August 01, 2016

Dementia – The international journal of social research and practice,

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Table of Contents

July 2016; 15 (4)

Top of Form


The experience of self and threats to sense of self among relatives caring for people with Alzheimer’s disease

Dementia July 2016 15: 467-480,

Abstract This study explored how the relatives of people with Alzheimer’s disease expressed Self 2 and Self 3 according to Harré’s social constructionist theory of selfhood. Having a relative with Alzheimer’s disease affects one’s life. In this study, we concentrated on how close relatives of people with Alzheimer’s disease experienced their sense of self. This study was descriptive and qualitative. Interviews were conducted with 20 relatives of 10 people with Alzheimer’s disease from 2009 to 2011. The data were analysed according to Harré’s social constructionist theory of selfhood including Selves 2 and 3. Participants reported that Alzheimer’s disease challenged their personal attributes, relations and positioning. Understanding how Alzheimer’s disease affects the sense of self among close relatives is important, as this knowledge is pivotal for supporting these relatives who are often informal caregivers in ways that enable a fulfilling and meaningful life.


Creating a duet: The Couples Life Story Approach in the United States and Japan

Dementia July 2016 15: 481-493,


There is a global need for interventions that help couples who are dealing with dementia. This paper describes the way in which interventionists from the United States and Japan participated in the development of an intervention for dyads in which one person is experiencing memory loss. The 5-week intervention, the Couples Life Story Approach, helps dyads to reminisce about their life together as a couple, to work on their patterns of communication, and to develop a Life Story Book. Based on an analysis of cases conducted in the United States (n = 20 couples) and Japan (n = 9 couples), this paper highlights the cross-fertilization process that has occurred as interventionists from the two countries have shared their experiences with one another. Using case illustrations, the discussion focuses on the clinical themes that have emerged for couples in the United States and Japan


The relationship between apathy and participation in therapeutic activities in nursing home residents with dementia: Evidence for an association and directions for further research

Dementia July 2016 15: 494-509,


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.


Information and care: A relational approach

Dementia July 2016 15: 510-525,


This article explores how the provision of information about dementia impacts on carers and the caring relationships in which they are involved. Narrative interviews were undertaken with 25 carers who had undertaken the Alzheimer’s Society – run Carer Information and Support Programme in one of seven sites across London and the South East. Thematic analysis identified two major themes relating to the impact of information on carer and caring relationships (‘understanding and care’ and ‘emotional impact of information’), and another theme relating to the context within which the information was provided and shared (‘relational practices in information-giving and receiving’). Findings suggest that while information, particularly in the form of new knowledge about how dementia progresses, helps to improve understanding and increase confidence, competence and a sense of security and achievement in caring practices, it can also confound and complicate caring practices in ways that reflect and reinforce previously difficult relationships. Providing information in the context of carers’ support was important for most participants but others were less able to benefit from this, especially where they felt unrecognised or where the timing of information felt inappropriate to their needs. Our analysis complements and extends previous scholarship emphasising the relational nature of care by showing how information can both enhance and complicate care relationships, depending on both specific care contexts and on how carers experience the context of information provision.


COMMUNI-CARE: Assessment tool for reactions and behaviours of patients with dementia in a multisensory stimulation environment

Dementia July 2016 15: 526-538, Abstract

Background The ‘Snoezelen’ is an approach based on stimulation and sensory stimulation proposals, giving priority to the notion of caretaking. The aim of this paper is to present the creation and validation of the COMMUNI-CARE scale. This is a new tool that allows for an evaluation of the psycho-emotional well-being that the patient with dementia shows in a ‘Snoezelen’ multisensory stimulation environment.

Methods In total 429 evaluations in 143 multisensory stimulation interventions were made using the COMMUNI-CARE scale, in 16 patients between 53 and 85 years of age, diagnosed with moderate to severe dementia. The goal was to evaluate the psycho-emotional well-being the patients present.

Results The tool’s internal consistency showed a Crombach alpha of 0.90. The concurrent validity between the COMMUNI-CARE scale and the Clinical Global Impression (CGI) was of r = −0.961. The Kappa index used to determine the reliability between evaluators was of K = 0.87.

Conclusions The COMMUNI-CARE scale fulfills the basic principles of classic psychometrics of construct, and criterion validity and reliability. It does so while showing a clear idea, through its five subscales (anxiety, communication, pleasure, adaptation to the surroundings and affection), of the degree of well-being that the patient with dementia shows during such interventions. This scale embodies, through psychometrics, a very subjective human experience with a tool unavailable to date.

Coffee, Cake & Culture: Evaluation of an art for health programme for older people in the community

Dementia July 2016 15: 539-559,


Arts for health initiatives and networks are being developed in a number of countries and an international literature is emerging on the evidence of their benefits to people's health, wellbeing and quality of life. Engagement in cultural and creative arts by older people can increase their morale and self-confidence and provides opportunities for social connection. Museums and galleries are increasingly required to justify their expenditure, reach and impact and some are working in partnership with local councils, hospitals, schools and communities to improve access to their collections. There is a body of literature emerging that describes such initiatives but empirical evidence of their benefits is less developed. This article reports an evaluation of an art for health initiative – Coffee, Cake & Culture organised and delivered by Whitworth Art Gallery and Manchester Museum in 2012 for older people living in a care home and a supported living facility. The study has identified the benefits and impacts of the arts for health programme and its feasibility for older people, with or without diagnosed memory loss – dementia, living in a care home or supported living facility and their care staff. The findings demonstrate there were benefits to the older people and their care staff in terms of wellbeing, social engagement, learning, social inclusion and creativity. These benefits were immediate and continued in the short term on their return home. The majority of older people and care staff had not previously been to the art gallery or museum and the programme encouraged creative arts and cultural appreciation which promoted social inclusion, wellbeing and quality of life. The programme is feasible and important lessons were identified for future planning. Further research involving partnerships of researchers, arts for health curators, artists, care staff, older people and their families is warranted.


“We’re all thrown in the same boat … ”: A qualitative analysis of peer support in dementia care

Dementia July 2016 15: 560-577,


Peer support is well established in fields such as the disability movement and mental health and is increasingly recognised as one way of enabling support by and for people with a diagnosis of dementia and their immediate carers. It was central to the implementation of the National Dementia Strategy (NDS) for England, when 40 demonstration sites were established. This mixed-methods study included in-depth qualitative interviews with people living with dementia (n = 101) and staff/stakeholders (n = 82) at 8 of the 40 sites. Data analysis was a five-stage process: coding framework developed (using 25 transcripts); further development of the framework (using a further 70 transcripts); development of emerging themes; modelling of themes and verification of models based on the entire data set. Peer support had positive emotional and social impact that was rooted in identification with others, a commonality of experience and reciprocity of support. There was also a contrast between the quality of peer support and support from professionals. This emphasises the significance of lived experience and promoting a strength-based approach to interpersonal support that is enabling and challenges a deficit approach to understanding dementia.

Crucial dimensions constituting dignity experience in persons living with dementia

Dementia July 2016 15: 578-595,


Dignity is seen as an essential need, fundamental right, and inherent quality of each human being. There is however, a need for increased knowledge on crucial dimensions constituting dignity experience in persons living with dementia. This study explored personal dimensions of life which persons with dementia perceived crucial for experiencing dignity in their daily lives. Based on the findings of eight empirical sub-dimensions, three main dimensions crucial for constituting dignity experience, were identified through hermeneutical interpretation: A historical dignity-dimension, acknowledging one’s own life-projects and life-history; an intrapersonal dignity-dimension, recognizing one’s own human worth, and living according to internal values; and an interpersonal dignity-dimension, experiencing being part of a caring and confirming communion. Knowledge of dignity preservation should be a crucial foundation for future dementia care.


Measuring hope among families impacted by cognitive impairment

Dementia July 2016 15: 596-608,


The current exploratory investigation aims to establish the reliability and validity of a hope measure, the Herth Hope Index, among families impacted by early cognitive impairment (N = 96). Exploratory factor analysis was used to examine the dimensionality of the measure. Bivariate analyses were used to examine construct validity. The sample had moderately high hope scores. A two-factor structure emerged from the factor analysis, explaining 51.44% of the variance. Both factors exhibited strong internal consistency (Cronbach’s alphas ranged from .83 to .86). Satisfaction with social support was positively associated with hope, supporting convergent validity. Neurocognitive status, illness insight, and depression were not associated with hope, indicating discriminant validity. Families impacted by cognitive impairment may maintain hope in the face of a potentially progressive illness, regardless of cognitive status. The Herth Hope Index can be utilized as a reliable and valid measure of hope by practitioners providing support to families impacted by cognitive impairment.


The emotional well-being of young people having a parent with younger onset dementia

Dementia July 2016 15: 609-628,


Younger onset dementia (YOD) not only affects the person with the diagnosis but the whole family, which often includes young people. A limited body of research on this group of young people indicates that they experience varying degrees of emotional trauma. We explored the lived experiences of young people having a parent with YOD from the perspective of the social model of disability. Data were available from semi-structured interviews with 12 young people who had a parent with YOD looking at their lived experiences between 8 and 24 years. Thematic analysis identified four main themes: the emotional toll of caring, keeping the family together, grief and loss and psychological distress. The social model of disability theory provides a helpful framework for these families who experience significant emotional distress, demonstrating that the disability is often socially constructed by a society, which marginalizes and excludes them. A ‘whole family’ approach is proposed, where the needs of young people and their parents are respected and responded to age appropriately.


Measuring cultural justifications for caregiving in African American and White caregivers

Dementia July 2016 15: 629-645,


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.

Methods CJCS 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.

Results Exploratory 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).

Discussion Findings 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.


Tracing the successful incorporation of assistive technology into everyday life for younger people with dementia and family carers

Dementia July 2016 15: 646-662,


Research shows that people with late-onset dementia and their relatives can benefit from using assistive technology (AT). Few researchers have investigated the use and utility of AT in everyday life for younger people with dementia (YPD) and their family carers. The aim of this study is to explore what characterised the implementation process when the AT was experienced as beneficial to the YPD and the family carer in their daily life. The qualitative longitudinal study followed 12 younger people (i.e. those under 65 years of age), who had recently been diagnosed with dementia and 14 of their family carers. In-depth interviews and observations during the process were conducted at the beginning, and were repeated every 3rd month for up to 12 months. The data were analysed, and the participants’ experiences further discussed on the basis of embodied, social- and everyday life-situated approaches, in order to provide a deeper understanding of the interactive processes involved in the trajectory. Five elements in the process were identified as important for the experience of usefulness and successful incorporation of AT. The AT had to: (1) be valuable by addressing practical, emotional, and relational challenges; (2) fit well into, or be a better solution for, habitual practice and established strategies; (3) generate positive emotions, and become a reliable and trustworthy tool; (4) be user-friendly, adaptable, and manageable; and (5) interest and engage the family carer. The study demonstrated the importance of understanding the use and utility of AT on the basis of embodied and social participation in daily life. The family carers played a significant role in whether or not, and in which ways, AT was absorbed into the everyday life practice of YPD.


o    Richard Fleming,

o    Belinda Goodenough,

o    Lee-Fay Low,

o    Lynn Chenoweth,

o    and Henry Brodaty

The relationship between the quality of the built environment and the quality of life of people with dementia in residential care

Dementia July 2016 15: 663-680,


While there is considerable evidence on the impact of specific design features on problems associated with dementia, the link between the quality of the built environment and quality of life of people with dementia is largely unexplored. This study explored the environmental and personal characteristics that are associated with quality of life in people with dementia living in residential aged care. Data were obtained from 275 residents of 35 aged care homes and analysed using linear regression. The quality of the built environment was significantly associated with the quality of life of the resident measured by global self-report. Environmental ratings were not associated with proxy or detailed self-report ratings. Higher quality of life is associated with buildings that facilitate engagement with a variety of activities both inside and outside, are familiar, provide a variety of private and community spaces and the amenities and opportunities to take part in domestic activities.


The provision of assistive technology products and services for people with dementia in the United Kingdom

Dementia July 2016 15: 681-701,


In this review we explore the provision of assistive technology products and services currently available for people with dementia within the United Kingdom. A scoping review of assistive technology products and services currently available highlighted 171 products or product types and 331 services. In addition, we assimilated data on the amount and quality of information provided by assistive technology services alongside assistive technology costs. We identify a range of products available across three areas: assistive technology used ‘by’, ‘with’ and ‘on’ people with dementia. Assistive technology provision is dominated by ‘telecare’ provided by local authorities, with services being subject to major variations in pricing and information provision; few currently used available resources for assistive technology in dementia. We argue that greater attention should be paid to information provision about assistive technology services across an increasingly mixed economy of dementia care providers, including primary care, local authorities, private companies and local/national assistive technology resources.


Ethnic minority, young onset, rare dementia type, depression: A case study of a Muslim male accessing UK dementia health and social care services

Dementia July 2016 15: 702-720,


A case study comprised of formal interviews, formal observations and informal discussions investigated the motivations and experiences accessing dementia care health and social care services for a Muslim, Pakistani male with dementia. Motivations derived from ‘desperation’ and an inability to access support from family or religious community. Experiences of accessing services were mostly negative. Dementia services were ill-informed about how to support persons with young onset dementia, with pre-existing mental health conditions, from an ethnic minority. Education and training to remove barriers to all dementia care services is required for persons with dementia, their families and within dementia services and religious communities.


What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings

Dementia July 2016 15: 721-742,



This paper reviews recent literature on the experiences, attitudes and needs of caring for someone with dementia in Black and minority ethnic communities in the United Kingdom. Eight articles, which investigated carer experiences from Black and minority ethnic communities when caring for someone with dementia, were critically appraised. All eight studies used a qualitative methodology. The review identified several themes and issues across the qualitative studies. These included memory loss being viewed as a normal process of ageing, care being perceived as an extension of an existing responsibility, a poor understanding of what support services provide, the influence of migration, the impact of stigma and increased female responsibility. Methodological limitations of the research literature studies are also highlighted and clinically relevant implications are discussed, alongside recommendations for future research in this area.

Exploring staff perceptions on the role of physical environment in dementia care setting

Dementia July 2016 15: 743-755,


This study explored staff perceptions of the role of physical environment in dementia care facilities in affecting resident’s behaviors and staff care practice. We conducted focus groups with staff (n = 15) in two purposely selected care facilities in Vancouver, Canada. Focus group participants included nurses, care aides, recreation staff, administrative staff, and family. Data analysis revealed two themes: (a) a supportive physical environment contributes positively to both quality of staff care interaction and residents’ quality of life and (b) an unsupportive physical environment contributes negatively to residents’ quality of life and thereby makes the work of staff more challenging. The staff participants collectively viewed that comfort, familiarity, and an organized space were important therapeutic resources for supporting the well-being of residents. Certain behaviors of residents were influenced by poor environmental factors, including stimulation overload, safety risks, wayfinding challenge, and rushed care. This study demonstrates the complex interrelationships among the dementia care setting’s physical environment, staff experiences, and residents’ quality of life.


Transition from the spouse dementia caregiver role: A change for the better?

Dementia July 2016 15: 756-773,


One in 15 Australians over 65 experience dementia, and are commonly supported by spouses. Evidence demonstrates declining wellbeing for these caregivers as their role continues. There are indications of improvement once caregivers transition out of the role (recovery) but alternate suggestions that caregiving stress may be too damaging to be appeased (wear and tear). It seems plausible that reason for transition (care recipient’s move into residential care or death) will affect caregivers’ outcomes. A synthetic cohort method compared caregivers’ stress and wellbeing prior to, and one and two years post-transition. There was evidence of wear and tear for physical wellbeing but recovery for psychological wellbeing over time; with little difference based on reason for transition. Caregiver outcomes seem to be a function of the action rather than the reason for transition, but factors such as age must be considered when designing methods to support post-transition wellbeing.


Dementia and well-being: A conceptual framework based on Tom Kitwood’s model of needs

Dementia July 2016 15: 774-788,


The topic of well-being is becoming increasingly significant as a key outcome measure in dementia care. Previous work on personhood of individuals with dementia suggests that their subjective well-being can be described in terms of comfort, inclusion, identity, occupation and attachment. The study aimed to examine Tom Kitwood’s model of psychological needs and well-being in dementia based on the self-report of individuals with moderate or severe dementia and to differentiate and elaborate this model in the light of the empirical qualitative data. Nineteen inhabitants of a special long-term care unit were interviewed using a semi-structured interview. Data were analysed using content analysis. Thirty components within Kitwood’s model have been identified. A conceptual framework of subjective well-being in dementia was developed based on a theoretical background. The study was able to find indications that Kitwood’s model has empirical relevance. Nevertheless, it requires to be extended by the domain agency. Furthermore, the study suggests that individuals with dementia are important informants of their subjective well-being.


Trends in referred patient profiles in a memory clinic over 20 years

Dementia July 2016 15: 789-797,


The increasing numbers of people with dementia in the UK, as well as the associated costs have led to an effort to improve dementia services for the benefit of patients, caregivers and the taxpayer. These efforts have frequently emphasised the importance of early diagnosis in dementia care. We sought to test the hypotheses that the mean cognitive score of new referrals to a secondary care memory assessment service increased while mean age decreased over a period of 20 years. We retrospectively analysed the data of 1476 patients. The passage of time was associated with a significant increase in mean cognitive scores, while there was no association between time and age after controlling for other factors. We suggest that memory services need to be designed to meet the needs of less cognitively impaired patients. In practice this means that using simple screening tests is not sufficient in this group of patients


Use of photovoice with people with younger onset dementia

Dementia July 2016 15: 798-813,


Photography is a tool that has been used in research for many years. It allows people to create a record of an event, capture a complex phenomenon or to tell a story with pictures. Because it does not rely on language, it can be used with vulnerable populations who might not normally be included in research. This paper discusses the use of photography as one component of the evaluation strategy for a project that provided an opportunity for people with younger onset dementia to return to the workplace one day per week. Participants in the workplace project used photography to create a record of their experience of returning to the workplace. Based on the nature of the participant’s comments, photographs were grouped into four broad areas: impact of dementia, impact on family, the work experience and new friends. Issues related to the use of photography with people who have dementia are explored based on the experiences gained during this project.


Coping with cognitive impairment and dementia: Rural caregivers’ perspectives

Dementia July 2016 15: 814-831,


Caregiving in a rural context is unique, but the experience of rural caregivers is understudied. This paper describes how rural caregivers cope with caring for a loved one diagnosed with mild cognitive impairment or dementia using qualitative description to generate a low-inference summary of a response to an open-ended question. This approach allowed these rural caregivers to describe their positive experiences in addition to the more commonly explored caregiver experiences related to stress. Analyses of coping revealed use of social support, engaging in relaxing and physical activity, and cognitive reframing. In addition, caregivers reported strong faith and religiosity, and to a lesser frequency behavioral changes, checking in with the person with dementia via telephone, and joint activity. Predominantly, these methods reflect approach-based strategies. The current data suggest that these caregivers manage well and adopt adaptive coping strategies to meet the demands of the caregiving role.


Measuring the quality of life and well-being of people with dementia: A review of observational measures

Dementia July 2016 15: 832-857,


The dynamic nature of psychosocial interventions implies that trying to measure their effects using standardised clinical trial measures may not capture their full effects. Rich and valuable data during the sessions may be missed by using standard quality of life questionnaires. This paper compares observational measures in the context of recording the well-being of a person with dementia during and outside of a visual arts intervention. A literature search was conducted using systematic principles of searching, screening and retrieval to identify peer-reviewed English language evaluations of research projects using observational measures with people with dementia. Psychometric properties, strengths and weaknesses of 11 observational tools are reviewed in order to identify the most appropriate one for evaluating a visual art intervention for people with dementia. This review supports the Greater Cincinnati Chapter Well-Being Observation Tool as an appropriate measure to evaluate a visual art programme for people with dementia. The results of this review will help researchers plan projects to show the full range of effects for people with dementia for taking part in art sessions.


Care homes and the Mental Capacity Act 2005: Changes in understanding and practice over time

Dementia July 2016 15: 858-871,


The Mental Capacity Act 2005 provides the legal framework in England and Wales for the making of decisions in respect of people who have never had or have lost decision-making capacity. As part of a 5-year research program investigating the implementation and adoption of the Mental Capacity Act in dementia practice, we interviewed staff working in different care homes at two time points (32 staff at Time 1 in 2008 and 27 staff at Time 2 in 2012) in South East England. At baseline Time 1, daily practice seemed to resonate with Mental Capacity Act principles of respecting decisions and trying to act in a person’s best interests. This paper reports Time 2 findings. We found that few care home staff interviewed specifically reported finding the Mental Capacity Act helpful in crystallizing the legal basis of their work. Most continued to offer illustrations of day-to-day practice in which they paid attention to individual choices, took account of the wishes of residents’ families, and tried to act in residents’ best interests but referred major decisions to their seniors. This study highlights the potential of referring to specific day-to-day practice in care homes when offering training or scrutinizing practice in dementia care more generally so that the work is set in its legal as well as moral framework. Care home staff in this study reported that advanced planning and pre-specifying preferences were more common among new care home residents, especially those with dementia, indicating that greater understanding of these is required by staff.


Together but apart: Caring for a spouse with dementia resident in a care facility

Dementia July 2016 15: 872-890,



This longitudinal, exploratory study was designed to better understand the lived experience of spousal caregivers age 60 and older providing care to partners with Alzheimer’s disease and related dementias resident in a care facility. Twenty eight spousal caregivers were interviewed up to three times over a period of 2 years, and long-term care facility staff from four locations across British Columbia (BC), Canada participated in four focus groups. Thematic analysis of interview and focus group transcripts revealed a central, unifying theme ‘together but apart’. The results identify key targets for policy makers and service providers to support positive health and well-being outcomes for spousal caregivers providing care to their partners diagnosed with Alzheimer’s disease and related dementia and living in care facilities.


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