Dementia: the International Journal of Social Research and Practice, 14(2), 2015, pp.145-163.
Publisher:
Sage
The number of persons with dementia who lives at home for a longer period of time after diagnosis is increasing. This study aims to discuss the phenomenon of living alone with dementia and having a manifest care need. This phenomenological study was carried out from a reflective lifeworld approach. The data material in the study consisted of field notes from 32 visits and transcriptions from 11...
(Edited publisher abstract)
The number of persons with dementia who lives at home for a longer period of time after diagnosis is increasing. This study aims to discuss the phenomenon of living alone with dementia and having a manifest care need. This phenomenological study was carried out from a reflective lifeworld approach. The data material in the study consisted of field notes from 32 visits and transcriptions from 11 tape-recorded conversations with six participants. The results reveal that the person with dementia who lives alone ends up in a vague existence where they cannot survive alone. The person’s level of activity comes to a halt and body movement becomes slower. Daily life becomes more difficult to manage and the person’s earlier natural way of relating to the world and the people around them is gradually lost. This is followed by a loneliness and forgetfulness that cloud the meaning of life. This study highlights the importance of the patient’s perspective needed to better understand the inner life of a person who suffers from dementia. This understanding is important in the organization of help and care as well as for caregivers to better understand these individuals and their needs.
(Edited publisher abstract)
Subject terms:
dementia, activities of daily living, needs, loneliness;
Although the number of people with dementia in black and minority ethnic communities in the UK is increasing, research on this subject is limited. This report outlines the learning from a one-day learning event, run jointly by the Race Equality Foundation and Age UK. The event brought together practitioners from across the voluntary, community and statutory sectors, to explore ways to deliver...
(Edited publisher abstract)
Although the number of people with dementia in black and minority ethnic communities in the UK is increasing, research on this subject is limited. This report outlines the learning from a one-day learning event, run jointly by the Race Equality Foundation and Age UK. The event brought together practitioners from across the voluntary, community and statutory sectors, to explore ways to deliver better support to black and minority ethnic older people living with dementia. It was funded by the Department of Health as part of the Health and Voluntary Sector Strategic Partnership Programme, of which Age UK and the Race Equality Foundation are both partners. This paper summarises the issues raised by speakers and participants, particularly in relation to risk factors associated with dementia, such as stigma and language barriers. It sets out examples of good practice for statutory services, the voluntary sector and individuals to support black and minority people living with dementia. The learning event also saw the launch of a new briefing paper, ‘Black and minority ethnic communities and dementia: where are we now?’ produced by David Truswell for the Race Equality Foundation’s Better Health briefing collection.
(Edited publisher abstract)
Subject terms:
dementia, black and minority ethnic people, needs, good practice;
A tool for people with dementia to complete that lets health and social care professionals know about their needs, interests, preferences, likes and dislikes. It enables health and social care professionals to see the person as an individual and deliver person-centred care that is tailored specifically to the person's needs. It is relevant for people with dementia who are receiving professional
(Edited publisher abstract)
A tool for people with dementia to complete that lets health and social care professionals know about their needs, interests, preferences, likes and dislikes. It enables health and social care professionals to see the person as an individual and deliver person-centred care that is tailored specifically to the person's needs. It is relevant for people with dementia who are receiving professional care in any setting - at home, in hospital, in respite care or a care home.
(Edited publisher abstract)
Subject terms:
dementia, person-centred care, service users, needs;
Nursing and Residential Care, 13(4), April 2011, pp.186-188.
Publisher:
MA Healthcare Ltd.
Place of publication:
London
A series of interviews were carried out with 17 older people with sight loss and dementia, 17 family carers and 18 care professionals who worked with them. The study aimed to discover the impact of sight loss and dementia, identify needs and make recommendations for supporting older people across care settings. A summary of the findings and recommendations for practice are presented.
A series of interviews were carried out with 17 older people with sight loss and dementia, 17 family carers and 18 care professionals who worked with them. The study aimed to discover the impact of sight loss and dementia, identify needs and make recommendations for supporting older people across care settings. A summary of the findings and recommendations for practice are presented.
Journal of Dementia Care, 12(4), July 2004, pp.25-27.
Publisher:
Hawker
Discusses a step-by-step approach to a view of dementia care through 'spiritually enhanced active listening', engaging fully with the person with dementia in the context of their spiritual needs and expressions.
Discusses a step-by-step approach to a view of dementia care through 'spiritually enhanced active listening', engaging fully with the person with dementia in the context of their spiritual needs and expressions.
International Journal of Geriatric Psychiatry, 9(1), January 1994, pp.47-50.
Publisher:
Wiley
Fifteen carers of people with presenile dementia in the LB Sutton were interviewed about their experiences of the services that had been provided to them. The carers were generally satisfied once they had been referred to the local elderly mental health team. There was, however, often a significant delay before they were referred to specialist help and they would have liked more support
Fifteen carers of people with presenile dementia in the LB Sutton were interviewed about their experiences of the services that had been provided to them. The carers were generally satisfied once they had been referred to the local elderly mental health team. There was, however, often a significant delay before they were referred to specialist help and they would have liked more support and information around the time of diagnosis. When asked about what additional services were required, carers were particularly concerned about the lack of appropriate day care for their relative. Carers whose relative had been admitted to long-term care reported finding the process of admission distressing. High levels of stress were found among all the carers. The importance of providing emotional support to this group of carers is emphasized.
Dementia: the International Journal of Social Research and Practice, 18(2), 2019, pp.448-470.
Publisher:
Sage
Spirituality is an important aspect of humanity. Concerned with deriving meaning from events, and connection with others, it provides a mechanism for some to cope with illness and disability. While spiritual support is recognised as important, little is known about the spiritual needs of those people experiencing dementia. This meta-synthesis considers the experiences of spirituality from...
(Publisher abstract)
Spirituality is an important aspect of humanity. Concerned with deriving meaning from events, and connection with others, it provides a mechanism for some to cope with illness and disability. While spiritual support is recognised as important, little is known about the spiritual needs of those people experiencing dementia. This meta-synthesis considers the experiences of spirituality from the perspective of people living with a diagnosis of dementia. Using a review protocol, key words from a preliminary scoping review were used to direct database searches in November 2013. A total of 667 papers were initially identified. However, following careful quality review assessment a final eight papers were selected. Findings demonstrated the ongoing importance of spirituality to people living with dementia and its importance as a means of finding hope, meaning and linkage with past, present and future. Expression of spirituality through faith practices, contact with faith communities, and the impact of dementia on these, were also highlighted.
(Publisher abstract)
Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL). Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured...
(Publisher abstract)
Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL). Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses. Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both. Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.
(Publisher abstract)
Subject terms:
dementia, needs, unmet need, quality of life, carers;
Background and Objectives: Approximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study, the authors propose that a needs-led approach can provide a useful, novel means of conceptualising the impact of caring on the lives of family carers. The aim was to develop and present a needs-led
(Edited publisher abstract)
Background and Objectives: Approximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study, the authors propose that a needs-led approach can provide a useful, novel means of conceptualising the impact of caring on the lives of family carers. The aim was to develop and present a needs-led framework for understanding how providing care impacts on carers’ fulfilment of needs. Design and Methods: In this qualitative study, the authors conducted 42 semistructured interviews with a purposively diverse sample of family carers to generate nuanced contextualised accounts of how caring impacted on carers’ lives. The inductive thematic analysis focused upon asking: “What need is being impacted here?” in order to generate a needs-led framework for understanding. Results: Nine themes were widely endorsed. Each completed the sentence: “Being a carer impacts on fulfilling my need to/for….”: Freedom; feel close to my relative; feel in control of my life; be my own person; protect my relative; share/express my thoughts and feelings; take care of myself; feel connected to the people around me; get things done. Discussion and Implications: These needs echo those from other research areas, with relational needs emerging as particularly central. The needs-led approach offers a perspective that is able to capture both stresses and positive aspects of caregiving. The authors recommend that clinical interviewing using Socratic questioning to discover human needs that are being impacted by caring would provide a valuable starting point for care planning.
(Edited publisher abstract)
Subject terms:
quality of life, dementia, carers, needs, user views;