The Development and Validation of the Threat of Dementia Scale.

Dementia represents a substantial threat to the self. However, to date, there is no reliable way to measure how threatened people feel by dementia. This article reports on two online studies. In Study 1, 248 participants rated statements about dementia according to their threat to well-being. In Study 2, 99 participants (all students at the University of the West of England) completed the emerging scale (the Threat of Dementia Scale or ToDS). We validated this by examining its associations with conceptually related measures, including the revised Fraboni Scale of Ageism and the Fear of Alzheimer's Disease Scale. Study 1 yielded 13 statements that were highly intercorrelated and comprised a single factor. In Study 2, the ToDS demonstrated good construct validity and acceptable test-retest reliability. Higher levels of distancing predicted lower scores on the ToDS. The ToDS is a reliable and valid instrument that is the first statistically validated method of examining the extent to which dementia threatens well-being.

The Content of Nostalgic Memories Among People Living with Dementia.

Although dementia may affect the reliability of autobiographical memories, the psychological properties of nostalgic memories may be preserved. We compared the content of nostalgic (n = 36) and ordinary (n = 31) narratives of 67 participants living with dementia. Narratives were rated according to their self-oriented, social, and existential properties, as well as their affective content. Social properties and affective content were assessed using a linguistic word count procedure. Compared to the ordinary narratives described in the control condition, nostalgic narratives described a typical events, expressed more positive affect, and had more expressions of self-esteem and self-continuity. They were also rated higher on companionship, connectedness and the closeness of relationships, and reflected life as being meaningful. Despite their cognitive impairment, people living with dementia experience nostalgia in similar ways to cognitively healthy adults, with their nostalgic narratives containing self-oriented, social, and existential properties.

A qualitative study on conveyance decision-making during emergency call outs to people with dementia: the HOMEWARD project.

BACKGROUND: Paramedics are increasingly required to make complex decisions as to whether they should convey a patient to hospital or manage their condition at the scene. Dementia can be a significant barrier to the assessment process. However, to our knowledge no research has specifically examined the process of decision-making by paramedics in relation to people with dementia. This qualitative study was designed to investigate the factors influencing the decision-making process during Emergency Medical Services (EMS) calls to older people with dementia who did not require immediate clinical treatment. METHODS: This qualitative study used a combination of observation, interview and document analysis to investigate the factors influencing the decision-making process during EMS calls to older people with dementia. A researcher worked alongside paramedics in the capacity of observer and recruited eligible patients to participate in case studies. Data were collected from observation notes of decision-making during the incident, patient care records and post incident interviews with participants, and analysed thematically. FINDINGS: Four main themes emerged from the data concerning the way that paramedics make conveyance decisions when called to people with dementia: 1) Physical condition; the key factor influencing paramedics' decision-making was the physical condition of the patient. 2) Cognitive capacity; most of the participants preferred not to remove patients with a diagnosis of dementia from surroundings familiar to them, unless they deemed it absolutely essential. 3) Patient circumstances; this included the patient's medical history and the support available to them. 4) Professional influences; participants also drew on other perspectives, such as advice from colleagues or information from the patient's General Practitioner, to inform their decision-making. CONCLUSION: The preference for avoiding unnecessary conveyance for patients with dementia, combined with difficulties in obtaining an accurate patient medical history and assessment, mean that decision-making can be particularly problematic for paramedics. Further research is needed to find reliable ways of assessing patients and accessing information to support conveyance decisions for EMS calls to people with dementia.

The recall of dementia-related and neutral words by people with dementia: The ironic process of thought suppression.

OBJECTIVE: Thought suppression may not work effectively when people have a cognitive impairment. This study tests whether participants with dementia showed lessened or enhanced recall and recognition of dementia-related words compared with a control population. METHODS: Fifty participants living with dementia with mild levels of cognitive impairment and a control group of 52 participants without a diagnosis of dementia took part. A list of 12 words, composed of six dementia-related and six neutral words matched for frequency and length, was read out on four occasions, with the word order being varied for each presentation. Recognition was also assessed. RESULTS: There was an interaction between word-type and participant group at both recall and recognition. While control participants recalled more neutral than dementia-related words, there was no difference for dementia participants. However, dementia participants recognised a significantly higher proportion of the dementia-related words, while there was no difference in word-type recognition for control participants. CONCLUSIONS: This study adapts a social psychological paradigm to explore whether an important psychological mechanism for reducing distress can be affected by cognitive impairment. Our findings suggest that for people living with dementia, thought suppression may be either ineffective in reducing conscious awareness of distal threats or operate in an ironic fashion. While threatening proximal material may be repressed from awareness, distal threats may return into implicit awareness. This casts new light on research and has clinical implications.

Selective forgetting of self-threatening statements: Mnemic neglect for dementia information in people with mild dementia.

OBJECTIVE: We tested whether people with dementia manifest selective forgetting for self-threatening information, the mnemic neglect effect (MNE). This selective forgetting is observed among healthy adults in the recall, but not the recognition, of self-threatening feedback. METHODS: Sixty-four statements about dementia were rated for their level of negativity by 280 staff and students at University of the West of England. The 12 statements rated as most negative and the 12 statements rated as least negative were then read to 62 people with dementia. Participants were randomized to 1 of 2 conditions with the statements referring either to self or to another person. High-negativity and self-referent statements had strong threat potential. Participants recalled the statements and then completed a recognition task, which consisted of the 24 previously read statements and 24 new statements. RESULTS: Participants manifested the MNE: They recalled fewer high-negativity (compared with low-negativity) statements, but only when these referred to the self rather than another person. This pattern occurred independently of levels of depression or anxiety. Participants also made more self-protective intrusion errors when the statements referred to the self than another person. Participants did not differ in their recognition of statements. CONCLUSION: The MNE occurs among people with dementia. The selective forgetting of highly negative, self-referent statements serves to protect the self against the threat that dementia represents. Given the similarities between the MNE and the clinical phenomenon of repression, the findings may mark psychological processes that are implicated in the acceptance (or lack thereof) of a dementia diagnosis.

Living well with dementia groups: changes in participant and therapist verbal behaviour.

OBJECTIVES: This paper reports two related analyses of verbal material from seven Living Well with Dementia groups: the first examines changes in the verbal behaviours of participants across the course of the sessions in all seven groups; while the second contrasts therapist behaviour in two groups. METHODS: In the first analysis, recordings of three sessions from each group were transcribed and participant descriptions of dementia were analysed using the Markers of Assimilation of Problematic Experiences of Dementia (MAPED) rating procedure. In the second analysis, therapist behaviour in weeks 2 and 8 from two groups (F and G) was analysed using the Hill Counsellor Verbal response rating scale. Inter-rater reliabilities for the two sets of ratings were 'good' and 'very good', respectively. RESULTS: For the MAPED ratings, a five by four contingency table was analysed using chi-squared, which indicated a highly significant change in assimilation. There were significant higher levels of level 1 and 2 markers in the first two sessions and level 4 for sessions 5 and 6. Facilitators used significantly more direct guidance and information giving behaviour in the second session at Location F compared to Location G. CONCLUSIONS: The results suggest that important changes occurred in the way that dementia was described across the seven LivDem groups: this includes both reductions in the avoidance of direct references to dementia after the first two sessions, as well as an increase in 'insight' statements. Directive facilitator behaviour may be associated with poorer outcomes.

Individual and group psychotherapy with people diagnosed with dementia: a systematic review of the literature.

OBJECTIVES: Psychotherapy provides a means of helping participants to resolve emotional threats and play an active role in their lives. Consequently, psychotherapy is increasingly used within dementia care. This paper reviews the existing evidence base for individual and group psychotherapy with people affected by dementia. DESIGN: The protocol was registered. We searched electronic databases, relevant websites and reference lists for records of psychotherapy with people affected by Alzheimer's Disease, Vascular dementia, Lewy-body dementia or a mixed condition between 1997 and 2015. We included studies of therapies which met British Association of Counselling and Psychotherapy definitions (e.g. occurs regularly, focuses on talking about life events and facilitates understand of the illness). Art therapy, Cognitive Stimulation and Rehabilitation, Life Review, Reminiscence Therapy and family therapy were excluded. Studies which included people with frontal-temporal dementia and mild cognitive impairment were excluded. Data was extracted using a bespoke form, and risk of bias assessments were carried out independently by both authors. Meta-analysis was not possible because of the heterogeneity of data. RESULTS: A total of 1397 papers were screened with 26 papers using randomised, non-randomised controlled trials or repeated measured designs being included. A broad mix of therapeutic modalities, types, lengths and settings were described, focussing largely on people with mild levels of cognitive impairment living in the community. CONCLUSIONS: This study was limited to only those studies published in English. The strongest evidence supported the use of short-term group therapy after diagnosis and an intensive, multi-faceted intervention for Nursing Home residents. Many areas of psychotherapy need further research. Copyright © 2016 John Wiley & Sons, Ltd.

A cross-sectional investigation of public attitudes toward dementia in Bristol and South Gloucestershire using the approaches to dementia questionnaire.

BACKGROUND: To date, surveys of attitudes toward dementia have largely been conducted using unvalidated materials or have focused on healthcare professionals supporting people affected by dementia. The aim of this study was to carry out a survey of public attitudes toward people affected by dementia in Bristol and South Gloucestershire. METHODS: A survey was carried out using a modified version of the Approaches to Dementia Questionnaire (ADQ). Data from people living outside the area, and people who were working with people affected by dementia were omitted from the analysis. Responses from the remaining 794 ADQ questionnaires were weighted to correct for under-represented age, gender, and ethnic groups. RESULTS: Younger people held more positive attitudes toward dementia than older people. Individuals who identified themselves as White held more positive attitudes than non-White individuals. Individuals with personal experience of dementia held more positive attitudes than those with no experience of dementia. When considering age differences, gender played a role, with younger men having more positive scores than other groups. CONCLUSIONS: This is one of the first surveys of public attitudes to dementia to use a validated questionnaire such as the ADQ. The study provides a baseline of attitudes toward dementia for the Bristol and South Gloucestershire areas, against which we will be able to compare changes over time. This is important due to the emphasis in public health campaigns on improving attitudes toward dementia.

A pilot randomised controlled trial to compare changes in quality of life for participants with early diagnosis dementia who attend a 'Living Well with Dementia' group compared to waiting-list control.

OBJECTIVES: The aim of this paper is to report a pilot study in which participants who had recently received a diagnosis of dementia were randomised to either a 10-week group intervention or a waiting-list control. METHOD: Memory clinic staff with limited previous experience of group therapy were trained to lead a 10-week group therapy intervention called 'Living Well with Dementia'. Fifty-eight participants, all of whom had received a diagnosis of Alzheimer's disease, vascular or Lewy body dementia within the previous 18 months, were randomised to receive either the intervention or treatment as usual (waiting-list control). Data collection occurred at baseline, within two weeks after the intervention finished and at 10-week follow-up. RESULTS: The study met its recruitment targets, with a relatively low attrition rate for the intervention arm. The acceptability of the intervention and research methods was examined qualitatively and will be reported on elsewhere. For the primary outcome, measure of quality of life in Alzheimer's disease (QoL-AD), and secondary outcome, self-esteem, there was some evidence of improvement in the intervention group compared to the control group. There was, also, evidence of a reduction in cognitive functioning in the treatment group compared to the control. Such reported differences should be treated with caution because they are obtained from a pilot and not a definitive study. CONCLUSION: This pilot study succeeded in collecting data to inform a future definitive cost effectiveness clinical trial of Living Well with Dementia group therapy.

An evaluation of primary care led dementia diagnostic services in Bristol.

BACKGROUND: Typically people who go to see their GP with a memory problem will be initially assessed and those patients who seem to be at risk will be referred onto a memory clinic. The demographic forces mean that memory services will need to expand to meet demand. An alternative may be to expand the role of primary care in dementia diagnosis and care. The aim of this study was to contrast patient, family member and professional experience of primary and secondary (usual) care led memory services. METHODS: A qualitative, participatory study. A topic guide was developed by the peer and professional panels. Data were collected through peer led interviews of people with dementia, their family members and health professionals. RESULTS: Eleven (21%) of the 53 GP practices in Bristol offered primary care led dementia services. Three professional panels were held and were attended by 9 professionals; nine carers but no patients were involved in the three peer panels. These panels identified four main themes: GPs rarely make independent dementia diagnosis; GPs and memory nurses work together; patients and carers generally experience a high quality diagnostic service; an absence of post diagnostic support. Evidence relating to these themes was collected through a total of 46 participants took part; 23 (50%) in primary care and 23 (50%) in the memory service. CONCLUSIONS: Patients and carers were generally satisfied with either primary or secondary care led approaches to dementia diagnosis. Their major concern, shared with many health care professionals, was a lack of post diagnostic support.

How do emergency department staff respond to behaviour that challenges displayed by people living with dementia? A mixed-methods study.

OBJECTIVES: To investigate staff experiences of, and approaches to behaviour that challenges displayed by patients with dementia in the emergency department (ED). Behaviour that challenges is defined as 'actions that detract from the well-being of individuals due to the physical or psychological distress they cause within the settings they are performed', and can take many forms including aggressive physical actions, shouting and verbal aggression and non-aggressive behaviour including repetitive questioning, inappropriate exposure and resistance to care. DESIGN: Mixed-methods study consisting of an online survey and semistructured telephone interviews. Quantitative data were analysed and presented using descriptive statistics. Qualitative data were analysed thematically. SETTING: The EDs of three National Health Service (NHS) Hospital Trusts in Southwest England. PARTICIPANTS: Multidisciplinary NHS staff working in the ED. RESULTS: Fifty-two online survey responses and 13 telephone interviews were analysed. Most (24/36, 67%) survey respondents reported that they had received general training in relation to dementia in the last 2-5 years, however, less than a fifth (4/23, 17%) had received any ED-specific dementia training. All (48/48) felt that behaviour that challenges could potentially be prevented, though resource constraints and practice variation were identified. Four main themes emerged from the qualitative data: (1) the 'perfect storm' of the ED; (2) behaviour that challenges is preventable with the right resources; (3) improvisation and (4) requirement for approaches that are specific to the ED. CONCLUSIONS: The findings of this study suggest that ED staff do not feel that they are prepared to respond effectively to behaviour that challenges displayed by people living with dementia. Future work could adapt or develop an intervention to support ED staff in responding to behaviour that challenges.

The mnemic neglect effect and information about dementia: age differences in recall.

Dementia represents a more immediate threat for older than for younger adults. Consequently, different strategies may be used to defend the self against the threat of dementia. We hypothesised that older (compared to younger) adults are more likely to manifest mnemic neglect (in which information that is threatening to the self is selectively forgotten) to reduce distress for dementia-related information.Fifty-nine participants aged under 50 and 44 participants aged over 50 recalled 24 dementia-related statements that were either high or low in negativity. Participants were randomised to recall statements that referred either to themselves or another person. High-negativity, self-referent statements had the most substantial threat potential. The recall of older (but not younger) participants for high-negativity (vs. low-negativity) dementia-related statements was impaired when these statements referred to the self rather than to another person. These results indicate that older adults evince mnemic neglect in response to self-threatening information about dementia.

Dementia services for people from Black, Asian and Minority Ethnic and White-British communities: Does a primary care based model contribute to equality in service provision?

This study set out to investigate whether there were disparities in service provision for people from Black, Asian and Minority Ethnic (BAME) communities compared to White British (WB) communities within a primary care led dementia service in the UK. Data were extracted from 30 cases from three BAME (African-Caribbean, South Asian and Chinese) communities who had been referred to a dementia service between April 2016 and December 2017. We then extracted data from 30 WB cases matched for gender, age (within 5 years) and General Practitioner surgery. We compared service provision for both samples around assessment, diagnosis and post-diagnostic support. The primary source of information in the BAME sample was less likely to be recorded as being the main carer and more likely to be an adult child. Cases from both samples were equally likely to have a CT scan. People from BAME communities were less likely to receive a cognitive assessment, and when they did they scored at a lower level. There was no difference between samples for the diagnoses that cases received, but BAME cases were more likely to be assessed as being low rather than medium or high risk. While cases from both samples were equally likely to receive medication, BAME cases were more likely to be seen by a psychiatrist. Significantly more people from the WB sample were recorded as using or being offered more than one form of community support. This study of a primary care-based dementia service suggests that while many areas of service provision showed no evidence of inequality, important differences remain including the time at which people present for assessment and the range of post-diagnostic services which are discussed. Further research is required to establish the likely causes of these disparities.

Nostalgic conversations: The co-production of an intervention package for people living with dementia and their spouse.

OBJECTIVES: Nostalgic memories are more social than other forms of autobiographical recall, often refer to atypical events, express more positive affect and reflect life as meaningful. Recalling a nostalgic (compared to ordinary) memory increases self-esteem, self-growth, meaning in life and social connectedness for people living with dementia. We set two objectives: to work with people living with dementia to develop an intervention based on nostalgia, and to assess whether couples could engage in nostalgic conversations. METHOD: Our research fell into three phases. Initially, we consulted with people living with dementia and with carers to identify the parameters for a nostalgic intervention. From this, we drafted a workbook that contained triggers for nostalgic conversations, which we then took back to the public contributors for refinement. Finally, we trialled the workbook over 5 weeks with six couples, each of which included a person living with dementia. We assessed pre- and post-intervention self-esteem, self-growth, meaning in life and social connectedness for participants with dementia and social connectedness for carers. We then calculated Reliable Change Index scores and established levels of clinically significant change. We also interviewed couples at the end of the intervention to explore its implementation and acceptability. RESULTS: All six couples could identify nostalgic memories, with five couples successfully integrating the nostalgic conversations into their day-to-day lives. A sixth couple found it difficult to engage fully with the intervention, but still considered it useful. All six couples manifested a reliable change in at least one outcome, with one couple showing reliable change across three outcomes. CONCLUSION: The psychological benefits of nostalgia have been robustly demonstrated in laboratory-based studies. This co-production of an intervention that sets nostalgic recall into the context of a conversation has clinical potential but requires further investigation through a larger study.

A preliminary evaluation of a client-centred prompting tool for supporting everyday activities in individuals with mild to moderate levels of cognitive impairment due to dementia.

OBJECTIVES: Technology-based prompting has the potential to support people with dementia to complete multistep tasks in the home. However, these devices can be complex to use. This paper reports a feasibility trial of a personalised touchscreen digital prompter designed for home use.Methodology: A tablet-based prompter suitable for people living with dementia was developed, along with a detailed guidance manual. Carers loaded instructions for completing the task onto the prompter, and the person with dementia then used the tablet independently to complete a task. Eleven couples used the prompter 'out-of-the-box' with no support other than a guidance manual. RESULTS: The majority of participants with dementia could follow the steps on the prompter, and carers were able to breakdown and load tasks onto the prompter. Eight couples used the prompter successfully to complete goals that they had identified in advance. These included preparing simple snacks and using a TV remote control. Successfully achieving goals was associated with more frequent use of the prompting screen on more days, but not higher levels of editing or previewing of tasks. CONCLUSION: The study provides the preliminary evidence that family caregivers can use a touchscreen tablet, software and manual package to identify specific tasks and break these down into steps and that people living with dementia can then follow the prompts to complete the tasks. This potentially represents an important advance in dementia care. Further testing is required to establish efficacy and to identify any factors that impact on outcomes.

A grounded theory analysis of the experiences of carers for people living with dementia from three BAME communities: Balancing the need for support against fears of being diminished.

An estimated 25,000 people of Black, Asian and other Minority Ethnic (BAME) origins live with dementia in UK - a number which is expected to increase sevenfold by 2051. People from many BAME communities experience dementia in a markedly different way to their white British counterparts. For instance diagnosis is more likely to occur at an advanced stage of the illness, while there is a lower take-up of mainstream dementia services. This research study focused on the experiences of caregivers for family and friends living with dementia from South Asian, African Caribbean and Chinese communities in Bristol. Data were collected through interviews with 27 participants and 8 focus groups attended by 76 participants. Additionally, interviews were carried out with 16 paid staff and volunteers working for Voluntary and Community Sector Organisations (VCSOs) that provided services for older people from these three communities. As concepts emerged during data analysis, so these were checked with each community. The grounded theory, 'fear of diminishment' was present across all communities: participants both needed and wanted support, but they were reluctant to accept this if it came at the cost of being diminished as a person. To resolve this dilemma, informants turned to BAME-led VCSOs, which provided ongoing support and advocated on behalf of their members. However, the services provided by these VCSOs varied and reflected differences in the ways in which communities enacted the theory. Given the increasing importance of cultural diversity within dementia care, this study has important implications for communities across the UK and elsewhere, and points towards the need for sustainable and equitable resourcing of dementia care within BAME-led VCSOs.

A small-scale study comparing the impact of psycho-education and exploratory psychotherapy groups on newcomers to a group for people with dementia.

BACKGROUND: The importance of providing emotional support to people newly diagnosed as having dementia is now widely recognised. However, the evidence base for this work is limited, so that it is difficult to draw conclusions either about whether this form of work is effective or which form of intervention might be most suitable for people with dementia. OBJECTIVES: This study compared the effectiveness of exploratory psychotherapy and psycho-educational group interventions for new group members. METHODOLOGY: Participants had received a diagnosis of Dementia of the Alzheimer's type or a similar form of dementia and had a mild level of cognitive impairment. Interventions occurred in ten, weekly sessions with participants attending either a psychotherapy or a psycho-educational group, each of which were facilitated by the same team of clinicians, and had the same amount of therapist contact. Data relating to levels of mood was collected at the start and at the end of the group intervention from eight participants in each arm of the study. Data collection occurred independently from the intervention by a researcher who was blind to the form of intervention. RESULTS: There was a significant interaction between mode of therapy and levels of depression and a borderline significant interaction between therapy type and levels of anxiety. However, once the low affect level of participants in the psycho-educational groups was controlled for, differences between the interventions were non-significant. DISCUSSION: Although the results that can be drawn from this study are limited, nevertheless it supports previous research indicating that a 10-week group psychotherapy intervention can be effective in reducing levels of depression for people with a mild level of dementia.

Protected engagement time on older adult mental health wards: A thematic analysis of the views of patients, carers, and staff.

During protected engagement time (PET), ward routines are adjusted so that staff can spend time together with patients without interruption. The aim of PET is to increase staff and patient interaction on wards, and ultimately patient well-being. Although PET has been implemented on inpatient wards within the UK, including older adult wards, there is no systematic evidence as to how PET is carried out or how it is experienced by staff, patients, and families. Semistructured interviews were conducted with 28 participants (8 patients, 10 family members, and 10 ward staff) from three different wards with PET, and transcriptions were analysed using thematic analysis. Three themes were identified: (i) the patient is at the heart of care; (ii) PET depends on staff; and (iii) tensions in how PET operates. There was support in our sample for the principles of PET and its potential for a positive impact on patient well-being. However, the implementation of PET was identified as challenging, highlighting an existing tension between an individual's needs and the wider needs of patients on the ward as a whole. The impact of PET was generally described as being dependent on how PET was organized and the level of staff commitment to PET. Participants emphasized that if PET is to be successful, then it should be a fluid process that fits in with the local context.