakia and Sweden. The results confirmed that dignity was important to people of all ages but particularly to older people. Being treated as an individual was critical for the maintenance of dignity. In the participating countries older people were generally treated negatively and undervalued and seen as vulnerable, second-class citizens. Old age was seen as a time for physical and mental deterioration, poverty and dependency. Suggestions for enhancing dignity included greater public awareness about dignity for older people and existing care and support services. Health policies should also tackle ageism in service provision and the developments of standards in health and social care.