Caring for a person with dementia: exploring relationships between perceived burden, depression, coping and well-being

This study was concerned with identifying the impact of variables such as gender, length of time caring, coping style, depression and perception of caregiving burden on the physical and psychological well-being of carers of persons with dementia. Forty-two carers aged between 21 and 88 years from Blue Care's Homecare Dementia Service and Cairns Aged Care Health Service participated in the study. A cross-sectional survey research design was used, with participants providing information on the Satisfaction with Life Scale, the Center for Epidemiologic Studies Depression Scale, the COPE, Short Form (SF)-12 and the Zarit Caregiver Burden Scale. Perceived burden accounted for 41.7% of the variance in satisfaction with life as a subjective measure of well-being. There were no significant differences between male and female carers. Satisfaction with life was not found to decrease with length of time caring for the dementia sufferer. There were no significant findings in regard to coping style or physical health of carers. The well-being of carers can be enhanced through strategies which lead to a reduced perception of burden, with respite services providing tangible relief from burden.     

Caring for a person with dementia in acute hospitals

Nursing a person with dementia with an acute illness in a hospital setting is a great challenge. This requires negotiating complex interpersonal relationships, and balancing a multiplicity of tasks and roles within social, political and economic constraints. A concerted effort by health professionals and hospital administration to provide appropriate staff education, a multidisciplinary approach, liaison with family carers and access to experts in psychogeriatrics as well as suitable ward environment are positive steps to improving care for a very vulnerable group of patients.     

Living with dementia: communicating with an older person and her family

This article is designed to explore and examine the key components of communication that emerged during the interactional analysis of a role play that took place in the classroom. The 'actors' were nurses who perceived the interaction to reflect an everyday encounter in a hospital ward. Permission to tape the interaction was sought and given by all persons involved. The principal 'players' in the scenario were: the patient, a 70-year-old-woman who had been admitted with dementia, her son and daughter, and the nurse in charge of the ward. The fundamental dynamics of the use of power and restriction, truth telling, family stress, interpersonal conflict, ageism, sexism, empathy and humanism surfaced during the analysis. The findings show that therapeutic communication should be the foundation on which nursing should stand. The article continues with an exploration of the theoretical frameworks that guided the analysis of interaction and concludes by suggesting tentatively some meaningful implications for nursing practice. It plans to furnish provocative new insights into the sometimes covert communication dynamics occurring within the nurse-patient relationship. Finally, it aims to generate discussion on this little-charted realm of human social interaction.     

A relational approach to providing care for a person suffering from dementia

AIMS OF THE PAPER: This paper examines the care provision for people suffering from dementia and explores the potential benefits associated with an approach to care that emphasizes the importance of relationships. BACKGROUND: Recent research findings have provided an incentive to re-evaluate the established approaches to care for this client group. Two separate studies identified education and intellectual stimulation as important determinants of the onset of Alzheimer's disease (Ott et al. 1995, Snowdon et al. 1996). These findings have encouraged the hypothesis that potential symptomatic benefits may be achieved by providing a more stimulating environment for people with dementia. METHODS: A case study is outlined which illustrates an approach to caring influenced by the Continental philosopher, Emmanuel Levinas. Primacy is given to the relationships that make up caring, and not to a method that sets out to achieve an identified objective. The issue of mutual responsibility within the provision of care is highlighted in the case study. FINDINGS: The hypothesis presented in this paper is that a person has more of an opportunity to develop to the limits of their potential by establishing the importance of relationships in providing care by means of education and training of the people involved. The beneficiaries might be the caregiver or the person in receipt of care. CONCLUSIONS: An environment that attempts to educate people to recognize the importance of relationships will be more effective in achieving the potential benefits of symptom alleviation identified by the research into Alzheimer's disease outlined in this paper.     

Caregivers talk about experiences of caring for an older person with dementia

This study explored caregivers' experiences of caring for an older person with dementia by listening to the voices of 15 carers to identify successful management strategies. Some successful management strategies did emerge none saw their approach as a 'successful strategy', just that things worked on certain days. It is suggested that families can be prepared for a 'career' in caring and that early assessment and diagnosis is essential.     

Multisensory environments for leisure: promoting well-being in nursing home residents with dementia

Multisensory environments such as Snoezelen rooms are becoming increasingly popular in health care facilities for older individuals. There is limited reliable evidence of the benefits of such innovations, and the effect they have on residents, caregivers, and visitors in these facilities. This two-stage project examined how effective two types of multisensory environments were in improving the well-being of older individuals with dementia. The two multisensory environments were a Snoezelen room and a landscaped garden. These environments were compared to the experience of the normal living environment. The observed response of 24 residents with dementia in a nursing home was measured during time spent in the Snoezelen room, in the garden, and in the living room. In the second part of the project, face-to-face interviews were conducted with six caregivers and six visitors to obtain their responses to the multisensory environments. These interviews identified the components of the environments most used and enjoyed by residents and the ways in which they could be improved to maximize well-being.     

Representations of people with dementia – subaltern,person, citizen

GILMOUR JA and BRANNELLY T. Nursing Inquiry 2010; 17 : 240–247
Representations of people with dementia – subaltern, person, citizen This study traces shifts in health professional representations of people with dementia. The concepts of subaltern, personhood and citizenship are used to draw attention to issues around visibility, voice and inclusion. Professional discourses and practices draw upon, and are shaped by historical and contemporary representations. Until recently, people with dementia were subaltern in nursing and medical discourses; marginalised and silenced. The incorporation of contemporary representations foregrounding personhood and citizenship into health professional accounts provide space for transformative styles of care. Privileging personhood centralises the person with dementia in social networks, focusing on their experiences and relationships. Respecting citizenship involves challenging discrimination and stigma: nursing from a rights‐based approach necessitates listening and being responsive to the needs of the person with dementia. Incorporating contemporary representations in health professional practice requires the discarding of the historically dominant elite and authoritarian accounts of dementia still apparent in some nursing texts along with, perhaps, the historically burdened term of dementia itself.     

Emotional well-being and adjustment to vision loss in later life: a meta-synthesis of qualitative studies

Purpose: To review perceived emotional well-being in older people with visual impairment and perceived factors that inhibit/facilitate psychosocial adjustment to vision loss. Method: The databases of MEDLINE, EMBASE, PsycINFO and CINAHL were searched for studies published from January 1980 to December 2010, which recruited older people with irreversible vision loss, and used qualitative methods for both data collection and analysis. Results sections of the papers were synthesised using a thematic-style analysis to identify the emergent and dominant themes. Results: Seventeen qualitative papers were included in the review, and five main themes emerged from the synthesis: 1) the trauma of an ophthalmic diagnosis, 2) impact of vision loss on daily life, 3) negative impact of visual impairment on psychosocial well-being, 4) factors that inhibit social well-being, and 5) factors that facilitate psychological well-being. We found the response shift model useful for explaining our synthesis. Conclusions: Acquired visual impairment can have a significant impact on older people’s well-being and make psychosocial adjustment to the condition a major challenge. Acceptance of the condition and a positive attitude facilitate successful psychosocial adjustment to vision loss as well as social support from family, friends and peers who have successfully adjusted to the condition.

Implications for Rehabilitation

• Visual impairment can have a profound negative impact on individuals’ psychosocial well-being.

• The emotional needs of those with visual impairment should not to be neglected, particularly those recently diagnosed.

• Referrals to services may be appropriate for individuals with vision loss (e.g. counselling and peer support groups).

• It may also be appropriate to discuss with individuals the factors that inhibit/facilitate psychosocial adjustment to vision loss.

     

Experiences of physical strain during person transfer situations in dementia care units

Caring for residents with dementia impose a higher challenge and workload on the nursing staff because of a higher degree of motor function and cognitive decline among the residents. Training in person transfer tasks for nursing staff has mostly been concentrated on ergonomics irrespective of the nature of the resident's functional decline. An increased knowledge about the nursing staffs' experiences of physical workload in dementia care and in how to reduce their physical strain is needed.
Aim:  The aim of the study was to describe nurse's aids' experiences of physical strain during person transfer tasks at dementia care units.
Method:  Four focus group interviews with altogether 16 nurses' aids, working at special care units for people with dementia, were performed.
Results:  The results show that knowledge about the disease and personality of residents in dementia care units can help to decrease the physical strain on nurses' aids in person transfer situations.
Nurse's aids need to be flexible when performing transfer tasks to accommodate variations in the resident's functional ability. Physical strain associated with person transfer tasks is not related to the weight of the resident. Misunderstandings because of cognitive decline and communication problems increase physical strain on nurses' aids. Specialized training in person transfer tasks is needed for nurse's aids working in dementia care.
Conclusions:  These results may serve to guide physiotherapists working in dementia care units in assessing residents' functional ability, in when to use assistive devices and mobility aids and in training and supervising nurse's aids in person transfer tasks.     

Communicating with a deafblind person in an emergency

Deafblind UK is the association of deafblind and dual sensory impaired people in the UK. This paper presents advice on the best way to communicate with people who are disabled in this way, particularly in an emergency.     

Emotional disclosure through patient narrative may improve pain and well-being: results of a randomized controlled trial in patients with cancer pain

Narrative medicine is based upon physicians' awareness of patients' narration of their suffering, their hopes, and how illness has affected them. It offers a model for improving health outcomes. To determine whether incorporating a narrative approach in patients with cancer decreases pain intensity and improves their global sense of well-being, we performed a randomized, single-blind controlled trial in adult patients with cancer and average pain intensity levels of at least 5/10. Two hundred thirty-four patients were randomized into three groups: (1) narrative (n=79), in which patients wrote a story about how cancer affected their lives for at least 20 minutes once a week for three weeks; (2) questionnaire (n=77), in which patients filled out the McGill Pain Questionnaire; and (3) control (n=78), in which patients came weekly to medical visits during which they received usual customary care. Patients rated their pain on a 0-10 scale and their well-being on a seven-point Likert scale weekly for eight weeks. Two raters independently evaluated the emotional content of the narratives. Pain intensity and sense of well-being were similar in all groups before and after treatment. Subgroup analyses showed that patients whose narratives had high emotional disclosure had significantly less pain and reported higher well-being scores than patients whose narratives were less emotional. Further study is needed to demonstrate whether the implementation of narrative medicine is associated with health benefits in this and other contexts.     

Everyday occupation, well-being, and identity: the experience of caregivers in families with dementia.

The purpose of this study was to gain understanding of the nature of the daily occupations of caregivers for family members with dementia as related to the caregivers' perceptions of well-being. Qualitative telephone interviews, focused on the experience of caregiving, were conducted with 33 caregiver-respondents; the data were transcribed and analyzed using a phenomenological approach. Everyday occupation emerged as a phenomenon that was central to the caregivers' ways of evaluating and monitoring well-being in the care receivers and themselves. Further, occupational engagement served to help mitigate the potential biographical disruption of the dementia caregiving experience. The implications for occupational therapy personnel are convincing: Everyday occupation holds promise for contributing to the relative well-being of both caregivers and care receivers and for facilitating continuity of relationships and identity for the caregiver.