What constitutes good care for people with dementia?

Person-centred care for people with dementia is an aspiration of both family and professional carers, but what constitutes person-centred care and how it can be achieved is less clear. This article describes a Swedish study in which in-depth interviews were completed with both family and professional carers of people with dementia with the purpose of exploring what they considered to be "best care". Important areas of similarity and difference were identified and the results suggest that both groups of carers need to work closely together if person-centred care is to become a reality.     

The use of life story work with people with dementia to enhance person-centred care

mckeown j., clarke a., ingleton c., ryan t. & repper j. (2010) The use of life story work with people with dementia to enhance person-centred care. International Journal of Older People Nursing 5 , 148–158 Background. Person-centred care has been linked with quality of care but difficulties remain in person-centred care being implemented in care practice. This study explores the use of life story work to enhance person-centred care with people with dementia. Aims and objectives. The study investigates how life story work is: understood and developed in practice; experienced by all participants and affects the delivery and outcomes of care. Design and methods. The experience of older people with dementia, family carers and care staff in using life story work was explored within an NHS Health and Social Care Trust. A multiple case study design was adopted within a constructivist approach. Semi-structured interviews, observation, conversations were employed. Findings. Life story work has the potential to: enable care staff to see the person behind the patient; allow family carers to uphold their relatives’ personhood; enable the voice of the person with dementia to be heard, verbally and non-verbally; be enjoyable for all concerned and enable the person with dementia to feel proud about themselves and their lives. Conclusion and implications for practice. Life story work has the potential to enhance person-centred care for older people with dementia and their families. Taking a practice development approach ensures that life story work can be implemented sensitively and is sustained in practice.     

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.     

Sliding doors: Did drama-based inter-professional education improve the tensions round person-centred nursing and social care delivery for people with dementia: A mixed method exploratory study

This educational intervention takes place when the population of older people with dementia is increasing. Health and Social care professionals must work jointly in increasingly complex contexts. Negative attitudes towards older people are cited as a contributor to poor care delivery, including the use of dismissive and/or patronising language, failing to meet fundamental needs and afford choice. ‘Sliding Doors to Personal Futures’ is a joint, drama-based, educational initiative between NHS Education Scotland and the Scottish Social Services Council, delivered using interprofessional education (IPE) towards encouraging person-centred health and social care.This paper considers whether ‘Sliding Doors’ had an impact on social work and nursing students' attitudes to older people, person-centred care and interprofessional collaboration. Two groups of third year students were studied; one from nursing and one from social work. A mixed methods approach was taken and attitudes and attitudinal shifts measured and discussed.Quantitative results demonstrated that social work students made positive attitudinal shifts in some questionnaire items and collectively the social work students were more person-centred than nursing students in their care approaches. The qualitative data however, drawn from focus groups, illuminated these results and highlighted the link between the ability for a professional to be person-centred and the conceptual view of risk within the particular profession. Risk acceptance, the theoretical position of social work, may facilitate person-centred care, whereas the perceived risk-averse nature of the nursing profession may inhibit it. Students' attempts to understand the quantitative results, without understanding the restrictions and parameters of each other's profession, led them to revert to stereotypes and negative views of each other as practitioners.The paper concludes that there is an important difference between nurses' and social workers' frames of reference. It is suggested that IPE in its current form will not impact positively on outcomes for older people, unless both professions can openly acknowledge the reality of their professional contexts and develop an understanding of each other's professional restrictions, opportunities and aspirations.     

Supporting families of patients with dementia at end-of-life in hospital

IntroductionThere are barriers to implementing person-and family-centred end-of-life care for people with dementia in hospitals. Nursing care for people with dementia is enhanced through family involvement. However, families report unmet needs during admissions contributing to distress and dissatisfaction. Furthermore, little is known about families’ needs during end-of-life care for people with dementia in hospital.AimThis study examined perceptions of interpersonal care during end-of-life for patients with dementia.MethodsThis research used a qualitative approach framed through a social constructionist and complex systems theoretical frameworks. Hospital clinicians (n = 20) and bereaved family members (n = 12) of deceased patients with dementia participated in semi-structured interviews focussing on recent end-of-life care experiences.FindingsAn overarching theme of maintaining connections highlights the need to support patient and family bonds at end-of-life. Although clinicians often presumed families had experienced the social loss of a relative due to dementia, most families described continued bonds. Despite clinicians’ insights into caregiver grief, several families reported unmet bereavement support needs. Clinicians and families sought to personalise end-of-life through affirming signs of patients’ presence, working collaboratively to achieve comfort, personalising basic care interventions and offering gestures of hospitality.ConclusionEnd-of-life care for people with dementia and their families is improved when clinicians personalise patient care interventions using creative and simple strategies. Families feel comforted through humanistic care that acknowledges their unique relationship with the patient. However, it is vital to integrate grief and loss psychoeducation during end-of-life care to address families unmet bereavement needs following patient death.     

Changing attitudes in dementia care and the role of nurses

Dementia care has been seen as a low priority, but with an estimated 700,000 people in the UK with dementia and an ageing population this is changing. The Alzheimer's Society will be holding events this week to raise awareness of dementia, sending a strong message to policy makers that dementia is a serious health issue. Nurses have also become active in fighting the old degenerative model of dementia and promoting the concept of person-centred care.     

End-of-life care for older adults with dementia living in group homes in Japan

Aim:  The aim of this study was to elucidate the components of end-of-life care provided to older adults with dementia who live in group homes (GHs) in Japan.
Introduction:  The number of GHs in Japan is rapidly increasing. Although GHs were originally not established to care for elderly people with advanced-stage dementia, many residents remain in the GH even after their stage of dementia advances; thus, end-of-life care is required.
Methods:  Interviews were conducted with seven GH administrators on their experience in providing end-of-life care to their residents. The constant comparative approach was used for data collection and analysis.
Findings:  Four themes emerged as essential components of end-of-life care in the GH setting: (i) maintaining a familiar lifestyle; (ii) minimizing physical and mental discomfort; (iii) proactively utilizing desirable medical care; and (iv) collaborating with family members.
Conclusion:  The combination of the four components seems to be a unique characteristic of end-of-life care in GHs in Japan. These findings may be used to establish a framework for end-of-life care at GHs.     

Knowledge,facilitators and barriers to the practice of person-centred care in aged care workers: a qualitative study

The current study describes aged care workers' interpretation of the concept of person-centred care; and identifies the barriers that exist to impede its practice, and the facilitators that encourage person-centred care practice. Data were collected from interviews with aged care workers from two residential aged care facilities providing both high and low care for residents with and without physical and psychological issues based in Australia. Data were analysed to identify and explore categories of meaning for barriers and facilitators. Analysis is grounded in Brooker's VIPS framework for person-centred dementia care which is utilised as a comparative tool for analysing participants' understanding of person-centred care. Findings revealed that aged care workers have a reasonable but incomplete understanding of person-centred care. Insufficient time and residents' dementia behaviours acted as barriers to care workers' provision of person-centred care. Teamwork was found to facilitate person-centred care by increasing instrumental and relationship resources     

Interventions for confusion and dementia. 5: Changing cultures

Previous articles in this series (Vol 7(15): 891-94; Vol 7(17): 1018-20; Vol 7(19): 1145-49; Vol 7(20): 1247-50) have explored the promotion of quality of life for people with dementia and how this can be achieved through existing interventions. This final article moves from discussing specific interventions to cover wider issues around healthcare beliefs and values. A brief historical overview of dementia care is given, outlining the inherited structures and values. Much valuable work has been carried out by the Bradford Dementia Group, who has described changes in dementia care as moving from an 'old' to a 'new' culture. This 'new culture', offering a comprehensive person-centred approach to holistic care, is explored with reference to the work of Kitwood, who has done much to promote quality of life for people suffering from dementia.     

Promoting positive approaches to dementia care in nursing

This article provides an overview of factors relevant to dementia care today. The number of people experiencing dementia is increasing and dementia is at the forefront of health policy. The evidence base for person-centred approaches and interventions in dementia is expanding and nurses are central to implementing these across care settings. This is an exciting and challenging time for dementia care and nursing has a major role in leading and developing these changes in practice. The article discusses the importance of wellbeing and the Mental Capacity Act in assessing and caring for people with dementia. Psychosocial and pharmacological approaches to dementia care are described and the need to support carers of people with dementia is emphasised.     

Person-centred care for people with dementia: a quality audit approach

This paper addresses the concept of person-centred care for people with dementia by consideration of an audit process using dementia care mapping as the audit tool. It is argued that this tool is best for identifying the lived experiences of the people in receipt of care. As a result it is able to identify the overall culture of care and its level of 'person-centred' approach. The audit was conducted on 12 units, half of which were day units and the others catering for inpatients. Five patients were mapped on each day for a 4-day period. The results give some idea of the quality of care and identify where improvement is necessary. Scores such as well-being values and the Dementia Care Index give clear signposts to the level of person-centred care and highlight where staff development is necessary. Recommendations are given to aid on-going planning.     

Exploring the usefulness of a recovery-based approach to dementia care nursing

Exploring new approaches to dementia care nursing is vital to enable services to cope with the expected rise in demand for healthcare due to an ageing population. A comparison between the current person-centred care approach in aged care and recovery-based approach that underpins mental health nursing was reviewed in the literature to determine which is more useful to dementia care nursing. The recovery model is the conceptual framework that underlies the recovery-based approach. It broadens the current person-centred care approach through the fostering of hope, facilitative rather than directive care, and enhances autonomy. This promotes positive outcomes for older people with dementia through empowerment to make choices in the way they wish to live within the community. This essay proposes that the recovery-based approach is more useful to dementia care nursing than person-centred models.     

A survey of staff attitudes and responses to people with dementia who are aggressive in residential care settings

Aggression is reportedly common among older people with dementia in residential care. The attitudes of staff in care homes and strategies they use are under researched. Theoretical models that may be used to both understand and respond to such behaviour exist. They are the standard and person-centred paradigms. The aim of this study was to explore the views of nursing staff about aggressive behaviour in people with dementia and strategies used in practice. A survey of the attitudes of staff in six dementia care units using the Management of Aggression in People with Dementia Attitude Questionnaire was conducted including an audit of aggressive incidents using the Staff Observation Aggression Scale-Revised over a 3-month period. Staff expressed views reflective of a person-centred as opposed to standard paradigm. They viewed aggressive behaviour by people with dementia as deriving from the environment, situation or interactions with others. Participants strongly supported interpersonal means of responding to aggression, the moderate use of medication, and were largely opposed to physical restraint. Aggressive incidents were managed using less intrusive strategies such as distraction and de-escalation. Responses to aggressive behaviour, while pragmatic, were largely underpinned by a person-centred ethic as reflected in the attitudes expressed by staff.     

Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff

Background: The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life. The role of the health care team is pivotal if people with dementia are to benefit from the transition to palliative care. Aim: This paper reports on qualitative research conducted in the UK that sought to explore the experiences of health care practitioners working in palliative care and sought to establish the issues relating to end-of-life care for people with dementia. Design: Eight focus groups and four individual interviews were held. Data were analysed using a thematic approach. Setting/participants: The study included palliative care practitioners (n = 58) including medical, nursing and allied health professionals. Participants were recruited from acute hospitals, general practice, hospices and specialist palliative care units in the UK. Results: Four themes were identified: Making the transition; Competence challenged; 'The long view' and Working together. Whilst there exists good practice in this area, the barriers to timely and appropriate transitions to palliative care for people with dementia and their families continue to exist. The paper concludes with recommendations for policy and practice development.     

Aggressive behaviour by people with dementia in residential care settings: a review

This paper considers the phenomenon of aggressive behaviour perpetrated by people with dementia in residential care settings. Aggressive behaviour is defined in the context of people with dementia, and the problem of ascertaining the incidence of aggression among people with dementia is discussed. The emotional impact of assaults on nurses and other professionals is highlighted, and differing perspectives on the causation of aggressive behaviour are considered. Management strategies derived from the physical/pharmacological; environment management; behaviour modification and person-centred approaches are reviewed. Our conclusion is that while certain strategies appear to reflect good and common sense practice, in particular those deriving from the person-centred approach, there is no clear research evidence for the general effectiveness of any one management approach, and each has drawbacks of a practical or ethical nature. There is also little empirical information about how professional carers actually manage aggressive behaviour in practice.     

Using life story work to enhance care

Life story work has been promoted as a tool to enhance the care provided to older people, particularly those with dementia. The benefits for individuals, families and/or friends and for staff include improving understanding of the individual, promoting relationships and assisting in the delivery of person-centred care. However, professionals often experience difficulties using life story work. This article considers a range of life story tools and advice on gathering information about a person. It highlights the importance of leadership and developing positive cultures to ensure that life story work can be effectively sustained.     

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.     

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.     

The care of older people with dementia in acute hospitals

cowdell f. (2010) The care of older people with dementia in acute hospitals. International Journal of Older People Nursing 5 , 83–92. Aim. To explore the experiences of patients and nursing staff of the care received by older people with dementia in acute hospitals. Background. The prevalence of dementia is steadily increasing as is the number of people with the condition requiring acute hospital care. Significant concerns about the quality of this care have been raised. There is a paucity of knowledge about the views of such care from the perspectives of people with dementia and nurses. Method. An ethnographic approach was used and data were collected thorough observation and interviews in one acute hospital in the United Kingdom. Findings. Findings suggest that care for older people with dementia in acute hospitals is not always optimum although there are clear exceptions. Generally, people with dementia found the delivery of care and the experience of being in hospital distressing as they did not know what was happening and they were often ignored. Nurses strive to give good care but do not always achieve this. Conclusion. Bourdieu’s Model of Practice assists in explaining why care is as it is. There is a clear need to improve current practice. Relevance to clinical practice. It is imperative that innovative methods of developing practice are implemented and evaluated. Education alone will not lead to sustained changes in practice. Further research into this subject needs to be undertaken.     

Using drama to improve person-centred dementia care

kontos p.c., mitchell g.j., mistry b. & ballon b. (2010) Using drama to improve person-centred dementia care. International Journal of Older People Nursing 5 , 159–168 Aims and objectives. We implemented a 12-week drama-based educational intervention to introduce to dementia practitioners person-centred care that emphasizes the notion of embodied selfhood (defined as non-verbal self-expression). Background. Person-centred dementia care guidelines emphasize the assessment of individual needs, and where appropriate, the use of non-pharmacological interventions before resorting to pharmacological management. However, dementia care is not consistent with these guidelines suggesting conceptual limitations and reliance on passive knowledge translation strategies. Design and methods. Focus groups and semi-structured interviews with practitioners (n = 24) in two nursing homes in central Canada were undertaken to assess the effectiveness of the drama-based components of the intervention. Results. Our findings suggest that drama was effective as an educational modality, and helped implement the person-centred approach into practice. Significant practice outcomes included: new awareness that residents’ body movements and dispositions can convey meaning; seeking biographical information from families; increased time efficiency; and supporting residents’ independence. Conclusions. Our findings make an important contribution to person-centred dementia care by broadening the notion of personhood, and by facilitating implementation using drama. Implications for practice. As an enhancement of person-centred care, the support of embodied selfhood may significantly improve residents’ quality of life, quality of care, and practitioners’ care-giving experience.