Robin Digby

People with dementia and the hospital environment: the view of patients and family carers

BACKGROUND A metropolitan geriatric evaluation and management (GEM) facility in Australia was undergoing expansion, and consideration for the needs of individuals with dementia and their family carers was identified as important in planning the new facility. Existing literature revealed that people in hospital value privacy, minimal noise, family amenities and homeliness, but these findings did not consider the perspectives of the person with dementia specifically. AIM The aim was to elicit the perspectives of current inpatients with dementia, and their family carers, about the environment/design features that they believe are necessary for people with dementia, and their family carers. METHOD AND DESIGN This qualitative study utilised in-depth semi-structured interviews to obtain information from current inpatients with dementia and their family carers. RESULTS Participants described how the care received was more important than the physical environment; however, participants also valued homeliness, privacy for the patient and for conversations, a shared space without a television and a connection to the outside. Participants described how accommodating carers, providing quiet spaces and appropriate amenities were also important. CONCLUSIONS While participants valued care over the physical surroundings, they also offered valuable information about their experience in the ward environment. Despite cognitive difficulties, people with dementia were able to provide useful information about the environment within which they were being cared. IMPLICATIONS FOR PRACTICE Consumer opinions about hospital design/environment should be considered as an important source of data. Privacy and personal space for people with dementia and their family carers, a connection with the outside environment , and the needs of carers and visitors are all important considerations when designing healthcare environments.

Interviewing people with dementia in hospital: recommendations for researchers

AIMS AND OBJECTIVES This article aims to: Discuss the inclusion of the perspectives of people with dementia in research. Consider the major challenges involved in the process of interviewing people with dementia. Provide recommendations for those involved in interviewing people with dementia in hospital. BACKGROUND People with dementia are frequent consumers of health care and often have a poor experience in hospital but have been largely excluded from direct participation in research until recently. Limited understanding of the specific communication needs of people with dementia restricts access to the persons viewpoint. Recommendations for interviewers which consider the specific requirements of people with dementia are presented. DESIGN/METHOD This is a discursive article drawing on the experience of interviewing people with dementia in three separate studies. The conclusions that will be discussed are recommendations for researchers which were formulated following examination of the reflective journals written during the data collection phases of the studies and analysis of the data from the perspective of interviewer performance. RESULTS Six main issues have been identified and discussed with reference to Habermass theory of communicative action. CONCLUSIONS Interviewing people with dementia requires specific skills including an ability to be emotionally sensitive and respectful of the person. This engagement can be challenging and complex for the interviewer. It is vital that genuine engagement and mutual recognition are established before the interview is attempted. A more meaningful research outcome is likely to be the result. RELEVANCE TO CLINICAL PRACTICE The suggestions outlined here are relevant to a variety of people who are in contact with people with dementia in clinical settings. Developing the skills of researchers in this area needs a commitment by organisations to promote the inclusion of the perceptions of people with dementia in research and in discussions about their own care.

Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia.

Objectives: Transitioning from the primary caregiver to the visitor in a long-term care facility may be challenging for the caregiver; they are required to surrender their caring duties to the medical and nursing staff. The aim of this study was to explore the experiences of caregivers during their transition from day-to-day caregiver of a person with dementia to a visitor in a long-term care facility. Methods: This study utilised a qualitative descriptive design. Twenty caregivers of people with dementia were recruited from the one Aged Rehabilitation and Geriatric Evaluation and Management facility, located in Victoria, Australia. Semi-structured interviews were used to explore the caregivers experiences. Interviews were analysed using thematic analysis. Results: The interview data revealed that the participants were undergoing similar experiences. The findings revealed that it was difficult for the caregiver to transition to their new role of visitor; negative reactions of grief, loss of motivation and loneliness were also coupled with positive feelings of relief and the reassurance that their relative or friend would be well cared for and safe within the long-term care facility. Conclusion: The findings offer insight into the experiences felt by caregivers when their relative or friend with dementia is admitted to hospital. Implications of this study include the need to improve the transition process for the caregiver by allowing them to be involved in the decision-making process, keeping them informed of care decisions, and importantly, providing emotional support to help the caregiver positively adapt to this transition.

End-of-life care in a rehabilitation centre for older people in Australia

To investigate processes at the end of life for patients who died in a subacute evaluation and management facility for older people.

End-of-Life Care in an Australian Rehabilitation Facility for Older People: Staff Focus Groups

A qualitative study of staff experiences of end-of-life care for older people in a subacute rehabilitation facility was undertaken using three focus groups with senior multidisciplinary staff (5), junior nurses (8), and junior allied health staff (7). Content analysis revealed four major themes: being a key contact person; the quality of end–of-life care; referring to off-site service providers; and differing perspectives. These data have implications for multidisciplinary practice including staff education and capacity to change focus of care in facilities for older people dedicated to rehabilitation rather than palliation or end-of-life care.

The liminality of the patient with dementia in hospital

Aims and objectives The aim was to explore the experiences of people with dementia in subacute geriatric rehabilitation hospitals to critically evaluate the care received by such patients. Background Globally, the number of people with dementia is growing and is expected to impact progressively more on health systems. People with dementia can become deconditioned and deteriorate in cognitive function while in hospital. The unfamiliar environment and people can cause the person to become disorientated, which then leads to behavioural symptoms which complicate care. Design Critical ethnography. Methods Methods included observation with field notes and 30 audio-recorded conversational interviews with patients with dementia in an Australian subacute care setting. Data were collected in May–December 2014, transcribed verbatim and analysed using thematic analysis. Results The central theme identified that patients with dementia described a liminal experience and felt like outsiders in the hospital environment. This was supported by the subthemes of not understanding why they were being kept in hospital, feeling lost in the space, bored, anxious about discharge plans and lacking intersubjective relationships. Many felt imprisoned by the locked wards. There was little evidence of nursing care delivered in an empathetic person-centred way. Nurses were busy and engaged with the patients only superficially. Conclusions People with dementia can have a liminal experience and feel like outsiders in this environment, which does not cater for the specific needs of this patient group. It should be acknowledged that people with dementia require additional resources. A caring nurse–patient relationship is fundamental to the patient experience. Nurses require further support and education about dementia in order to deliver quality care to this patient group. Relevance to clinical practice These findings will influence nurse leaders to advocate for improved resources for nurses to provide appropriate care for patients with dementia in subacute geriatric hospitals. The clinical practice of nurses needs to be supported with education, pyschological and material support to improve the therapeutic environment for patients with cognitive impairment resulting from dementia.AIMS AND OBJECTIVES The aim was to explore the experiences of people with dementia in subacute geriatric rehabilitation hospitals to critically evaluate the care received by such patients. BACKGROUND Globally, the number of people with dementia is growing and is expected to impact progressively more on health systems. People with dementia can become deconditioned and deteriorate in cognitive function while in hospital. The unfamiliar environment and people can cause the person to become disorientated, which then leads to behavioural symptoms which complicate care. DESIGN Critical ethnography. METHODS Methods included observation with field notes and 30 audio-recorded conversational interviews with patients with dementia in an Australian subacute care setting. Data were collected in May-December 2014, transcribed verbatim and analysed using thematic analysis. RESULTS The central theme identified that patients with dementia described a liminal experience and felt like outsiders in the hospital environment. This was supported by the subthemes of not understanding why they were being kept in hospital, feeling lost in the space, bored, anxious about discharge plans and lacking intersubjective relationships. Many felt imprisoned by the locked wards. There was little evidence of nursing care delivered in an empathetic person-centred way. Nurses were busy and engaged with the patients only superficially. CONCLUSIONS People with dementia can have a liminal experience and feel like outsiders in this environment, which does not cater for the specific needs of this patient group. It should be acknowledged that people with dementia require additional resources. A caring nurse-patient relationship is fundamental to the patient experience. Nurses require further support and education about dementia in order to deliver quality care to this patient group. RELEVANCE TO CLINICAL PRACTICE These findings will influence nurse leaders to advocate for improved resources for nurses to provide appropriate care for patients with dementia in subacute geriatric hospitals. The clinical practice of nurses needs to be supported with education, pyschological and material support to improve the therapeutic environment for patients with cognitive impairment resulting from dementia.

The liminality of the patient with dementia in geriatric rehabilitation hospitals

Aims and objectives The aim was to explore the experiences of people with dementia in subacute geriatric rehabilitation hospitals to critically evaluate the care received by such patients. Background Globally, the number of people with dementia is growing and is expected to impact progressively more on health systems. People with dementia can become deconditioned and deteriorate in cognitive function while in hospital. The unfamiliar environment and people can cause the person to become disorientated, which then leads to behavioural symptoms which complicate care. Design Critical ethnography. Methods Methods included observation with field notes and 30 audio-recorded conversational interviews with patients with dementia in an Australian subacute care setting. Data were collected in May–December 2014, transcribed verbatim and analysed using thematic analysis. Results The central theme identified that patients with dementia described a liminal experience and felt like outsiders in the hospital environment. This was supported by the subthemes of not understanding why they were being kept in hospital, feeling lost in the space, bored, anxious about discharge plans and lacking intersubjective relationships. Many felt imprisoned by the locked wards. There was little evidence of nursing care delivered in an empathetic person-centred way. Nurses were busy and engaged with the patients only superficially. Conclusions People with dementia can have a liminal experience and feel like outsiders in this environment, which does not cater for the specific needs of this patient group. It should be acknowledged that people with dementia require additional resources. A caring nurse–patient relationship is fundamental to the patient experience. Nurses require further support and education about dementia in order to deliver quality care to this patient group. Relevance to clinical practice These findings will influence nurse leaders to advocate for improved resources for nurses to provide appropriate care for patients with dementia in subacute geriatric hospitals. The clinical practice of nurses needs to be supported with education, pyschological and material support to improve the therapeutic environment for patients with cognitive impairment resulting from dementia.AIMS AND OBJECTIVES The aim was to explore the experiences of people with dementia in subacute geriatric rehabilitation hospitals to critically evaluate the care received by such patients. BACKGROUND Globally, the number of people with dementia is growing and is expected to impact progressively more on health systems. People with dementia can become deconditioned and deteriorate in cognitive function while in hospital. The unfamiliar environment and people can cause the person to become disorientated, which then leads to behavioural symptoms which complicate care. DESIGN Critical ethnography. METHODS Methods included observation with field notes and 30 audio-recorded conversational interviews with patients with dementia in an Australian subacute care setting. Data were collected in May-December 2014, transcribed verbatim and analysed using thematic analysis. RESULTS The central theme identified that patients with dementia described a liminal experience and felt like outsiders in the hospital environment. This was supported by the subthemes of not understanding why they were being kept in hospital, feeling lost in the space, bored, anxious about discharge plans and lacking intersubjective relationships. Many felt imprisoned by the locked wards. There was little evidence of nursing care delivered in an empathetic person-centred way. Nurses were busy and engaged with the patients only superficially. CONCLUSIONS People with dementia can have a liminal experience and feel like outsiders in this environment, which does not cater for the specific needs of this patient group. It should be acknowledged that people with dementia require additional resources. A caring nurse-patient relationship is fundamental to the patient experience. Nurses require further support and education about dementia in order to deliver quality care to this patient group. RELEVANCE TO CLINICAL PRACTICE These findings will influence nurse leaders to advocate for improved resources for nurses to provide appropriate care for patients with dementia in subacute geriatric hospitals. The clinical practice of nurses needs to be supported with education, pyschological and material support to improve the therapeutic environment for patients with cognitive impairment resulting from dementia.