Healthcare staffs’ experiences and perceptions of caring for people with dementia in the acute setting: Qualitative evidence synthesis

BackgroundDementia is a global issue, with increasing prevalence rates impacting on health services internationally. People with dementia are frequently admitted to hospital, an environment that may not be suited to their needs. While many initiatives have been developed to improve their care in the acute setting, there is a lack of cohesive understanding of how staff experience and perceive the care they give to people with dementia in the acute setting.ObjectivesThe aim of this qualitative synthesis was to explore health care staffs’ experiences and perceptions of caring for people with dementia in the acute setting. Qualitative synthesis can bring together isolated findings in a meaningful way that can inform policy development.SettingsA screening process, using inclusion/exclusion criteria, identified qualitative studies that focused on health care staff caring for people with dementia in acute settings.ParticipantsTwelve reports of nine studies were included for synthesis. Data extraction was conducted on each report by two researchers.MethodsFramework synthesis was employed using VIPS framework, using Values, Individualised, Perspective and Social and psychological as concepts to guide synthesis. The VIPS framework has previously been used for exploring approaches to caring for people with dementia. Quality appraisal was conducted using Critical Appraisal Skills Programme (CASP) and NVivo facilitated sensitivity analysis to ensure confidence in the findings.ResultsKey themes, derived from VIPS, included a number of specific subthemes that examined: infrastructure and care pathways, person-centred approaches to care, how the person interacts with their environment and other patients, and family involvement in care decisions. The synthesis identified barriers to appropriate care for the person with dementia. These include ineffective pathways of care, unsuitable environments, inadequate resources and staffing levels and lack of emphasis on education and training for staff caring for people with dementia.ConclusionsThis review has identified key issues in the care of people with dementia in the acute setting: improving pathways of care, creating suitable environments, addressing resources and staffing levels and placing emphasis on the education for staff caring for people with dementia. Recommendations are made for practice consideration, policy development and future research. Leadership is required to instil the values needed to care for this client group in an effective and personcentred way. Qualitative evidence synthesis can inform policy and in this case, recommends VIPS as a suitable framework for guiding decisions around care for people with dementia in acute settings.     

Collecting data on the experiences and perspectives of people with dementia in the acute care hospital setting: A systematic scoping review

Background

People with dementia frequently experience poor health outcomes that require hospitalisation; however, the hospital setting is generally unsuitable for these patients. While it is well-recognised that understanding patient perspectives is crucial to providing person-centred care, current clinical care guidelines do not describe how to effectively collect feedback from people with dementia. Historically, people with dementia have generally been neglected from data collection exercises among practitioners and academic researchers, alike.

Objective

The objective of this review is to describe the data collection processes from peer-reviewed evidence sources that include direct consultation with, and elicit feedback from, patients with dementia about their care experience in the hospital setting.

Methods

The protocol for this systematic scoping review was pre-registered ( https://doi.org/10.6084/m9.figshare.16614667.v1 ). The review considered primary quantitative and qualitative research involving people with dementia as research participants, regarding the quality of hospital care from the patient's perspective. Four databases were searched (MEDLINE, CINAHL Complete, APA PsycINFO and Embase), with 14 studies meeting the eligibility criteria.

Results

There has been an increased interest in gaining the perspectives of people with dementia on their health care over the past 5 years. Sundry methodologies were employed by these studies, but most used informal qualitative interviews to support and enable participants with diverse symptoms and functional abilities to take part. Procedures concerning recruitment, ethics and consent, and data collection processes were, likewise, varied and not reported consistently across this body of evidence.

Conclusions

People with dementia can be meaningfully consulted as research participants in the hospital setting. Increased rigour when reporting the methodologies and strategies used during data collection is needed to provide guidance for health services and researchers to further enable the inclusion of people with dementia.

Implications for practice

Including people with dementia in data collection endeavours in the hospital setting is essential to improving health outcomes, increasing equity and providing better hospital service delivery to this vulnerable cohort.     

Caring for people with dementia disease (DD) and working in a private not‐for‐profit residential care facility for people with DD

Caring for people with dementia and working in dementia care is described as having both rewarding and unpleasant aspects and has been studied to a minor extent. This study aims to explore care providers' narrated experiences of caring for people with dementia disease (DD) and working in a private not‐for‐profit residential care facility for people with DD. Nine care providers were interviewed about their experiences, the interviews were recorded, transcribed and analysed using thematic analysis. The analysis revealed that participants were struggling to perform person‐centred care, which meant trying to see the person behind the disease, dealing with troublesome situations in the daily care, a two‐edged interaction with relatives, feelings of shortcomings and troubled conscience, and the need for improvements in dementia care. The analysis also revealed an ambiguous work situation, which meant a challenging value base, the differently judged work environment, feelings of job satisfaction and the need for a functional leadership and management. The results illuminate participants' positive as well as negative experiences and have identified areas requiring improvements. It seems of great importance to strive for a supportive and attendant leadership, a leadership which aims to empower care providers in their difficult work. Using conscience as a driving force together in the work group may benefit care providers' health.     

Caring for older people with dementia in residential care: nursing students' experiences

AIM: This paper is a report of selected findings from two projects aimed at improving nursing students' experiences of caring for older people in elder care settings. BACKGROUND: With a growing number of older people the prevalence of dementia is rapidly increasing, such that it is now a primary reason for admission to residential care. This has implications for the preparation and support of nursing students on clinical placements as people with dementia represent a key focus of their nursing activities. METHOD: Two projects were conducted in Tasmania between 2001 and 2005, involving 87 second year Bachelor of Nursing students who participated in 3-week clinical placements in eight residential elder care facilities. During the placements, students and their mentors participated in a series of weekly focus group discussions to explore their experiences of caring for residents with dementia. Thematic analysis of the data was conducted. FINDINGS: Staff in the facilities struggled to support students effectively and often failed to recognize that students found residents' behaviour disturbing. Despite having some theoretical understanding of dementia, students reported being unsure of how to respond to residents and often felt scared and intimidated. CONCLUSION: Better preparation and support are needed for students on placements involving residents with dementia. Feasible strategies for more effective support include increased curriculum content about caring for people with dementia, and improved collaboration between university schools of nursing and settings for care of older people.     

The significance of overlooked objects: Materiality and care at home for people with dementia

An increase in the number of older people with dementia is currently a trend around the world. In low and middle countries, effective public health services are not yet well‐developed, and family care‐givers may be overwhelmed by the requirements of care. This paper has two purposes: to share findings from an ethnographic study about family dementia care practices in Brazil and to draw attention to the significance of the materiality of care practices in the family context. The study was conducted in Belo Horizonte, Brazil. We describe the care trajectory of one family and, analysing data using the insights of Actor Network Theory, show the significance of objects in a networked relation of care. In particular, we show how incontinence products such as adult diapers assume different positions in the network, acting as either mediator or intermediary of care in relation to other elements of the network composed of family members and their living situation, the person with dementia herself, the doctor, and Brazilian health policies. Although the diaper is often seen as an ordinary object for care providers, its participation in a care network shapes relations, activating conflict, financial constraint, and disciplining the body of the person with dementia.     

A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia

Aim. This paper considers the challenges of delivering effective palliative care to older people with dementia and the possible strategies to overcome barriers to end-of-life care in these patients. Background. In UK alone, approximately 100 000 people with dementia die each year and as the number of older people increases, dementia is set to become even more prevalent. Dementia is a progressive terminal illness for which there is currently no cure. Patients dying with dementia have significant health-care needs and in recent years it has been recognised that palliative care should be made available to everyone regardless of diagnosis, as this improves comfort and quality of life. Despite this, patients dying with dementia are often still not given access to palliative care services. Method. A review of English language literature published after 1996 to the present day relating to older people with dementia during the terminal phase of their illness. Results. Twenty-nine articles met inclusion criteria for the review. Most originated from North America and UK and were mostly quantitative in nature. Four key themes were identified: difficulties associated with diagnosing the terminal phase of the illness (prognostication); issues relating to communication; medical interventions; and the appropriateness of palliative care intervention. Conclusions. This review reinforces the importance of providing appropriate palliative care to individuals suffering from end-stage dementia and identifies some of the barriers to extending such specialist palliative care provision. Relevance to practice. There is an urgent need to improve palliative care provision for older people with end-stage dementia and, in addition, more research is required on the needs of patients entering the terminal phase of dementia to assist the allocation of appropriate resources and training to ensure quality and equality in the provision of end-of-life care.     

Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes

Background

The older person with dementia has a limited life expectancy and the dying trajectory can be protracted and unpredictable. For good end-of-life care, early communication, exploration of residents’ wishes, and identification of someone who can represent them, are important. In care homes the timing of these discussions, and who is involved is variable. Person-centred approaches to dementia care assume that people with dementia can actively participate in decisions about their lives. Less well understood is how this can inform end-of-life care decision making and complement information provided in advance care plans completed prior to, or at the point of admission to a care home.

Objectives

To explore how older people with dementia discuss their priorities and preferences for end-of-life care.

Methods

An exploratory, qualitative study that used guided conversations with 18 people with dementia, living in six care homes. Participants were asked about their life in the care home, their health, thoughts for the future, and wishes surrounding end of life. Data were analysed thematically.

Results

People with dementia's accounts of life in the care home, what they valued, and the impact of having dementia on how they participated in decision making, provided key insights into care preferences. Three linked themes that had relevance for thinking and talking about end of life were identified: “dementia and decision making”, “everyday relationships” and “place and purpose”. Older people with dementia's accounts of everyday experiences of care, key relationships with family and care home staff members and whether they accepted the care home as their home demonstrated what was important for them now and for the future.

Conclusion

For older people living with a diagnosis of dementia, the experience of living and dying in a care home is inextricably linked. End-of-life care planning and decision making by health care professionals, care home staff and family could be enriched by exploring and documenting the preoccupations, key relationships and wishes about everyday care of people with dementia.     

Dementia palliative care: A multi-site survey of long term care STAFF’S education needs and readiness to change

Many people with dementia reside in long-term care, where limited staff knowledge of dementia palliative care has been identified, along with poor awareness that a palliative approach can assist in identifying unmet care needs. Evidence-based guidance in palliative care for people with dementia is available however, implementing this guidance requires staff engagement and a tailored educational approach. This pre-implementation situational analysis informed a tailored staff education intervention to support the implementation of national guidance on dementia palliative care in long term care. Using a cross-sectional study design, underpinned by the Consolidated Framework for Implementation Research, survey data were collected on site profile, staff demographics, learning needs, and readiness-to change at three residential care sites for older people in Ireland. In total, 69 staff (predominantly nurses and healthcare attendants) completed the surveys. Medication management and management of pain were the most frequently identified learning needs. Staff were confident in their ability to implement change but de-motivation and powerlessness were substantial factors as only one-third of staff were “ready for change”. Staffing levels, managing risk during change and perceived reluctance in others were common barriers. These results informed an educational intervention to address the specific care context, staff learning needs and barriers to change prior to implementation.     

The challenges of achieving person-centred care in acute hospitals: A qualitative study of people with dementia and their families

Background

Person-centred care has been identified as the ideal approach to caring for people with dementia. Developed in relation to long stay settings, there are challenges to its implementation in acute settings. However, international policy indicates that acute care for people with dementia should be informed by the principles of person-centred care and interventions should be designed to sustain their personhood.

Objectives

Using Kitwood's five dimensions of personhood as an a priori framework, the aim of this paper was to explore the way in which current approaches to care in acute settings had the potential to enhance personhood in older adults with dementia.

Design

Data collected to explore the current experiences of people with dementia, family carers and co-patients (patients sharing the ward with people with mental health problems) during hospitalisation for acute illness were analysed using a dementia framework that described core elements of person centred care for people with dementia.

Settings

Recruitment was from two major hospitals within the East Midlands region of the UK, focusing on patients who were admitted to general medical, health care for older people, and orthopaedic wards.

Participants

Participants were people aged over 70 on the identified acute wards, identified through a screeing process as having possible mental health problems. 34 patients and their relatives were recruited: this analysis focused on the 29 patients with cognitive impairment.

Method

The study involved 72 h of ward-based non-participant observations of care complemented by 30 formal interviews after discharge concerning the experiences of the 29 patients with cognitive impairment. Analysis used the five domains of Kitwood's model of personhood as an a priori framework: identity, inclusion, attachment, comfort and occupation.

Results

While there were examples of good practice, health care professionals in acute settings were not grasping all opportunities to sustain personhood for people with dementia.

Conclusions

There is a need for the concept of person-centred care to be valued at the level of both the individual and the organisation/team for people with dementia to have appropriate care in acute settings.     

The meaning of good and bad care in the community care: older people's lived experiences

In spite of a considerable body of research in the past decades on what does or does not constitute good care for older people, there are still few studies addressing this question in which older people narrate their experiences of being dependent on community care. This study was therefore carried out aiming to explore older people's lived experiences of what good and bad care meant to them, when it was offered by community care services. Nineteen older persons in three Swedish communities participated in the study, which used a phenomenological–hermeneutic approach. Data were collected through unstructured interviews and Colaizzi's framework was utilized in the analysis of the data.
The key theme arising from the analysis was that of being encountered as a human being by caregivers who, through the provision of safe and secure care, provide opportunities for living life as usual. When any of these circumstances are lacking, bad care will be the consequence. As the general intention in society is to ensure good quality of care to older people as well as others, the findings in our study should have important implications for providers of community care for older people.     

Family caregiver perspectives on social relations of elderly residents with dementia in small‐scale versus traditional long‐term care settings in the Netherlands and Belgium

Aims and objectives. To provide insight into family caregiver perspectives on social relations within the ‘caregiving triangle’ between family caregiver, professional caregiver and elderly resident with dementia. Results were compared between traditional versus small‐scale long‐term care settings in the Netherlands and Belgium. Background. Residential dementia care is shifting towards a more holistic and person‐centred approach. Until now, little is known about family caregiver perspectives. Design. A quasi‐experimental longitudinal design. Methods. This study was part of a larger research project focusing on the quality of life of residents with dementia in traditional and small‐scale settings (n = 179). This study focused on family caregivers related to these residents (n = 64). They filled in a questionnaire containing 25 items (baseline and after 12 months) related to their perspectives on the interaction within the ‘caregiving triangle’. Analyses were performed using mixed models and logistic regression. Results. Compared to traditional settings, family caregivers of relatives with dementia living in small‐scale settings had more contact with the professional caregivers, were more satisfied with this contact and felt that staff paid more attention to their feelings as family members. They also reported that staff showed better listening skills towards the residents. Furthermore, compared to those in Belgium, family caregivers in the Netherlands perceived staff to be less hurried and more accepting of help from family and felt that staff more often takes the resident seriously. Conclusion. In the move towards more person‐centred care for residents with dementia, this study finds preliminary evidence for the importance of integrating the family perspective. Relevance to clinical practice. Gaining more insight into the perspectives of family caregivers on the social relations within the ‘caregiving triangle’ may provide knowledge about the importance of the social system surrounding elderly residents with dementia and can provide pointers for future research.     

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.     

Striving for independence: experiences and needs of service users with life limiting conditions

Title.  Striving for independence: experiences and needs of service users with lifelimiting conditions.
Aim.  This paper is a report of a study to explore what service users with a range of life-limiting conditions identify as their key experiences and needs generally and, specifically, from health and social care services.
Background.  Whilst internationally palliative care has a primary focus on service users who have cancer, there is growing evidence that those with non-cancer life-limiting conditions have similar palliative care needs. The literature has mainly been focused on independence, choice and control at an individual level, with wider influences on the maintenance or attainment of independence ignored.
Method.  A participatory approach was used in 2003–2004, with both the researcher and a group of service users working together in all stages of the study. Twenty-five participants in receipt of support from an acute hospital, primary care, social services and a hospice took part. Face-to-face individual interviews and small discussion groups were conducted and data were analysed thematically.
Findings.  Eight different but interconnected themes were identified. Independence/dependence was an overarching theme, with negotiation between independence and dependence being evident across all themes. This theme and the influence of health and social care services on the experience of living with life-limiting conditions are the focus of this paper.
Conclusion.  Palliative care and practitioners should focus on maximizing independence at both the individual and structural levels. How services for those with life-limiting conditions are provided and relationships with health and social care staff can directly impact on an individual's experience of independence, choice and control.     

Perspectives of women with dementia receiving care from their adult daughters.

The caregiving experience within Alzheimer disease is fairly well documented. However, little research has been conducted from the perspective of the person living with dementia. The purpose of this study, part of a larger qualitative investigation of mother-daughter relationships within the care process of dementia, was to elicit the perceptions and experiences of mothers receiving care from their adult daughters. Guided by feminist and life-course perspectives, the researchers conducted in-depth, semi-structured interviews with a diverse sample of 10 community-dwelling women with mild to moderate cognitive impairment. In general, the health perceptions and experiences of the women were shaped by gender and how its meaning is constructed. While mothers reported mostly positive relationships with their daughters, cultural ideologies of individualism and familism manifested in feelings of "grateful guilt." Participants managed their contradictory experiences of receiving care from their daughters by doing care, undemanding care, determining care, and accepting care. The authors recommend changes in practice, policy, and research, with the aim of addressing relevant social determinants of health such as gender and social support, thereby promoting the health and well-being of women with dementia.     

Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts

moyle w., murfield j.e., griffiths s.g. & venturato l. (2012)?Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts. Journal of Advanced Nursing68(10), 2237-2246. ABSTRACT: Aims. This article reports on a study of quality of life of older people with dementia, as assessed by the person with dementia, family carer and care staff. Background. People with dementia can give meaningful assessments of their quality of life, but these often differ from proxy ratings. In understanding this discrepancy, the influence of age, extent of cognitive impairment and activity limitation has been investigated. A lack of conclusive associations between quality of life ratings and these variables indicates a need for further research. Methods. Fifty-eight triads comprising the person with dementia, family carer and member of care staff from four long-term care facilities were surveyed on the Quality of Life-Alzheimer's Disease questionnaire between August and December 2007. Results. There was an important difference in the Quality of Life-Alzheimer's Disease questionnaire total mean scores between groups, with the person with dementia providing the highest ratings. Level of impairment in Activities of Daily Living had an important effect on quality of life ratings, with proxies, particularly care staff, providing lower ratings when there was greater activity limitation. This was not replicated for assessments made by the person with dementia. Age or level of cognitive impairment did not influence any ratings. Conclusion. People with dementia can give assessments of their quality of life. However, discrepancy in ratings, with greater activity limitation affecting proxy ratings but not those made by the person with dementia, indicates the importance of including both self-report and proxy measures in research and care planning.