Quiet please, there's a lady on stage: : Centering the person with dementia in life story narrative

This paper is drawn from a larger study based on traditional qualitative thematic methods, which explored the use of secondary biographical stories as a strategy in conversation with an older person who has dementia. The aim of this paper is to re-examine the data to facilitate further discussion in gerontology about the ways in which the ideals of Kitwood's (1997) personhood and narrative inquiry can be used keep life story of the person with dementia intact. By drawing upon narrative writers such as Mishler (1986), Gee (1991), Ramanathan (1995) and Riessman (2004, 2007), we describe a methodological approach utilising structural and thematic forms of narrative analysis to keep the person with dementia ‘centre stage’ in their own life story narrative. This paper demonstrates that by integrating a person-centred approach to interpretative and structural narrative analysis, people living with dementia can be the centre of their own story and communicate with their community what is important and why it is worth telling.     

Person-centred communication in dementia care: a qualitative study of the use of the SPECAL® method by care workers in the UK

Abstract

Communication has featured prominently in person-centred dementia care research, but no consensus has been reached on which communication techniques are most helpful in supporting person-centred care. This qualitative study explored communication techniques used by domiciliary and community care workers of people with dementia in the UK. Care workers trained in the SPECAL® method (Specialised Early Care for Alzheimer’s) were invited to semi-structured interviews. The data were analysed using a constructivist grounded theory approach. Themes from the data were discussed as a potential basis for developing a substantive theory. The care workers contributed to client well-being through modifying their communication techniques, expressing a protective, empathetic and reassuring approach, underpinned by reflection. Clients exhibited greater well-being and less anxious behaviour. The care workers’ use of SPECAL® communication methods, supported by supervision, may provide a unique combination of techniques, contributing to the development of caring relationships, to care worker and client well-being, and to the maintenance of client personhood.     

Kitwood's thought and relational social work

Tom Kitwood is a key figure in the development of thought about dementia, but generally no references are made to his work outside of elderly care. This article argues that Kitwood's thought has much to offer to all the professional caregivers, regardless of the users’ category they are caring for, and to the broader field of professional social work. Some key themes from the writings of Kitwood are examined, namely the critique of the ‘standard paradigm’; the conception of malignant social psychology; the respect for otherness in the positive person work; the person with dementia as a resource for reciprocity processes; the new culture of dementia. For each of these issues similarities between Kitwood's approach and relational social work are identified. Relational social work considers the helping process and the well-being development as co-constructions, in which the contributions not only by the helper (or the caregiver, or the social worker), but also by the helpee (or by the care recipient, or by the user) are essential: both at the same time are helped and helpers, and both are empowered by this. This idea—of great value to all social work fields—is remarkably close to the Kitwood's thought about the dementia care.     

Exploring the Climate for Overweight and Obese Students in a Student Health Setting

Attitudes and beliefs of health care providers, in conjunction with a nonthreatening physical environment, are important components in establishing a constructive and supportive climate for care of overweight and obese students. Objective: The authors explored providers' attitudes about obesity and assessed the physical environment in a student health clinic to identify areas that may be detrimental to the care of overweight and obese students. Participants: Eighteen direct care providers participated in the project. Methods: The authors conducted focus groups with direct care providers and assessed their experiences and perceived challenges in working with overweight and obese students. The authors also conducted a walk-through assessment of the physical environment. Results: Direct care providers expressed discomfort in deciding how and when to discuss weight with students. The authors found that elements of the physical environment could present barriers to care for overweight and obese students. Conclusions: The authors make recommendations for improving the health care climate for overweight and obese students.     

Conversation takes two: understanding interactions with people with dementia

The term ‘person-centred’ underpins dementia policy and approaches to support people with dementia. However, ‘person-centredness’ remains hazy, and words and definitions matter greatly when they are at the heart of defining what happens in people’s lives. Drawing on data from an ongoing project, this article suggests that conversations which include a person with dementia can elucidate how ‘relational’ support is enacted in practice and the implications this can have on our understanding of ‘person-centredness’. Identities are shaped in part through how we speak to people, and how they speak to us. This is particularly pertinent to the aims of ‘person-centredness’. A conversation analytic approach to dementia support may therefore move us towards seeing ‘personhood’ as jointly constructed and reconstructed through interactions with others.     

Toward a political model of dementia: Power as compassionate care

During the last twenty years, a person-centered model of dementia has effectively challenged the biomedical model and has revolutionized caregiving practices to be more compassionate. Yet this focus on personhood has not dislodged the biomedical model from its influential place within law, and has instead reinforced the importance of legal personhood—a concept that is dependent on mental capacity. This article is an attempt to shift the discourse away from personhood to power. It uses Rollo May's theory of power as a lens through which to critique the biomedical, social constructionist, and phenomenological models of dementia, and then builds on political approaches to dementia to argue the merits of a political model of dementia based on compassionate power.     

Exploring personhood in dining experiences of residents with dementia in long-term care facilities

Despite the shift toward using person-centered approaches in dementia care, the relevance and applicability of the concept “personhood” remains unclear in everyday practice and activities, such as mealtime experience for residents with dementia. Based on a qualitative study, this paper presents emergent themes at mealtimes that support or undermine personhood of twenty residents with dementia in two long-term care facilities. Methods of data collection included conversational interviews with residents with dementia, participant observations, focus groups with staff and examination of available documents. Data analysis identified eight themes: (1) outpacing/relaxed pace, (2) withholding/holding, (3) stimulation, (4) disrespect/respect, (5) invalidation/validation, (6) distancing/connecting, (7) disempowerment/empowerment, and (8) ignoring/inclusion. These findings raised questions about current practice and identified areas for improvement. Although staff approaches seemed to have the greatest impact on residents' experiences, the physical environment and organizational milieu were also responsible for hindering and facilitating staff to provide the best possible care and interaction.     

The Self-Care Center for Cuts: A Model for Student Development

Abstract

We conducted a study to determine whether an intervention using self-care information would change college students' attitudes and beliefs concerning personal responsibility and involvement in their own health care. Individuals entering a student health service were randomly assigned to a treatment or control group. Members of the treatment group (n = 187) received the intervention and completed the survey instrument. Members of the control group (n = 204) completed the survey instrument only. The intervention consisted of one page of general information about the benefits to individuals of taking responsibility for their own health and a booklet containing excerpts from a consumer-oriented health care book. The survey instrument was composed of a measure of attitudes toward information and behavioral involvement in health care and a measure of beliefs regarding control over one's health. Results indicated that the intervention was able to change the treatment group's attitudes regarding active participation in health care. The treatment group's responses also reflected less belief that health was outside of the individual's control. The study showed that a positive change in health-related attitudes and beliefs can result from a relatively uncomplicated informational intervention.     

An Examination of Employed Mothers' Work-Family Narratives and Perceptions of Husbands' Support

Abstract

In this study I examine the role of husbands' supportive communication practices in serving to mediate some of the common problems that are often experienced by employed mothers. The problems that are examined in this study are work-family conflict, stress, inequity in the division of labor, and double bind beliefs. Employed mothers completed open-ended narratives of recent work-family conflicts. Wives' perceptions of their husbands' supportive communication practices were examined in the narratives. Either the presence or absence of husbands' concern was related to women's perception of inequity and work-family conflict, while husbands' participation was related to double bind beliefs. Collectively, the husbands' support practices of minimizing child care concerns, avoidance of housework, expressions of concern about housework, and participation in child care accounted for 15% of the variance in women's marital satisfaction.     

Dementia: challenges for social work education in Europe

ABSTRACT

Dementia has been identified as a global challenge across the spectrum of health and social care (World Health Organisation. (2012) Dementia: A public health priority. Geneva: WHO). This paper will explore the implications of this for social work education and the challenges it poses. There is a lack of this focus on social work with older people and people with dementia (pwd) in social work education. Based on calls for an infusion of content on ageing and dementia in social work curricula, paper proposes that we should adopt a person-centred philosophy alongside gerontological social work competencies to achieve this. The specific aim of this paper, therefore, is to explore how we can use these ideas as teaching tools to engage social work students in the discourse on dementia and to develop appropriate skills to work with pwd, their families and carers.     

Family preservation and child protection: The reality of Children's Court decision-making

Abstract

Ainsworth and Maluccio (Australian Social Work, December 1998) drew attention to the increased use of kinship care for children who need care away from their parents. This paper discusses the aim of family preservation, on which kinship care is predicated, and the challenges for legal decision-makers to meet this aim when children are before the courts in need of care and protection. It draws from findings of a study of magistrates' decision-making in child protection cases (Sheehan 1999). The paper provides examples of family situations that typically confront the Children's Court in Victoria and the court's response to them as it attempts to balance the importance of family ties and the reality of risk for a child; a reality that challenges valued beliefs about families and their ability to always care for their children.     

Why Are Some People's Needs Unmet?

Australia has legislation that states that 'people with disabilities have the same rights as other members of society to services', yet nearly one-third of all people with spinal injuries have their need for community services unmet. If all people have the same rights, why are some people's needs unmet? How equitable is the distribution of services? This study challenges service providers' beliefs that decisions about the provision and distribution of services are made objectively and equitably. To obtain needed services, people had to demonstrate their worthiness by conforming to providers' stereotype-based expectations of the disabled, based in entrenched philosophies. Service structures reinforce these disabling ideologies Service provision must thus undergo fundamental philosophical and structural change in order to meet community service needs.     

Long-Term Care Preferences Among Older Adults: A Moving Target?

ABSTRACT

This study investigates long-term care preferences across three hypothetical scenarios and over one year of time among a sample of disabled older women receiving informal care (n?=?420). Unpaid or paid help in one's home was preferred, given scenarios of instrumental activities of daily living (IADL) and activities of daily living (ADL) needs; nursing home care was most preferred for dementia care. While aggregate preferences for long-term care were relatively stable, there was considerable fluctuation in individuals' preferences over time, with just 52.5%, 44.4%, and 44.6% of participants retaining their initial first choice across IADL, ADL, and dementia scenarios, respectively. Implications of study findings are discussed.     

Burnout: The end of the line or a signal for change?

Abstract

This paper is an attempt to explore my own experiences and professional choices through an examination of the concept of burnout in social work.

I have set out to use some aspects of the research and theory about the concept of burnout and relate them to the particular circumstances of my case. After a brief introduction and examination of what burnout is, I divide the paper into three sections dealing with the social and historical factors in burnout, the individual factors and the organizational factors.

I have attempted to show a connecting thread throughout, linking the various factors through the theme of disillusionment. It appears that the problem of dealing with omnipotence and accepting reality are as germane to this topic as they are to the individual's development. I have also attempted to draw an analogy between the factors that may aid this developmental task and organizational factors which can contribute to or help prevent burnout.     

Ethnic Variations in Dementia Caregiving Experiences

Abstract

The proportion of minority elders with dementia in the United States is projected to rise substantially. This study elicited perceptions of the caregiving experience from informal caregivers of persons with dementia, across different ethnicities. Six focus groups with 47 dementia caregivers of African-American, Chinese-American, Euro-American, and Hispanic-American ethnicities were conducted. Caregiving roles, concern about the person with dementia, and unmet information and resource needs were expressed similarly. However, perspectives differed across ethnic groups on stigma surrounding dementia, benefits of caregiving, spirituality/religion to ease caregiving burden, and language barriers and discrimination. Findings suggest that interventions to reduce disparities in dementia care quality need to address ethnic variations in caregiving experiences.     

Running out of time: A qualitative investigation of homeless men’s access to health services

Abstract

This study examined health beliefs and health care utilisation among 20 homeless men in Liverpool, through the voices of homeless men themselves. Using semi-structured interviews and framework analysis, narratives highlighted the interplay between the limiting structures of the health care system and an individual's ability to know how to seek out health care in order to improve their own health. Specifically, we found that individual agency was contingent on the availability of a set of minimum resources, to which homeless men did not have access. These findings have important implications in terms of practical policy recommendations for improving health care utilisation among the homeless.     

Contact with Outdoor Greenery Can Support Competence Among People with Dementia

SUMMARY

Dementia disorders are increasing among populations all over the world due to growing life expectancy. Since dementia widely affects cognition, especially short-term memory and orientation, people with dementia are more dependent on provisions from their environment to act successfully than those without dementia. Green environments have been associated with reduced autonomic arousal leading to stress recovery and improved affective state. In this paper we introduce theories and empirical studies about healing and green environment, and present our findings on the impact of plants, and of seeing and being outdoors on the well-being of people with dementia in day care and in residential care. The first study is based on a survey of 65 nursing staff from ten residential care homes. The second study involved 123 people with dementia from two day care units and six residential care units.     

Florida's Efforts to Improve Quality of Nursing Home Care Through Nurse Staffing Standards,Regulation, and Medicaid Reimbursement

Between 1999 and 2007, Florida implemented two initiatives combining legislative, regulatory, and reimbursement strategies to increase nurse staffing levels in nursing homes to improve quality of care. Despite a $40 million incentive package allocated for direct-care staffing, per-resident-day staffing increased only after legislative requirements mandated minimum nursing hours per resident day. Total Medicaid expenditures grew by $1.1 billion over the 8 years; per diem rates increased 65% to reimburse providers' costs. Registered nurses' hours decreased, while licensed nurses' and paraprofessionals' hours increased. This article describes the impact of staffing policy changes, includes stakeholders' views about approaches to achieve quality outcomes, and documents state policy implementation efforts. Seven lessons from the implementation of state nurse staffing standards to improve quality of care outcomes are also presented.