Audiences must be critical of film representations of the aged woman living with Alzheimer's disease and of dangerous reinscriptions of stereotypical equations about ageing as deterioration. This paper analyses the representation and decline of the aged woman through the different voices of Iris Murdoch in Richard Eyre's film Iris (2001). Key vocal scenes are considered: On-screen encounters between young and aged Iris, vocal representations of dementia symptoms and silencing Iris as her disease progresses. Further, Iris' recurrent unaccompanied song, "The Lark in the Clear Air," compels audiences to "see" Iris with their ears more than with their eyes, exemplifying the representational power of sound in film. This paper is an appeal for increased debate about sonic representations of aged women, ageing and Alzheimer's disease and dementia in film. The significance of audiences' critical awareness and understanding about the social implications of these representations is discussed.
Specialist community dementia nurses are an appropriate sample to investigate longer-term decision-making and end-of-life care planning. Implemented in 2007, the Mental Capacity Act (MCA) provides opportunities for assisting with planning and making decisions on others' behalf, and may be expected to be entrenched within clinical practice. We conducted follow-up qualitative interviews with 15 community-based dementia nurses to detect changes and developments in views and practices of the MCA. Thematic analysis identified recurrent themes and developed into a coding framework. At Time2, there was greater awareness of general and specific principles of MCA and greater confidence in using it. There was greater involvement in discussing planning finances, less so in end-of-life-care. Some participants were concerned about lack of understanding amongst other professionals and felt more public awareness was required. Supplementary training, opportunities for mentoring and supervision may develop greater confidence among dementia practitioners and support their roles in informing and advising people with dementia and carers.
Use of technology to structure and support the daily activities of the residents in a small-scale group accommodation (SSGA) for dementia is a new innovation in the Netherlands. This paper presents the process of development of this new way of structuring activities and the findings of a pilot study looking at the experiences of using this device in people with dementia.
A qualitative method was chosen, data were collected using individual interviews with the residents ( n = 6), focus groups interviews with informal carers ( n = 5) and members of staff ( n = 6). Data were analysed using Ritchie & Spencer’s framework (1994) .
Three main themes emerged: issues regarding the implementation, needs for further development and the learning experiences acquired during the development. The majority of the residents were happy with the use and function of the memory aid. However, the occurrence of installation errors, limited ease of use and a lack of knowledge regarding the function and use of the memory aid were issues that prevented a successful implementation. Findings highlighted shared views about ways of improving through adaptation of the software program and additional technological applications; internet connectivity, improving its accessibility by using a remote control and adding videos and photos.
Lessons are learned about the use and transferability of this innovation in people with dementia and other vulnerable target groups including those with learning disabilities as well as its limitation and the needs for further development.
Research is limited on end-of-life treatment decisions made by African American family caregivers. In a pilot study, we examined the feasibility of implementing an advance care treatment plan (ACT-Plan), a group-based education intervention, with African American dementia caregivers. Theoretically based, the ACT-Plan included strategies to enhance knowledge, self-efficacy, and behavioral skills to make end-of-life treatment plans in advance. Cardiopulmonary resuscitation, mechanical ventilation, and tube feeding were end-of-life treatments discussed in the ACT-Plan. In a four-week pre/posttest two-group design at urban adult day care centers, 68 caregivers were assigned to the ACT-Plan or attention-control health promotion conditions. Findings strongly suggest that the ACT-Plan intervention is feasible and appropriate for African American caregivers. Self-efficacy and knowledge about dementia, cardiopulmonary resuscitation, mechanical ventilation, and tube feeding increased for ACT-Plan participants but not for the attention-control. More ACT-Plan than attention-control participants developed advance care plans for demented relatives. Findings warrant a randomized efficacy trial.
Professionals working with people with dementia need to develop new activities that occupy patients and increase positive emotions. Dementia care mapping is a reliable method of measuring well-being during activities with people with dementia. The iPad has many applications that may be suitable as a group activity for persons with dementia. Six people with dementia took part in two traditional and two iPad activities over two days. Well-being was recorded using dementia care mapping. Subjects displayed similar or better levels of well-being during iPad activities than traditional activities. A larger variation of behaviors was seen during iPad activities than traditional activities. With detailed planning using a person-centred care approach, iPad group activity has the potential to be as effective and engaging as other conventional activities in achieving well-being.
This paper shares outcomes from the evaluation of a community project where comedy activities were introduced into a day centre for older people with dementia as a result of a partnership between the day centre, a local university and a specialist comedy provider. Four workshops were provided using improvisatory activities and comedy, as a medium to engage older people in reflecting on aspects of their care environment. The main output resulted in a 30 minute 'mockumentary' of the 'Her Majesty the Queen' visiting the day centre, in the form of a digital reusable learning object to be used by social work and mental health professionals. The evaluation demonstrated some additional outcomes for those involved and highlighted the benefits of laughter and fun in promoting a positive climate.
Apathy is one of the most frequent and early symptoms of dementia. Because apathy is characterised by lack of initiative and motivation, it leads to considerable burden being placed on carers to ensure that the person living with dementia has a reasonable quality of life. The aim of this study was to investigate the relationship between apathy and participation in therapeutic activities for older people with dementia living in nursing homes. Ninety residents were recruited into the study, and apathy was measured by nursing home staff using the Apathy Evaluation Scale Clinician version. Staff also compiled data on each resident's involvement in therapeutic activities. Among this sample, the mean age was 84.8 years, and mean length of stay in the nursing home was 1.8 years. The mean apathy score was 50.4, indicating that on average the residents had a moderate level of apathy. Overall, residents participated in six activities per week and those residents who were involved in the most activities had the lowest levels of apathy. This paper provides evidence that residents involved in therapeutic activities have lower levels of apathy. Further research should be conducted on the direction of causality, whether apathy levels can be changed through participation in therapeutic activities, the relationship between dementia severity and modifiability of apathy, and the intensity of therapeutic activities required to maintain functioning.
Although generativity is used as a central cultural construct within life course theory to illustrate how older persons create interpersonal ties, it is also tied to key concepts in social exchange theory since generative acts can provide a way for achieving more equity in intergenerational power relationships. Without opportunities for older adults to invest themselves in younger generations, they may no longer feel needed within their family or community. In this article, we discuss the relationship of generativity and dementia through the generative activities of older persons with cognitive decline. Field notes from 8 months of research in a dementia-care setting as well as interviews with 20 residents were thematically analyzed to identify: (a) generative acts among people with dementia; (b) residents' expressions regarding giving to others; and (c) barriers to generativity. Examining generativity among people with dementia requires that one considers the subjective experience of the condition and understands that many social behaviors remain intact irrespective of any quantified cognitive loss (captured here through the use of case examples).
Successful implementation is a vital precondition for investigating the outcome of care innovation. This study concerned the evaluation of the implementation of integrated emotion-oriented care (IEOC) in psychogeriatric nursing home wards. The main question was whether the trained caregivers actually applied the knowledge and techniques of IEOC during their daily work.
The study was conducted within the framework of a randomized clinical trial into the effectiveness of IEOC in 16 wards. Preceding the experimental period, staff from 16 wards were educated and trained to work with a standardized care plan, resulting in a similar level of quality of care at the start of the trial. On the experimental wards IEOC was then implemented by training on the job in addition to training courses for personnel. To examine the implementation effectiveness, a self-report questionnaire, 'Emotion-oriented Skills in the Interaction with Elderly People with Dementia', was administered at baseline and after 7 months to a sample of caregivers from the experimental and the control wards. In addition, participant observation was conducted on four experimental and four control wards, and time spent by care personnel on different type of care tasks was registered.
The implementation of IEOC resulted in increased emotion-oriented skills and more knowledge of the residents among the caregivers. Providing IEOC was not more time consuming for the caregivers than providing usual care.
This study shows that the implementation of IEOC was effective. It is recommended that in intervention studies the correct application of a new intervention or care approach is examined before jumping to conclusions about the effectiveness of the intervention or care approach itself.
Admission to hospital has been found to have a negative impact on people with dementia. The Scottish Dementia Champions programme was developed to prepare health and social service Dementia Champions working in acute settings as Change Agents. The programme was initially delivered to a cohort of 100 health professionals via blended learning, and comprised five study days, a half day spent in a local community setting, and e-learning. In order to complete the programme and graduate, participants were required to complete and submit reports relating to three work-based activities.
The evaluation of the project adopted a two-pronged approach: Impact on programme participants was assessed by scores derived from the Approaches to Dementia Questionnaire (ADQ) ( Lintern, 1996 ) completed at Study Days 1 and 5, and analysis of qualitative data derived from the three written assignments. Participants were asked to evaluate course materials and input for each of the five study days, as well as satisfaction with delivery.
Analysis of data derived from the ADQ and 100 reflective reports of the community experience indicate that participants’ perceptions of people with dementia shifted significantly during the Programme. Participants identified a range of issues which should be addressed with a view to improving the experiences of people with dementia in acute settings, and put in place actions to bring about change. The format of the programme provided a cost effective means to prepare NHS and Social Service Dementia Champions as Change Agents for practice within a relatively short period of time, and would be transferrable to other staff groups as well as different organisational structures in other countries.
The outcomes for those with dementia admitted to acute hospitals are often poor, with higher mortality, increased risk of institutionalisation and longer length of stay. The aim of this study was to examine the impact of dementia on length of stay and the associated cost of care in acute hospitals in Ireland. People with a recorded diagnosis of dementia were found to have a significantly longer length of stay than those with no recorded dementia. Multiplying the excess length of stay by the number of dementia-related admissions gave an estimate of 246,908 additional hospital days per annum due to dementia at an associated additional annual cost of over €199 million. Improving the experience of those with dementia in acute hospitals will likely lead to cost savings for the health service; however, it will require a number of measures including: earlier diagnosis, training for medical professionals and improvements in the built environment.
Informal caregiving for a person with dementia often takes place within a health care triad, whose members include the caregiver, the care-recipient and the health care-professional. The aim of the current study was to explore how the members work together with this triadic context. Six spousal caregiving dyads and the three Admiral Nurses who worked with the couples were interviewed. Transcripts of these interviews were analysed to form six case studies, each containing the perspectives of the three members of the triad. The processes emerging in these case studies were encompassed under an overarching dynamic process of 'negotiating the balance'. This describes the ongoing struggle of the members to balance the views of the other members against their own needs. Coalitions could occur as members worked together to tackle problems. The findings of this study highlight the importance of exploring the perspectives of all members of the triad. This should help health care professionals to improve the quality of the support they provide to caregivers and care-recipients.
We employed an auto-ethnography approach to explore the affective dimension of life review sessions with community-dwelling older military veterans with minor cognitive impairment (MCI) and early dementia. Using researchers' analytic memos, we identified facilitators' interactional strategies that fostered the participant's sense of personal identity, dignity and social self-worth. Interaction among participant, caregiver, and facilitators evoked a range of emotional responses, offering a window into the affective world of MCI and early dementia. Positive emotional responses outnumbered negative emotional responses by a ratio of two-to-one in the life review sessions; however, negative emotions were more revelatory of current struggles with declines in health and function. Facilitators utilized two interactional strategies, in particular, to foster personhood and social value of participants: focusing on the participant and creating an empathic connection with the participant. Further work is needed to understand the role of emotions in research interactions and to examine the psychosocial mechanisms through which positive affect functions in promoting identity, personhood and social value among persons with MCI and early dementia.
Background and purpose
The mechanisms underlying the success of doll therapy are poorly understood. The aims of this study were to explore how people in care, doll users and non-users, make sense of doll use in their settings.
A grounded theory approach was used, recruiting participants from three residential care homes involving four male and 12 female residents. Data collection occurred in two phases; five participants took part in a focus group and later 11 participants were interviewed individually. Eight of the 11 participants had dementia, and four participants were actively using dolls.
Results and conclusion
The results are presented as themes, and sub-themes, consisting of four main categories (intrapersonal features, interpersonal features, behavioural benefits, ethical and moderating factors). This thematic analysis shows that residents generally support the use of dolls, believing that dolls can have a positive impact on some users. The mechanisms by which this impact is achieved are discussed together with the ethical concerns.
Studies indicate that social integration has a significant influence on physical and mental health. Older adults experience an increased risk of social isolation as their social networks decline with fewer traditional opportunities to add new social relationships. Deaths of similar aged friends, cognitive and functional impairments, and relocating to a nursing home (NH) or assisted-living (AL) facility contribute to difficulties in maintaining one's social network. Due to the paucity of research examining the social networks of people residing in AL and NH, this study was designed to develop and test the feasibility of using a combination of methodological approaches to capture social network data among older adults living in AL and a dementia special care unit NH.
Social network analysis of both egocentric and sociocentric networks was conducted to visualize the social networks of 15 residents of an AL neighborhood and 12 residents of a dementia special care unit NH and to calculate measures network size, centrality, and reciprocity.
The combined egocentric and sociocentric method was feasible and provided a robust indicator of resident social networks highlighting individuals who were socially integrated as well as isolated.
This article describes the impact of music therapy upon a group of nine people with advanced dementia in a hospital setting. It demonstrates how the impact of music therapy was measured using the case notes completed by nursing and care staff and how these notes suggested that music therapy had a positive effect on the mood and behaviour on eight of the nine people receiving music therapy.
This study evaluated adapted gardening as an activity for people with advanced Huntington's disease (HD) and explored its therapeutic aspects. Visitors and staff completed a questionnaire and participated in structured interviews to capture further information, whereas a pictorial questionnaire was designed for residents with communication difficulties. Staff reported that gardening was a constructive, outdoor activity that promoted social interaction, physical activity including functional movement and posed cognitive challenges. Half the staff thought the activity was problem free and a third used the garden for therapy. Visitors used the garden to meet with residents socially. Despite their disabilities, HD clients enjoyed growing flourishing flowers and vegetables, labelling plants, being outside in the sun and the quiet of the garden. The garden is valued by all three groups. The study demonstrates the adapted method of gardening is a stimulating and enjoyable activity for people with advanced HD.
Behavioral symptoms are common in all types of dementia and often result in significant caregiver stress and illness, institutionalization of the patient, and reduced quality of life for the patient and caregiver. Health care practitioners often lack the expertise or time to adequately assess behavioral symptoms or counsel caregivers about interventions. Our goal was to implement a specialty clinic managed by advanced practice nurses to assess and manage behavioral symptoms associated with dementia. The clinic evaluations consisted of an assessment of the patient by the Nurse Practitioner during the time that the family caregiver(s) was interviewed by the Clinical Nurse Specialist and focused on an assessment of the cognitive and functional abilities of the patient, identification of triggers for the problematic behaviors, and assessment of caregiver coping. We evaluated 66 dyads since implementation in February 2010. The patients were primarily female, Caucasian, 74.3 years of age with Alzheimer's disease. The majority of caregivers were spouses (n = 44) followed by adult children (n = 20) and then siblings (n = 2). Targeted interventions were developed and caregiver counseling, support, and education were an integral part of the consultation and included written information, video instruction, and internet resources. Evaluations indicated caregivers and referring providers found the appointment helpful in managing behavioral symptoms and caregiver stress.
This report will elucidate the psychometric properties of the Cultural Justifications for Caregiving Scale (CJCS) and evaluate the differences in cultural values and demographic variables among a group of African American and White caregivers. The CJCS measures the cultural reasons for and expectations about providing care to an older relative.MethodsCJCS data were collected from 202 adults caring for an older relative with memory loss. The factor structure of the CJCS was analyzed for reliability and its correlation with other measures pertaining to the caregiving experience.ResultsExploratory factor analyses suggested two underlying factors relating to Duty and Reciprocity with high levels of reliability. The two factors showed different correlational patterns with other measures associated with the caregiving experience (CG demographics and well-being).DiscussionFindings provide further evidence that the CJCS is a reliable measure for use with African American and White caregivers. Moreover, cultural motivations to provide care may differ for ethnically diverse CGs based on religious backgrounds and beliefs about family expectations surrounding the care of loved ones. The application of the CJCS is also discussed.
This paper reports on a study which explored the views and attitudes of family members towards the sexual expression of residents with dementia in residential aged care facilities in two states in Australia. Recruitment was challenging and only seven family members agreed to an interview on this topic. Data were analysed using a constant comparative method. Family were generally supportive of residents' rights to sexual expression, but only some types of behaviours were approved of. There was an acknowledgement that responding to residents' sexuality was difficult for staff and many families believed that they should be kept informed of their relative's sexual behaviours and moreover be involved in decision making about it. Findings suggest the need for family education and a larger study to better understand the views and motivations of family carers and how these might impact on the sexual expression of the older person with dementia living in residential aged care.
Aggressive behavior between residents with dementia in long-term care residences is a concerning but understudied phenomenon. The goal of the study was to identify the circumstances, sequence of events, and triggers that lead to these behaviors. I collected the data during 10 months in two special care units of an assisted living residence. I used participant observation as the primary data collection strategy, complemented by review of clinical records and semi-structured interviews with care staff and managers. As the analytic framework, I used Grounded Theory informed by Miles and Huberman's approach. In a substantial number of the reported 85 incidents, I identified observable early warning signs; in the majority, I identified observable causes or triggers prior to the aggressive acts. The majority of incidents were situational-reactive (circumstance-driven) and therefore potentially modifiable. Twelve effective staff prevention strategies were identified. I suggest incorporating the study findings into care staff training programs.
In 2011, the U.S. National Institute on Aging published guidelines for clinical diagnostics for Alzheimer's disease dementia. These guidelines define a continuum with three stages-an early, pre-clinical stage with no symptoms, followed by mild cognitive impairment, and a final stage of Alzheimer's disease dementia. This methodological critique examines the validity of this continuum. No studies exist showing the progression of these biomarkers to Alzheimer's disease. There is also a lack of empirical evidence showing how biomarkers determine mild cognitive impairment, which has multiple etiologies. The guidelines fail to explain anomalies where there are biomarkers but no expression of Alzheimer's disease.
This study had two objectives: firstly, to assess and compare the frequency and circumstances of agitation and, secondly, to generate decision-making aids for the treatment of agitation patients by applying a nursing intervention in cases of dementia and agitation. For that purpose, 1002 measurements of open nursing interventions in cases of agitation were obtained over a period of 11 weeks in two nursing homes in the city of Zurich and in the nursing home Sonnweid. Before, during and after two intervention periods of four weeks each, data were collected for 60 persons suffering from severe dementia. The results show that two-thirds of the residents were never agitated, one-quarter was moderately agitated and only very few suffered from medium-to-severe agitation. In almost half the cases, agitation occurred while the person was alone (46%), followed by cases of agitation as a constant state (26%). There was rarely any agitation while the residents were engaged in activities. After analysing 433 documented cases, it turned out that the most successful care interventions were avoiding noise, accompanying the person to the toilet, communication/validation, walking about/movement and administering beverages. Being based on newly translated observational methods and a unique longitudinal study design with combined intervention, this study provides important insights into how agitation in dementia can be influenced within the care context, as well as a practical evaluation of interventions specific to different institutions.
Longstanding concerns about quality care provision, specifically in the area of long-term care, have prompted calls for changing the culture of care to reflect more client-driven and relationship-centred models. Despite an increase in culture change initiatives in both Canada and the United States, there is insufficient information about the theories and approaches that guide culture change. The purpose of this paper is to describe a culture change initiative currently underway in Canada, the Partnerships in Dementia Care Alliance, and the theoretical foundations informing our work. More specifically, we describe how the theoretical and philosophical underpinnings of the Alzheimer Disease and Related Dementias framework, the authentic partnership approach, participatory action research and Appreciative Inquiry have been integrated to guide a culture change process that encourages working collaboratively, thinking and doing differently and re-imagining new possibilities for changing the culture of dementia care.
Older adults living alone with dementia are at greater risk of placement in long-term care homes compared with those living with others. Healthcare professionals have vital roles in supporting them to continue living in the community. Yet, little is known about how healthcare professionals fulfill these roles and what their experiences are like. The study purpose was to describe health care professionals' experiences of caring for older people with dementia living alone. Using a qualitative descriptive approach and qualitative content analysis method, 15 healthcare professionals were interviewed in Ontario, Canada. The overall theme of the findings, doing the best we can for them, involved discussing sensitive care issues with what professionals viewed as gentle realism. Walking the tightrope expressed tensions in meeting professional responsibilities. Constraints (my hands are tied) and boundaries (it's not my job, it's not my decision) described perceived limitations on professional roles. Effects of the emotional struggle involved in working with these older people were lessened by believing I did the right thing. The findings have implications for what we could do better for older people with dementia living alone, through integration of person-centered/relationship-centered principles in education programs, community agency policies, a national dementia care strategy, and culture change in community care.
People with mild cognitive impairment and Alzheimer's disease are likely to be challenged by the multitude of everyday technology in today's society. The aim of this study was to explore how they try to prohibit, avoid or solve problems in everyday technology use, maintain skills, and learn to use new technology. To explore how the participants applied and reasoned about using everyday technology in real-life situations interviews were conducted while the participants used their own technology in their homes. Interviews were conducted with 20 participants with mild cognitive impairment (n = 10) or Alzheimer's disease (n = 10). The analyses were inspired from grounded theory and resulted in one core category and three sub-categories that represent sub-processes in the core. The core finding presents a continuous, intertwined process of learning and using everyday technology, highlighting how the context was interwoven in the processes. The participants used a rich variety of management strategies when approaching technology, including communication with the everyday technologies on different levels. The findings underscore that it is important to support continued use of everyday technology as long as it is valued and relevant to the person with mild cognitive impairment or Alzheimer's disease. The intertwined process of learning and using everyday technology suggests how support could target different sub-processes.
This article describes the social positioning of older people living with Alzheimer's disease who scream in a long-term care home. Few studies have focused on the social positions taken by older people, their family and formal caregivers during interaction and their effects on screams. A secondary data analysis was conducted using Harré and Van Langenhove's positioning theory. The results show that older people are capable of positioning and repositioning themselves in relational patterns. Family and formal caregivers position older people who scream according to their beliefs about their lived experience. They also react emotionally to older people and try to influence their behaviors. Understanding the social positioning of older people with Alzheimer's disease brought out their capacities and their caregivers' concerns for their well-being. Interventions should focus on these strengths and on promoting healthy relations in the triads to enhance quality of care in long-term care homes.
In the decade following the tragedies of 9/11, a US-led "War on Terror" has coincided with a US-led "War on Alzheimer's disease". Not only has the rhetoric from these two wars overlapped and produced similar practical and conceptual problems, the campaigns have also become interwoven through the emerging public health issue of war-related head injuries, as well as a shared neglect for environmental contributions to human suffering. This article first explores similarities in the framing and prosecution of both wars, and then considers the long-term consequences of traumatic brain injuries (TBI) and traumatic environmental injuries (TEI) in the context of a society facing the increased prevalence of dementia. Ultimately, it is argued that addressing the challenges of cognitive aging and preventing violent social conflict both require a vernacular of higher ideals and values - as well as new language patterns rising out of the ecological movement - to trump the more expedient war rhetoric that has disproportionately marked public discourse around terrorism and Alzheimer's disease during the past decade.