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Living with dementia from the perspective of older people: is it a positive story?
- Author:
- STEEMAN Els
- Journal article citation:
- Aging and Mental Health, 11(2), March 2007, pp.119-130.
- Publisher:
- Taylor and Francis
Dementia, even at an early stage, may pose problems and challenge one's quality of life. Having accurate knowledge of what one experiences when living with dementia is important for developing proactive care for individuals with dementia and their families. The aim of this Grounded Theory study was to explore what it means for elderly people to live with early-stage dementia. This study interviewed 20 elderly people with probable mild dementia and their family members drawn from five memory clinics in Flanders, Belgium. Living with dementia was often presented as a positive narrative, one that told of only minor problems and which stressed abilities and contentment with life. Being valued, rather than losing one's cognition or identity was central in their experience. More in-depth analyses of participants' narratives revealed, however, that they were constantly balancing their feelings of value and worthlessness, struggling to remain someone of value. This struggle was prompted by threats posed by dementia and by the persons' interactions with others. Superficially, a positive narrative may be understood as a lack of awareness or as denial due to cognitive loss. The findings suggest, however, that we should look beyond this superficial view and seek to understand the narrative as an expression of one's attempt to counterbalance devaluation.
Neuropsychiatric symptoms of dementia: cross-sectional analysis from a prospective, longitudinal Belgian study
- Authors:
- ENGELBORGHS Sebastiaan, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 20(11), November 2005, pp.1028-1037.
- Publisher:
- Wiley
Given the rather limited knowledge on profiles of neuropsychiatric symptoms (behavioural and psychological signs and symptoms of dementia, BPSD) in several degenerative dementias, we designed a prospective study of which we here present the baseline data. Diagnosed according to strictly applied clinical diagnostic criteria, 205 patients with probable Alzheimer's disease (AD) , 29 with frontotemporal dementia (FTD) , 39 with mixed dementia (MXD) and dementia 23 with Lewy bodies (DLB) were included. All patients underwent a neuropsychological examination and behavioural assessment by means of a battery of scales (Middelheim Frontality Score (MFS), Behave-AD, Cohen-Mansfield Agitation Inventory, Cornell Scale for Depression in Dementia). In AD and MXD, activity disturbances and aggressiveness occurred in more than 80% of the patients. With a prevalence of 70%, apathy was very common whereas delusions and hallucinations were rare in FTD patients. Frequently used behavioural assessment scales like the Behave-AD systematically underestimated BPSD in FTD whereas the MFS displayed high sensitivity for frontal lobe symptoms. Hallucinations discriminated DLB patients from other dementias. A high prevalence of disinhibition (65%) in DLB pointed to frontal lobe involvement. Behavioural assessment may help differentiating between different forms of dementia, further stressing the need for the development of new and more sensitive behavioural assessment scales. By means of the MFS, frontal lobe involvement was frequently observed in DLB. As 70% of FTD patients displayed apathy, prevalence was about two times higher compared to the other disease groups, meanwhile indicating that apathy is frequently observed in dementia, irrespective of its etiology.
Older people
- Author:
- MANTHORPE Jill
- Journal article citation:
- Research Matters, 2005, pp.37-42.
- Publisher:
- Community Care
This article reports on studies from four continents into age discrimination in the workplace, home care support and mental health issues give valuable pointers for UK practice.
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.
Enabling meaningful activities and quality of life in long-term care facilities: the stepwise development of a participatory client-centred approach in Flanders
- Authors:
- DE VRIENDT Patricia, et al
- Journal article citation:
- British Journal of Occupational Therapy, 82(1), 2019, pp.15-26.
- Publisher:
- Sage
Introduction: Meaningful activities of daily living promote the quality of life of residents of long-term care facilities. This project aimed to develop an approach to enable meaningful activities of daily living and to guide long-term care facilities in a creative and innovative attitude towards residents' meaningful activities of daily living. Method: The approach was developed in six steps: (1) in-depth-interviews with 14 residents; (2) a survey with 171 residents; (3) a systematic map and synthesis review on interventions enriching meaningful activities of daily living; (4) qualitative analysis of 24 ‘good examples’ and, to support future implementation, (5) focus groups with staff (n = 69). Results determined the components of the new approach which was (6) pilot-tested in one long-term care facility. Quantitative and qualitative data were gathered concerning benefits for the residents and feasibility for the staff. Results: A client- and activity-oriented approach was developed, characterised by an active participatory attitude of residents and staff and a systematic iterative process. Significant positive effects were found for the number of activities, the satisfaction with the leisure offered, the social network, medication use, but not for quality of life. The approach appeared to be feasible. Conclusion: This approach stimulates residents' meaningful activities of daily living and social life. Further investigation is needed to evaluate its outcome and implementation potentials.
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)
Rights, risks and restraint-free care of older people: person-centred approaches in health and social care
- Editors:
- HUGHES Rhidian, (ed.)
- Publisher:
- Jessica Kingsley
- Publication year:
- 2010
- Pagination:
- 224p., bibliog.
- Place of publication:
- London
This book provides health and social care professionals with an authoritative reading resource on the ethics and use of restraint. It provides an overview of the different forms of restraint, the conditions under which they are used and their implications for the health and wellbeing of older people. Practical approaches to minimising restraint are then explored, underlining the importance of person-centred care. Innovative programmes and approaches to reducing the use of restraint are described and assessed, and case studies are drawn upon to highlight practice challenges and their effective resolutions. The perspectives of older people and their carers and families, as well as of professionals, commissioners and regulators of health and social care, are also taken into account. The contributors are drawn from an international range of health and social care settings, as well as from the academic world.
The process of definitive institutionalization of community dwelling demented vs non demented elderly: data obtained from a network of sentinel general practitioners
- Authors:
- SCHOENMAKERS Birgitte, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 24(5), May 2009, pp.523-531.
- Publisher:
- Wiley
The aim of the present study was to investigate the differences between characteristics of community dwelling demented and non demented elderly and their caregivers at the moment of definitive institutionalization. The study is a cross-sectional analysis performed on data obtained from a Network of Sentinel General Practitioners. Older demented patients with several concomitant diseases were mainly placed because of unmanageable behavioural disturbances. Strikingly, these dementia patients were more often confronted with a time delay in definitive institutionalization due to their high care dependence. Although burden in the dementia family caregivers was an important motivation for definitive institutionalization, it did not seem to be a motive in the final institutionalization circumstances. Behavioural disturbances are independently of caregiver burden, professional support, or a spousal relationship the main direct reason for institutionalization of community dwelling demented elderly. The way caregivers feel supported might play the key role in the final placement decision
A new approach to the qualitative evaluation of functional disability in dementia
- Authors:
- KURZ X., et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 18(11), November 2003, pp.1050-1055.
- Publisher:
- Wiley
Dementia patients suffer from the progressive deterioration of cognitive and functional abilities. Instrumental disabilities usually appear in the earlier stages of the disease while basic disabilities appear in the more advanced stages. In order to differentiate between mild, moderate and severe patients both instrumental and basic functional disabilities should be taken into account simultaneously. The objective of this study was to find a new method for classifying dementia patients based on their disabilities by using a basic and an instrumental Activities of Daily Living (ADL) scale. Functional disability was assessed in a Belgian cohort of dementia patients using the Katz and Lawton Instrumental Activities of Daily Living (IADL) scales. A k-means derived clustering method allocated patients to disability clusters according to their Katz and Lawton scores. In order to validate the classification, we compared socio-demographic, clinical and costs parameters between the groups. The clustering method allocated patients between three clusters: dependent, non-dependent with instrumental functional disability (ND-IFD) and non-dependent. Dependence, as defined by these clusters, significantly correlates with age, residential setting, MMSE, patient's quality of life and costs. This new classification of patients suffering from dementia will provide better understanding of functional disabilities and will complement the evaluation of disease severity based on cognitive function.
Family care of the older elderly: casebook of initiatives
- Authors:
- STEENVOORDEN M., van der PAS F., de BOER N
- Publisher:
- European Foundation for the Improvement of Living and Working Conditions
- Publication year:
- 1993
- Pagination:
- 88p.
- Place of publication:
- Dublin
Contains 14 examples of projects and initiatives from EC member states designed to support carers of older people. These include: a sitting service; leave of absence and allowances for carers; support groups for carers; advice bureau for carers; help for dementia sufferers and their carers; local day centres; and respite care.