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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.
The relationship between frailty, functional dependence, and healthcare needs among community‐dwelling people with moderate to severe dementia
- Authors:
- ABREU Wilson, et al
- Journal article citation:
- Health and Social Care in the Community, 27(3), 2019, pp.642-653.
- Publisher:
- Wiley
This paper examines the healthcare needs of community‐dwelling older people living in Porto, Portugal, diagnosed with moderate or severe dementia, linked to functional dependency, cognitive decline, limitations in the activities of daily life, and frailty levels. A sample of 83 participants was recruited. Data were collected between 2013 and 2017. A sociodemographic questionnaire, the Clinical Dementia Rating (CDR), the Barthel Index (BI), the Lawton and Brody Instrumental Activities of Daily Living (IADL) Scale, and the Edmonton Frail Scale (EFS) were used. A set of 26 healthcare needs was defined to support the assessment. The Pearson chi‐square or Fisher's exact test (as appropriate) was used to examine the association of the needs (unmet and met) with the levels of dementia and frailty. Participants were diagnosed previously with moderate or severe dementia and benefited from a structured home‐care program. There was a high number rated as “severe dementia,” “fully dependent,” “severely or fully dependent in the activities of daily living (ADL),” and “severe frailty.” There were statistically significant differences among needs identified in people with moderate or severe dementia and moderate or severe frailty. The most prevalent healthcare needs in the sample were food preparation, medication/taking pills, looking after their home, toilet use, sensory problems, communication/interaction, bladder, bowels, eating and drinking, memory, sleeping, and falls prevention. In particular, the study identifies a set of needs that are present simultaneously in both frailty and dementia stages. This study underlines that despite well‐structured home‐care programs for people with dementia, unmet health needs remain. Timely healthcare needs assessment may help professionals to avoid fragmented care and to tailor quality‐integrated interventions, including the emotional and psychological balance of the caregiver. (Edited publisher abstract)
Prevalence of older adults' abuse and neglect in Portugal: an overview
- Authors:
- SANTOS Ana Joao, FERREIRA-ALVES Jose, PENHALE Bridget
- Journal article citation:
- Quality in Ageing and Older Adults, 12(3), October 2011, pp.162-173.
- Publisher:
- Emerald
This literature review identifies, describes and compares studies of the prevalence of abuse and neglect of older adults in Portugal. A retrospective bibliographic search yielded nine studies; seven of which were “grey literature” emanating from academic post-graduate studies. Most of the studies were small and often used a non-probabilistic convenience sampling method. Two instruments prevailed: the Questions to Elicit Elder Abuse aimed at older adults and the Caregiver Abuse Screen aimed at caregivers. Community-dwelling older adults self-reported a higher prevalence of abuse (between 66.7 and 86.7 per cent) than care professionals working with older adults suffering from dementia (between 26.7 and 47.4 per cent). Emotional abuse and neglect were the first and second most prevalent forms of abuse, followed by financial abuse. Physical abuse was least prevalent. Poorer perception of health, not making/receiving visits and residing in an urban area were the most consistent variables associated with elder abuse.
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.
Health care, social care or both?: a qualitative explorative study of different focuses in long-term care of older people in France, Portugal and Sweden
- Author:
- EMILSSON Ulla Melin
- Journal article citation:
- European Journal of Social Work, 12(4), December 2009, pp.419-334.
- Publisher:
- Taylor and Francis
The aim of this article is to describe, analyse and compare different approaches on care of older people with dementia, using examples from France, Portugal and Sweden. The questions are principally focused on the participants' attitudes to their tasks, the organisation of work, the professional role and cooperation with other professions. Daily care was studied through observations and participant observations and the staff's opinion was explored by means of interviews. Twenty-two care settings for older people were included. The findings showed that France provided mainly 'health care', Sweden 'social care' and Portugal an integrated 'health care and social care'. From a comparative perspective the Portuguese general care of older people, which focuses on integration of health care, social care and social work, also seems to provide care for older people suffering from dementia which best corresponds to the previously developed group living model.
Dementia, care and education: what needs do demented persons have?; what should caregivers attach importance to?
- Authors:
- HOEG Dorthe, NIELSEN Eva Bonde, SAMUELSSON Gillis
- Publisher:
- Danish National Institute for Elderly Education
- Publication year:
- 1999
- Pagination:
- 78p.,tables.
- Place of publication:
- Frederiksberg
Report of a Europe wide project aiming to promote quality of life for people suffering from neuro-degenerative diseases through an innovative training programme for caregivers developed and adapted to the conditions of the participating member states. The programme also aims to integrate formal and informal care. Contains chapters on: quality of life, the care model, and the GBS scale; organisations involved and population profiles of participating countries; methods used in the studies; needs of people with dementia and what caregivers see as important; the Danish and Finish training programmes; and visions for the future.