Caregivers' perceptions and interpretations of severely demented patients during feeding in a task assignment system

Ninety-one focused interviews concerning the feeding of 23 severely demented patients were performed with 62 caregivers who fed the patients in a task assignment system. The aim was to increase the understanding about how caregivers perceive and interpret severely demented patients' behaviour and experiences during feeding. Content analysis showed that the caregivers' commitment or lack of commitment constituted a superior level that determined whether the patient was seen as a subject or as an object. Subcategories that were found were knowledge of the patient's disease and personal history, intuition, identification, empathy, generalisation and routinisation.     

Caregivers' attitudes to and interpretations of the behaviour of severely demented patients during feeding in a patient assignment care system

The feeding of six severely demented patients was changed from a task assignment to a patient assignment care system. Four caregivers participated in the study. Each caregiver fed her patient during 14 meals. Interviews with the caregivers after meal Nos 1, 7 and 14 revealed that this system made them feel more certain about how to interpret the eating behaviour of the patients. They also experienced a more positive attitude to the patient as well as more satisfaction with their work as feeders.     

Care of demented patients with severe communication problems.

Two time-studies and an interview study were carried out at a geriatric clinic. The aim was to elucidate how much time caregivers use for direct patient care in their contact with severely demented patients compared with non-demented patients as well as how they experience the care of demented patients in a task assignment care system. The analysis showed that more time was used to help non-demented patients than demented patients with the same ADL-performance. Five types of patient reactions to communicative attempts made by the caregivers were described: the patient seems to enjoy contact, he avoids contact, contact leads to aggression, he reacts only sporadically to contact and he does not show any reactions to it. The caregivers described negative reactions to demented patients with communication problems. Communication problems seem to be a threat to caregivers' commitment.     

Initiating and terminating verbal interaction between nurses and severely demented patients regarded as vocally disruptive

Initiating and terminating verbal interaction between nurses and severely demented patients regarded as vocally disruptive.
The care of demented patients requires clear communication during care procedures. Earlier studies have shown that nurses were often vague in their verbal communication and unpublished observations indicated that in some cases demented patients continued to be verbally active after the nurses had left. This study aimed at exploring further the initiating and terminating phases of verbal interaction episodes between nurses and severely demented patients, to explore any relationship between nurses' communication style and vocally disruptive patients. Nine severely demented patients identified as vocally disruptive were tape-recorded between 07.00 h and 13.00 h. Any nurse–patient interaction episode lasting more than 30 s ( n = 58) during care procedures was transcribed verbatim and its verbal communication activity was analysed for content and meta communication, and a communication index was calculated. The results showed strong task orientation and decreased verbal interaction during the course of the interaction. The data supported the assumption that the nurses' communication style increases or decreases patients' vocal activity. Vocal activity after the actual interaction episode seemed to coincide with the parties' communication on various levels, with a different focus of content, and with several nurses being involved in the same procedure. Nurses may become impatient and stressed by their patients' severe communication problems and therefore need to be relieved of this stress and supported so that they can remain close to the patient and be able to interpret his/her communication.     

Observations of assisted feeding among people with language impairment

Aims and objectives. This study examines the phenomenon of assisted feeding among people with language impairment. Background. Patients' experience of assisted feeding is influenced by the caregivers' availability and their other responsibilities. Also, caregivers and patients may have different values with respect to assisted feeding. Methods. Instances of assisted feeding (n?=?42) were observed among people with language impairment admitted to a neurological ward. Field notes were taken simultaneously and in some cases a few simple questions were posed to the caregivers or the patients. All notes and answers were analysed using the phenomenological guidelines of Dahlberg and colleagues (2008, Studentlitteratur AB, Stockholm). Result. The essence of assisted feeding among people living with language impairment was identified to be a transaction characterised by efficiency. The constituents of the essence were in the shadow of institutional structures, accidental relationships with potential humiliation, meal-related conventions versus respect for the individual's wishes, sense of joy threatened by goal-related determination' time being significant for the course of the meal. Conclusion. This study shows that assisted feeding is not important enough to postpone other activities in a neurological ward. Although assisted feeding is an opportunity to enjoy mutual contact and exchange information between the patient and the caregiver, it is a situation where the nutritional aspect of the meal tends to take precedence. We recommend that the focus of recent years on the patients' nutritional status is now supplemented by improvement in the relational and affective aspects of meals, especially for people who require assistance to eat. Relevance to clinical practice. The findings indicate that the institutional conditions for meals need to be reconsidered. For instance caregivers could be exempted from other responsibilities during mealtimes. More flexible time-limits for meals depending on the number of patients with extensive assistance needs is another possibility.     

Eating problems in severely demented patients. Issues and ethical dilemmas

A review of the research on eating problems in severely demented patients gives the impression that, although the general prognosis is bad, there are a lot of things that can be done quite easily that could improve the eating situation for the patient. The most important task, it seems, is to approach the problems from a broad enough perspective to make it possible to treat the patient as a human being first and as a demented patient only secondarily.     

失智症家庭照顾者积极情绪体验的研究进展

阐述积极情绪体验的概念、测量工具,从研究意义、影响因素、干预措施综述失智症家庭照顾者积极情绪体验的研究进展,以期为开展失智症家庭照顾者积极情绪体验干预研究提供参考。     

An ethical analysis of double bind conflicts as experienced by care workers feeding severely demented patients

When patients with incurable dementia diseases no longer take food or fluid voluntarily, the care workers experience distress and anxiety. Thirty-nine care workers were interviewed about their thoughts, feelings and attitudes towards feeding severely demented patients. A phenomenological approach was used and the interviews were developed, attention paid to Bateson's double bind theory, Kohlberg's theory of moral development and ethical theories. Ethical theories, principles and rules, containing messages at different logical levels and the lack of empirical knowledge of the demented patients' inner world, led to the care worker's difficult double bind situations. To solve the conflicts the care workers need insight in all aspects of the problem. In order to understand all the components in a double bind situation it is important to redefine it from outside.     

Feeding of severely demented patients in institutions: interviews with caregivers in Israel

In an exploratory, open-ended, and non-random study, 60 health care workers in nine long-term care institutions in Israel were questioned regarding their experiences, thoughts and feelings related to force feeding senile demented patients. The main findings were analysed according to an ethical decision-making model. Israeli care workers tended to ground their explanations in traditional Jewish sanctity of life ethics. Their actions as well as their emotional reactions seemed the logical outcome of this world view: patients were force fed and caregivers did not feel guilt for using force or accepting suffering, since they felt obliged to preserve life and thus their actions were right. They did feel ugly and upset about the situation. While most caregivers felt that force feeding was the only acceptable route in an institution, some suggested family home care where discretionary case by case ethics was seen as a viable alternative. This paper compares the Israeli interview results with those of the Swedish studies.     

Ethical Reasoning Among Registered Nurses Experienced in Dementia Care

Abstract. Registered nurses regarded as “experienced and good” in dementia care were interviewed about the feeding of a severely demented patient who showed refusal-like feeding behaviour. Not one of the twenty nurses could see herself using force against her patients. Most interviewees justified their decisions to feed a severely demented patient and answered questions about whether they would change their minds if there were certain circumstances in terms of words that could be interpreted as referring to the ethical principle of beneficence. The nurses stressed the difficulty to understand the meaning of severely demented patients' feeding behaviour and decide when force-feeding occurs. When asked to rank ethical principles of importance for the decision, however, the most common answer was that they would give priority to the ethical principle of autonomy. The nurses did not see the ethical principles as separate entities, that could be applied one by one, but tried to integrate them into a whole. The findings of this study were interpreted as indicating that principled ethics is not an adequate model to describe experienced nurses' ethical reasoning.     

Differences between and within genders in caregiving strain: a comparison between caregivers of demented and non-caregivers of non-demented elderly people

Differences between and within genders in caregiving strain: a comparison between caregivers of demented and non-caregivers of non-demented elderly people Fifty-two caregivers for demented and 66 non-caregivers for non-demented elderly were investigated both within a gender and between genders. All participants were relatives and a burden questionnaire was used. The results showed that there was not always a difference between the caregivers for demented and the non-caregivers for non-demented elderly which may indicate that being a relative , even to a non-demented elderly, has obviously its own problems and importance. However, results showed more significant differences between female caregivers and female non-caregivers than between male caregivers and male non-caregivers, with females caring for a demented elderly suffering most strain. Their strain was exhibited by health problems, conflicts in the family, strained relations with family and others, a less positive outlook and limits in social support because of the caregiving situation. When investigating the group of male caregivers and male non-caregivers, it was found that males caring for a demented elderly person experienced a lack of positive outlook and a need for social support. The elderly person's residence in the group of caregivers for demented elderly people and in the group of non-caregivers for non-demented elderly people did not, however, appear to indicate any significant differences.     

Caregiving demands: their difficulty and effects on the well-being of elderly caregivers.

Nurses assess situations involving elderly caregivers, yet data conflict on how caregivers perceive caregiving demands. To develop appropriate research-based interventions, more data are needed on specific aspects of these demands. Discussed are data from interviews with 60 elderly caregivers regarding tasks and personal demands. Results suggest that personal demands are perceived as more difficult than task demands and are associated to a greater extent with caregiver life satisfaction and depression. Issues are raised, however, regarding the measurement of expressed difficulty. Findings also support the adaptive capacity of these caregivers and their commitment to the caregiving role. Implications for nursing practice and nursing science are discussed.     

Effects of the training of integrity--promoting care on the interaction at a long-term ward. Analysis of video-recorded social activities

A training programme in integrity-promoting care was given the staff of a long-term ward and practised during a three months intervention period. The effects were analysed in different parameters and compared with a control ward. This report describes analysis of video-recorded interactions (12 hs) during social activities between demented patients and caregivers and changes induced by the programme. The video-recorded episodes, containing mainly music and coffee sessions were interpreted from a model on interaction with demented patients suggested by Athlin & Norberg. The results indicate that the training programme and the guidance during the intervention resulted in increased understanding of demented patients' situation among the staff. They became more sensitive, adapted their cues and made the environment easier to interpret for the patients. This in turn led to the fact that the patients appeared more sensitive and clear in their cues. A positive circle developed.     

Diagnostic reasoning in the care of a vocally disruptive severely demented patient. A case report.

In order to investigate the effect of nursing investigations based on diagnostic reasoning and research findings on vocally disruptive behaviour in a severely demented patient a single subject study was set up. The nursing diagnoses described problems that seemed connected with sensory deprivation and care that had not been adapted to the patient's abilities. The vocally disruptive behaviour decreased when the nursing treatment plan was followed. When the caregivers stopped following the care plan the disruptive behaviour increased. Another intervention was made and once again the disruptive behaviour decreased. In conclusion the study showed that nursing diagnoses and orders were not enough. The caregivers must also understand the importance of following the care plan and cope with the emotional reactions evoked by the care. Effective leadership, regular supervision of and support to the caregivers seem necessary.     

Weight of practical,conceptual and ethical problems related to spoon feeding of aged patients with diminished mental capacity

This qualitative study is based on twenty observations. Problems with spoon feeding of hospitalized, elder, demented patients are rarely considered. This study aims at analyzing their practical, conceptual and ethical specificities. Ten patients were directly observed and their ten nurses of reference responded to structured interviews. We established three significant observations: 1. The use of spoon feeding appeared inoperative as it did not help resolve the problems that were invoked to justify its implementation. 2. Three months after the observations six patients were deceased, three were able to feed themselves and one did not improve. 3. In all observed cases, spoon feeding was initiated as a tacit evolution, with no formal decision process. To avoid this dead end we consider it indispensable to evolve this feeding practice from its current state of unchallengeable humane duty to the conceptual level of patient care, and to develop evaluation tools which will enable its integration into a structured strategy of nursing interventions.     

Caring for a demented elderly person — burden and burnout among caregiving relatives

Fifty-two family caregivers for demented elderly people were investigated for burden and burnout experiences. A structured burden questionnaire and the Burnout Measure were used. Burnout is described in relation to the caregiver's gender, age, family relationship and the demented person's living place. Older wives and daughters-in-law also risked developing burnout. Regression analysis showed that limitation in social life, poor health and a lack of positive outlook on caring were the most important independent variables explaining variance in burnout among caregivers having their demented elderly person living at home and those having them in an institution.     

Maternal thinking in dementia care

Carers of demented people living in a group dwelling were interviewed and observed individually and together The aim of the study was to illuminate the thinking of pre-identified good dementia carers and to make explicit their means of understanding demented people The tape-recorded and transcribed interviews were interpreted using a phenomenological hermeneutic method The findings showed that these carers explicitly referred to the concept of mother, used when explaining their ability to understand demented people They created a home-like atmosphere together with the inhabitants The findings were interpreted metaphorically as maternal love, thinking and practice in creating an understanding relationship with the demented people they cared for This metaphorical aptitude considered the fulfilment of life for these demented people and included partly unconscious tools that the carers used to compensate for the loss of abilities suffered by the demented people The carers' attitudes towards the inhabitants of the ward and each other were based on respect as in a functioning family Their ambition was interpreted as an attempt to create an atmosphere that functioned not only as an institution, but as an incubator for human lives, which had become dependent on others for their survival and the preservation of their human dignity throughout their physical existence     

Feeding tubes in patients with severe dementia

Patients with advanced dementia are among the most challenging patients to care for because they are often bedridden and dependent in all activities of daily living. Difficulty with eating is especially prominent and distresses family members and health care professionals. Health care professionals commonly rely on feeding tubes to supply nutrition to these severely demented patients. However, various studies have not shown use of feeding tubes to be effective in preventing malnutrition. Furthermore, they have not been demonstrated to prevent the occurrence or increase the healing of pressure sores, prevent aspiration pneumonia, provide comfort, improve functional status, or extend life. High complication rates, increased use of restraints, and other adverse effects further increase the burden of feeding tubes in severely demented patients. Feeding tubes should be avoided in many situations in which they are currently used. The preferable alternative to tube feeding is hand feeding. Though it may not be effective in preventing malnutrition and dehydration, hand feeding allows the maintenance of patient comfort and intimate patient care.     

Measuring feeding difficulty in patients with dementia: perspectives and problems

The feeding problems of demented elderly people are well documented and the need for research into the assessment of feeding difficulty and intervention by nurses has been raised The present paper reviews the literature in this area of care and outlines the problems which exist in attempting to investigate the feeding difficulty of demented patients Demented elderly people display a range of behaviours related to feeding including excessive eating in the early stages of dementia and then difficulty with feeding, refusal to eat and, finally, inability to self-feed at all The problems with research in this area revolve around the issue of measurement of feeding difficulty There are problems in deciding what to measure and in how measurements should be made which are clinically meaningful A possible strategy for investigating the feeding difficulty of demented elderly patients is suggested which includes the design of a tool for measurement and the application of single-case studies Any tool which is used for measurement should enable researchers, in the first instance, and then clinicians to categorize the feeding difficulty of individual patients Moreover, such a tool should also be sufficiently sensitive to respond to change in feeding ability The single-case methodology is considered to be the most ethically and statistically appropriate for research with this particular group of patients