Dementia

Published by SAGE Publications
Online ISSN: 1741-2684
Publications
Article
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.
 
Sources of advice sought for further information about MCA Sources of advice Number of participants who felt they would turn to them 
Article
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.
 
Continued. 
What is unknown? 
Continued. 
What are plausible directions for the future? 
Article
Given that there may well be no significant advances in drug development before 2025, prevention of dementia-Alzheimer's disease through the management of vascular and lifestyle-related risk factors may be a more realistic goal than treatment. Level of education and cognitive reserve assessment in neuropsychological testing deserve attention, as well as cultural, social, and economic aspects of caregiving. Assistive technologies for dementia care remain complex. Serious games are emerging as virtual educational and pleasurable tools, designed for individual and cooperative skill building. Public policies are likely to pursue improving awareness and understanding of dementia; providing good quality early diagnosis and intervention for all; improving quality of care from diagnosis to the end of life, using clinical and economic end points; delivering dementia strategies quicker, with an impact on more people. Dementia should remain presented as a stand-alone concept, distinct from frailty or loss of autonomy. The basic science of sensory impairment and social engagement in people with dementia needs to be developed. E-learning and serious games programs may enhance public and professional education. Faced with funding shortage, new professional dynamics and economic models may emerge through coordinated, flexible research networks. Psychosocial research could be viewed as an investment in quality of care, rather than an academic achievement in a few centers of excellence. This would help provide a competitive advantage to the best operators. Stemming from care needs, a logical, systems approach to dementia care environment through organizational, architectural, and psychosocial interventions may be developed, to help reduce symptoms in people with dementia and enhance quality of life. Dementia-friendly environments, culture, and domesticity are key factors for such interventions. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
 
Article
To describe how people experiencing dementia define quality of life and how this may be supported. Qualitative descriptive component of mixed methods cross-sectional study. Western Canadian community (4-h weekly care minimum), supportive housing (24-h support/supervision), personal care homes (24-h nursing). One hundred and thirty-six persons aged 65+ experiencing dementia. Semi-structured interview questions. Rating of meeting life's goals. Participants characterised quality of life as: freedom, independence, having basic needs met, physical health, engagement in meaningful activities and tranquility. A need for self-determination/choice was evidenced across all domains. Increased access to skilled nursing care, support for meaningful engagement with family and meeting life's goals were endorsed as adding most to quality of life; 43% reported meeting all life's major goals. People experiencing dementia may have better quality of life when choice/self-determination is supported. Enhancements in care environment, independence, engagement and meeting of life's goals merit urgent attention. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
 
Article
The 'Pathways to Diagnosis' study captured the experience of the prediagnosis period of Alzheimer's disease and related dementias through indepth interviews with 29 persons with dementia and 34 of their family caregivers across four sites: anglophones in Calgary, francophones in Ottawa, Chinese-Canadians in Greater Vancouver and Indo-Canadians in Toronto. In this cross-site analysis, we use the 'Candidacy' framework to comprehensively explore the challenges to securing a diagnosis of dementia in Canada and to develop relevant health and social policy. Candidacy views eligibility for appropriate medical care as a process of joint negotiation between individuals and health services, which can be understood relative to seven dimensions: identification of need, navigation, appearances at services, adjudication by providers, acceptance of/resistance to offers, permeability of services and local conditions. Interviewees experienced challenges relative to each of the seven dimensions and these varied in form and emphasis across the four ethno-linguistic groups. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav. Finite link: http://dem.sagepub.com/content/15/6/1436.full.pdf?ijkey=tHrVdRtAzyNaH4l&keytype=finite
 
Article
This paper describes the use of the "Living Well with Dementia" or LivDem model of group support for people affected by dementia within a Primary Care setting. Five people affected by dementia and their carers joined a 10-week group, although one man withdrew before the start due to illness. Joint sessions were held on the first and the final meetings, with separate parallel group sessions for people affected by dementia and their carers for the remaining eight sessions. One person affected by dementia and their carer withdrew due to illness before the end of the sessions : A self-report measure of Quality of Life suggested improvements for two of the three people affected by dementia who completed all of the sessions. The proxy ratings of carers indicated improvements for all three participants. Qualitative interviews were carried out with participants and carers to assess their experience of the group. Although both people affected by dementia and their carers found the LivDem intervention helpful, concerns remain about the continued need for support by a Dementia specialist. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
 
Article
Background 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. Method 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) . Findings 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. Conclusion 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.
 
Demographics by day care centers a 
Caregiver demographics 
Care recipient demographics 
Outcome variable by experimental group 
Intervention effect by experimental group 
Article
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.
 
Article
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.
 
Article
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.
 
Article
Spousal caregivers of persons with dementia often have difficulty engaging persons with dementia in leisure activities. This qualitative descriptive study identifies how caregivers perceive their spouses' participation in leisure activities since dementia onset and the professional guidance caregivers require to increase persons with dementia participation in shared leisure activities. Nine spousal caregivers from a hospital-based caregiver intervention attended one of three focus groups. Using symbolic interactionism and selective optimization with compensation theory as guiding frameworks, thematic content analysis was performed. Three major themes were identified: Recognizing and acknowledging changes, Making sense of changes and conflicts, and Embracing changes and forging ahead. Findings can be used by healthcare providers to better understand caregivers' needs for engaging persons with dementia in shared leisure activities, and inform development of feedback protocols to enhance caregiver interventions. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
 
Article
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.
 
Article
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).
 
Article
Background: 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. Methods: 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. Results: 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. Conclusion: 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.
 
Timetable. 
Work-based tasks/assignments completed as part of the Dementia Champions Programme. 
Reported confidence in ability to fulfil learning outcomes: mean, standard deviation, and range. 
Evaluation of Study Day sessions, number of participants who completed evaluations and mean rating. 
Article
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.
 
Number of discharges and average length of stay by age group and recorded diagnosis of dementia. a 
Average length of stay related to specified principal procedures, for those with and without a diagnosis of dementia. 
Cost of excess length of stay associated with dementia. 
Article
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.
 
Article
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.
 
Article
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.
 
Article
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. Methodology 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.
 
Article
Background: 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. Methods: 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. Results: 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.
 
Article
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.
 
Article
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.
 
Article
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.
 
Article
The Alzheimer's Association's Memories in the Making® (MIM) art activity program is intended to enhance the well-being of individuals who are living with dementia. Previous evaluations of MIM have found that participants show benefits on several well-being domains measured by the Greater Cincinnati Chapter Well-Being Observation Tool(©). The current study extended those findings by looking for evidence of carry-over effects beyond the temporal boundaries of MIM sessions. Additionally, this study evaluated key psychometric qualities of the assessment instrument. Seventy-six MIM participants with middle- to late-stage dementia were evaluated by interns and care facility staff at the beginning, middle and end of a 12-week MIM program. Interns focused on behavior within MIM sessions and staff rated functioning outside MIM sessions. Staff reported no significant changes in resident well-being across the 12-week program. Interns reported significant improvements from the beginning to middle and end of the program on five well-being domains. Psychometric analyses of the Greater Cincinnati Chapter Well-Being Observation Tool(©) identified weaknesses in inter-rater reliability and found that the instrument measures two orthogonal factors - interpreted as 'Well-Being' and 'Ill-Being' - not the seven domains claimed. Quantitative evidence for the effectiveness of MIM is ambiguous, but anecdotal observations indicate that the program is beneficial for some participants, if only fleetingly.
 
Article
Objectives 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.
 
Article
Minimal research explores the impact of dementia and a dementia diagnosis on families from the unique vantage of senior health professionals. The participants of this study, eight senior aged care professionals, provided unique interpretative insights into family dynamics and sense-making on the journey with dementia, and their own role in that journey. Both positive and negative perspectives were sought. Data from semi-structured interviews were analysed using Interpretative Phenomenological Analysis (IPA). One superordinate theme, Dementia naiveté; redefined intimacy, overarched Embarrassed shame; Maintaining hope; Redefining a model of intimacy; and Redefined relational intimacy and growth. Within these themes, the participants shed light on hurtful embarrassment and shame experienced by families associated with the diagnostic label given to a loved one. This label was perceived to either trigger separation, hurt and immobility through ignorance, or precipitate a frenzy of naive yet hopeful energy for seeking that elusive cure. The participants saw their role as one of enacting a new way of connecting what was with what could be. Thus, they modelled advocacy, integral care and relational intimacy. Validation came in witnessing a redefining of intimacy in many families who were able to embrace that holistic and empathic approach to the shifting presentation of dementia. Psychological well-being was observed to occur when families embraced growthful domains, e.g. acceptance, hope, relational closeness and altruistic concern for other families. Implications for future care models are discussed. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
 
Article
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.
 
Article
There is a growing appreciation of the significance of socio-cultural context for the experiences of an individual living with dementia. There is, too, an emergent awareness that dementia is a gendered issue, disproportionately affecting women compared with men. However, little attention has been given as yet to the experiences of lesbian and bisexual women living with dementia. This article addresses this gap in knowledge, exploring the significance of the intersection of ageing, gender and sexuality for lesbian and bisexual women with dementia. It suggests that stigma and social marginalisation associated with dementia and with ageing, gender and sexuality intersect to compound the social exclusion of lesbians and bisexual women. This has implications for early diagnosis and treatment. Moreover, community care policy, which is predicated on heterosexist norms fails to take into account older lesbians and bisexual women's support networks and so is less likely to be attuned to their needs. Residential care provision is perceived by older lesbians and bisexual women as being heteronormative at best and homophobic at worst. Services which do not recognise, validate and support their identities will compound their anxiety, confusion and distress. This may be contrary to Equality and Human Rights legislation and UK social policies. This paper draws upon, and analyses, extracts from a range of authorship, synthesising the material to present novel insights into the significance of gender and sexuality for the experience of dementia and dementia care. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
 
Article
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.
 
Article
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.
 
Article
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.
 
Integrated Theoretical Framework. 
Article
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.
 
Article
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.
 
Article
Simulated presence therapy is a technique which utilises a familiar recorded voice to calm and reassure people with dementia who are agitated or anxious. Although simulated presence therapy has shown potential benefits in small-scale studies, practical limitations in making and playing the recordings have restricted its use. An alternative method of delivering a message from an attachment figure is through a personal message card. This was one of seven products used within the Bath Memory Technology Library which was made available free of charge to people affected by dementia and their carers. This paper provides an evaluation of the personal message cards. Although feedback was received on only 10 of the 24 cards that were distributed, for nine people there was evidence that the cards met the goals that had been set either fully or in part, and that people affected by even quite severe levels of dementia could benefit from them. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.
 
Article
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.
 
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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.
 
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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.
 
Top-cited authors
Jan Dewing
  • Queen Margaret University
Mike Nolan
  • The University of Sheffield
Linda Clare
  • University of Exeter
Pia Kontos
  • Toronto Rehabilitation Institute
Ingrid Hellström
  • Linköping University