Dementia and hearing loss: A narrative review

Dementia and hearing loss are highly prevalent in older people. Both these conditions together increase complexities in all aspects of an individual’s care and management plan. There has been increasing research interest about the relationship between dementia and hearing loss in recent years. In this review we discuss the relationship between hearing loss and dementia, including hearing loss as a risk factor for dementia; the effects of dementia with hearing loss on affected persons’ quality of life and the care they receive; screening and available interventions; and opportunities for prevention. We also discuss dementia and hearing loss in the care home setting, as the majority of residents have either, or indeed both, dementia and/or hearing loss. Several mechanisms have been suggested for how hearing loss and dementia may be related but the evidence for how these may operate together is still unclear. Similarly, although it is to be hoped that the active identification and management of hearing problems may help to reduce the future development of cognitive impairment, evidence for this is still lacking

"Here everyone is the same" - a qualitative evaluation of participating in a Boccia (indoor bowling) group: innovative practice

This qualitative study explored the impact of a Boccia (modified indoor bowls) group on the lives of people with dementia and their carers. Semi-structured interviews with people with dementia (N=6), carers (N=10) and the group organisers (N=6) analysed using thematic analysis revealed four main themes. ‘The struggle of being a carer’ was relieved by participating in the group and benefiting from the caring support and social aspects of “This group is a family”. “The unique nature of Boccia” helped it to provide physical and mental stimulation as well as being an inclusive and enjoyable group. These aspects contributed to many participants describing the group as a Dementia friendly environment where “Here everyone is the same:” treated as equals, without feeling hindered or defined by dementia. Boccia appears an exciting initiative but further research is needed to see if these findings can be replicated with other groups

Dementia and meaningful activity

Aim: This thesis presents nine of my published papers based around a common theme of meaningful activity in dementia. The papers and the accompanying text will explore the concept of meaningful activity and whether it is relevant to dementia; the use of meaningful activities for people living with dementia in various settings; and the experiences of people with dementia participating in such activities. Background: An overview of the published literature regarding four areas of meaningful activity is presented in Chapter 2. These areas, which reflect topics of the included papers, comprise: access to the outdoors; exercise and other group activities; dementia and the arts; and involving people with dementia in mindful design. Chapter 3 is a critical discussion of the concept of meaningful activity. Meaningful activity is a concept with considerable limitations but remains useful in psychosocial research and practice in dementia. Methods: The methods of each study are described in each of the nine included papers but the overall methodological approach is summarised in Chapter 4. In general, the approach is exploratory and qualitative, and places a strong emphasis on the voices and experiences of people living with dementia. Results: As with the methods, the detailed results are included in each study. Chapter 5 provides an overall summary of the results, and combines results from those papers with similar methods. Altogether, over 100 people living with dementia have contributed to the data, either as study participants or in the process of co-design. The nine papers included appear in Chapter 6, with the abstract as published and a commentary on each one. The full texts of the papers are reproduced in Appendices 2 to 10. The nine papers fall into four broad groups: Paper 1 is about outdoor access; Papers 2 to 5 concern exercise and other group activities; Paper 6 to 8 are studies of arts interventions; and Paper 9 is about design for and with people living with the dementia. The individual papers are as follows: Paper 1 is an invited editorial that argues for improved access to outdoor space for all people with dementia, whether resident in their own homes or in care homes. This argument is based upon a human rights perspective. Paper 2 reports a qualitative study of a community based sports and exercise group for men with young onset dementia. Four main themes were identified, with enjoyment, anticipation and the creation of a ‘dementia-free’ environment, set alongside less positive themes of loss and lack of other appropriate resources. Paper 3 is a qualitative study of using multisensory boxes as the basis for a storytelling group intervention for care home residents with dementia. The themes generated in our analysis included engagement, curiosity about the contents of the boxes, and the opportunity for self-expression. Paper 4 describes a qualitative study of a Boccia (modified indoor bowls) group for people with dementia. Four main themes were identified, three of them positive: the family nature of the group, the characteristics of Boccia as a sport, and the sense of equality and freedom from dementia in the group. Paper 5, another qualitative study, investigated a weekly swimming group for people with dementia. Themes included the impact of dementia, the pleasure of swimming, and how the group created a sense of equality or being ‘all in the same boat’. Paper 6 reports two case studies of arts interventions for care home residents that were provided as part of a larger arts project. The case studies explored the perceptions of the artists and care home staff and draws attention to the crucial role of care home activity co-ordinators. Paper 7 includes more than one individual study (focus groups and case study) that were used to create a taxonomy of arts interventions in dementia. The paper presents a striking visual model with twelve descriptive dimensions, thus providing a common language for description and future research. Paper 8 is a single case study of a person with advanced dementia and her interaction with a visual art installation in an exhibition, using video analysis. The study was an exploration of capturing the in the moment experience of the participant but also as to whether a person with profound disability could engage with visual art. Paper 9 is a report on a European programme of work around mindful design with and for people with dementia, which provides a background to the work, a description of the models and the approach to co-design that were used, and concludes with a series of design guidelines for different stakeholder groups. Discussion and Conclusions: The main findings and the contribution of the work as a whole are presented and discussed in the final chapter of the thesis. Collectively, the papers present several positive findings. Participation in groups providing exercise or stimulating activities is enjoyed and valued by those taking part. Under the right circumstances, such activities have powerful effects, such as levelling things up for people with dementia, creating equality between group members, and reducing the sense of ‘us and them’ (that is, people with and without dementia). These effects act to enhance the dignity and confidence of participants and reduce the stigma of dementia. In addition, establishing meaningful collaboration with people with lived experience of dementia requires attention to several elements: how and why people are approached initially; how the invitation to participate is framed; observing relevant rights, permissions and consent; creating an equitable and inclusive working environment; and accessible communication and participatory activities that include everyone. There is much common ground across the nine papers, which may be described as an overriding theme of rights, empowerment, liberty and activity, all of which aim at enjoyment and social interaction. The studies included in this thesis have certain strengths, which include the exploratory nature of the studies, the collection of data in naturalistic surroundings, and the emphasis on recording the experiences of the participants with dementia. Possible limitations include the relatively small sample sizes and lack of quantitative data, though it is argued that these are not really required in exploratory studies looking at people’s personal experiences. As a body of work, the nine papers in this thesis make a significant contribution to research and scholarship in the area of meaningful activity in dementia. Future research will need to explore the mechanisms by which interventions ‘work’ and to continue exploration of studying in the moment experiences. Involvement of people living with dementia is essential in order to design products or activities that they may value, and in order to ascertain that allegedly meaningful activities actually do have personal significance

Palliative care in dementia: does it work?

The topic of palliative care in dementia has attracted increasing interest in recent years. Entering palliative+care+dementia into PubMed yields only 10 papers before 1990, the first from 1982. In contrast, there have been 100 or so papers in each of the last three years. The question we have set in this editorial is deliberately ambiguous. ‘Does it work?’ can be either a question about effectiveness in practice or a question about the concept of palliative care as applied to dementia and, in this regard, it’s a question as to how palliative care fits in with the journey of dementia and the other models of care that may be relevant. Conceptual In relation to dementia, palliative care could cover a huge range from the whole course of dementia from diagnosis onwards to a much narrower focus on end-of-life care. And maybe there are points in between, e.g. as a person passes from ‘living well with dementia’ to the next stage, which might be regarded as that of inexorable decline. Van der Steen et al [1] have attempted to create clearer boundaries for what we mean by ‘palliative care’ in dementia. They used a Delphi process to generate a set of core domains and then tested these on a wider international panel of experts. Most of these domains achieved consensus: the two which did not were about the importance of palliative care in relation to the stage of dementia and to provision of artificial nutrition and hydration. The first of these concerns reflected disagreement as to whether all dementia care should be relabelled as palliative care [2]. Another issue for palliative dementia care is that it has to compete with other terms that belong to other frameworks. Palliative care has a fairly simple conceptual basis (we allege) in that in the absence of a cure, health professionals should concentrate on relieving troublesome symptoms and avoiding unnecessary, potentially harmful, interventions. It has noble Classical roots – primum non nocere – that probably go back to Hippocrates. It is closely associated with ‘end of life care’ or ‘care of the dying’ which has similar sentiments but is perhaps more closely associated with the relief of pain and bringing comfort and solace. End of life care implies a clinical milieu, even if this happens to be the person’s own home. The prevailing paradigm in dementia, however, is person-centred care, which derives from the work of Kitwood and the Bradford group. By contrast to palliative care, this arises from a reaction to the medicalisation of dementia and uses social psychology to draw attention to the perspective of the person with dementia and how the actions of those around them can shape behaviour. This model has been highly attractive for the public, the voluntary sector, and workers and academics with a psychosocial bent. It is clear how person-centred care is applicable across the whole pathway of dementia. It has enabled the voice of people with dementia to be heard, so that we now have the remarkable growth of a disability movement within dementia, with bloggers, activists, and groups such as Dementia Alliance International (http://www.dementiaallianceinternational.org/). Expect further changes in the future as people living with dementia demand their rights, equality and full citizenship. Empirical Universal acceptance of palliative care in dementia would be easier if there was good research evidence that it delivers better outcomes than other forms of care. This is more difficult to test than it appears at first sight, for at least two good reasons. The first of these is that, if we take the view that all dementia care is palliative care, any trial of palliative care might need to be across the whole pathway of dementia. This is unfeasible given the length of time that such a trial would have to run, not to mention some of the methodological issues as to what outcomes are desirable and at what points in the course of the dementia they should be ascertained. The second problem is that it is customary in studies of psychosocial interventions in dementia to compare the treatment of interest with ‘usual care’. However, this is difficult too. Is palliative care an ‘intervention’? And what is ‘usual care’? And does it not already have a palliative quality? Thus, it is probably impossible to test empirically whether palliative care ‘works’ as a form of dementia care across the whole pathway. In practice, we duck this question by talking about a palliative care approach but it isn’t established whether this adds anything to what we already do. Palliative care can be tested if specific aspects of management, usually towards the end of life, are being evaluated. For example, it is perfectly possible to compare the outcomes of artificial nutrition with not providing it, in terms of survival, pain, quality of life and so on (see Sampson et al [3] for a review). Although, note that either arm of this trial can be regarded as palliative care so, even if one arm does better, this doesn’t tell us if palliative care is effective. It is simply a judgement between two palliative care options. Conclusion Applying the term palliative care in dementia has some attractions and this accounts for the expansion of recent interest. However, it is a slippery concept to use as there is no agreement as to when it is best applied to dementia and there is no evidence that any thus-labelled intervention has improved outcomes. Furthermore, this may not even be an empirical question, in which case it is either a moral question (‘how do we wish to end our lives?’) or one of popular taste. So far, the discourse has been confined to professionals and experts and the voice of people with dementia is missing. ‘Palliative’ may be too clinical a word for their taste

Ageing in forensic psychiatric secure settings: the views of members of staff

Background: Although the prevalence of older patients in forensic psychiatric services is increasing, research around service provision for this population is very limited. We aimed to gather the views of members of staff on how well secure services are meeting the challenges of an ageing population.Methods: Three focus groups were carried out with 13 members of staff working with older patients in secure services. A topic guide, based on the research team’s previous research, guided the sessions. The focus groups were audio-recorded, transcribed and analysed through thematic analysis.Results: Two themes were identified: (1) Identifying patients’ needs, which focused on how promptly any emerging issues in the older patients are identified and reported; (2) addressing patients’ needs, which focused on how the unique needs of the older patients are addressed, once established.Conclusions: There are unique age-related issues that may have an impact on the older patients’ opportunities for recovery, including a lack of specialist training for members of staff, prolonged stay in secure care and a limited number of age-relevant activities. Far from optimal, provision requires improvement through the active involvement of the primary stakeholders

Ageing in forensic psychiatric secure settings: the voice of older patients

Older patients account for around 20% of the population in secure forensic psychiatric services in the UK. However, little qualitative research has investigated the experience of ageing in secure settings. This study aimed to gather the individual views of a sample of patients over 50 years old in the UK at different levels of security. Fifteen participants were selected and underwent one-on-one qualitative interviews. The interviews were analysed through thematic analysis, which generated seven themes: Self-agency, activities, social life, practical matters, recovery, physical health and service improvement. Study findings highlighted the complexity of ageing in secure settings. Despite the positive feedback reported in aspects such as physical health care, education opportunities, staff and support of religious practices, participants experienced added barriers to recovery, caused by social isolation/withdrawal and activities/treatment that did not respond to their complex age-related needs, generating poor motivation to engage. Our findings call for the development/implementation of programmes tailored to the unique needs of older patients. This process requires an active involvement of the primary stakeholders and further patient-centred research

The characteristics and needs of older forensic psychiatric patients: a cross-sectional study in secure units within one UK regional service

Although the number of older patients in forensic psychiatric settings is increasing, there is limited information around their sociodemographic characteristics, needs and cognitive abilities. This cross-sectional study focuses on patients aged ≥50 years in three (high, medium and low) secure forensic psychiatric services in England. The study comprises: 1. Analysis of sociodemographic characteristics of all patients (n = 94) in the services; 2. Analysis of the clinical notes and administration of needs and cognitive assessments to a subsample of patients (n = 41). The main outcomes include: sociodemographic characteristics, data on residency, risk, violence, mental and physical health, cognitive ability and individual needs. Data analysis is carried out through descriptive tests and correlation and inferential analyses of outcomes. Results evidence that most patients are White-British single males aged 50–54 years and 88% have at least one physical health condition. A quarter of the patients has cognitive impairment. The most common psychiatric disorder is Personality Disorder (60%); comorbid psychiatric disorders are prevalent (54%). Length of stay averages 6+ years and is longest in high security. Patients’ needs are mostly met. The least met needs are social opportunities. Future comparative research against younger populations could give better context to research findings from this study

Dementia and meaningful activity

Aim: This thesis presents nine of my published papers based around a common theme of meaningful activity in dementia. The papers and the accompanying text will explore the concept of meaningful activity and whether it is relevant to dementia; the use of meaningful activities for people living with dementia in various settings; and the experiences of people with dementia participating in such activities. Background: An overview of the published literature regarding four areas of meaningful activity is presented in Chapter 2. These areas, which reflect topics of the included papers, comprise: access to the outdoors; exercise and other group activities; dementia and the arts; and involving people with dementia in mindful design. Chapter 3 is a critical discussion of the concept of meaningful activity. Meaningful activity is a concept with considerable limitations but remains useful in psychosocial research and practice in dementia. Methods: The methods of each study are described in each of the nine included papers but the overall methodological approach is summarised in Chapter 4. In general, the approach is exploratory and qualitative, and places a strong emphasis on the voices and experiences of people living with dementia. Results: As with the methods, the detailed results are included in each study. Chapter 5 provides an overall summary of the results, and combines results from those papers with similar methods. Altogether, over 100 people living with dementia have contributed to the data, either as study participants or in the process of co-design. The nine papers included appear in Chapter 6, with the abstract as published and a commentary on each one. The full texts of the papers are reproduced in Appendices 2 to 10. The nine papers fall into four broad groups: Paper 1 is about outdoor access; Papers 2 to 5 concern exercise and other group activities; Paper 6 to 8 are studies of arts interventions; and Paper 9 is about design for and with people living with the dementia. The individual papers are as follows: Paper 1 is an invited editorial that argues for improved access to outdoor space for all people with dementia, whether resident in their own homes or in care homes. This argument is based upon a human rights perspective. Paper 2 reports a qualitative study of a community based sports and exercise group for men with young onset dementia. Four main themes were identified, with enjoyment, anticipation and the creation of a ‘dementia-free’ environment, set alongside less positive themes of loss and lack of other appropriate resources. Paper 3 is a qualitative study of using multisensory boxes as the basis for a storytelling group intervention for care home residents with dementia. The themes generated in our analysis included engagement, curiosity about the contents of the boxes, and the opportunity for self-expression. Paper 4 describes a qualitative study of a Boccia (modified indoor bowls) group for people with dementia. Four main themes were identified, three of them positive: the family nature of the group, the characteristics of Boccia as a sport, and the sense of equality and freedom from dementia in the group. Paper 5, another qualitative study, investigated a weekly swimming group for people with dementia. Themes included the impact of dementia, the pleasure of swimming, and how the group created a sense of equality or being ‘all in the same boat’. Paper 6 reports two case studies of arts interventions for care home residents that were provided as part of a larger arts project. The case studies explored the perceptions of the artists and care home staff and draws attention to the crucial role of care home activity co-ordinators. Paper 7 includes more than one individual study (focus groups and case study) that were used to create a taxonomy of arts interventions in dementia. The paper presents a striking visual model with twelve descriptive dimensions, thus providing a common language for description and future research. Paper 8 is a single case study of a person with advanced dementia and her interaction with a visual art installation in an exhibition, using video analysis. The study was an exploration of capturing the in the moment experience of the participant but also as to whether a person with profound disability could engage with visual art. Paper 9 is a report on a European programme of work around mindful design with and for people with dementia, which provides a background to the work, a description of the models and the approach to co-design that were used, and concludes with a series of design guidelines for different stakeholder groups. Discussion and Conclusions: The main findings and the contribution of the work as a whole are presented and discussed in the final chapter of the thesis. Collectively, the papers present several positive findings. Participation in groups providing exercise or stimulating activities is enjoyed and valued by those taking part. Under the right circumstances, such activities have powerful effects, such as levelling things up for people with dementia, creating equality between group members, and reducing the sense of ‘us and them’ (that is, people with and without dementia). These effects act to enhance the dignity and confidence of participants and reduce the stigma of dementia. In addition, establishing meaningful collaboration with people with lived experience of dementia requires attention to several elements: how and why people are approached initially; how the invitation to participate is framed; observing relevant rights, permissions and consent; creating an equitable and inclusive working environment; and accessible communication and participatory activities that include everyone. There is much common ground across the nine papers, which may be described as an overriding theme of rights, empowerment, liberty and activity, all of which aim at enjoyment and social interaction. The studies included in this thesis have certain strengths, which include the exploratory nature of the studies, the collection of data in naturalistic surroundings, and the emphasis on recording the experiences of the participants with dementia. Possible limitations include the relatively small sample sizes and lack of quantitative data, though it is argued that these are not really required in exploratory studies looking at people’s personal experiences. As a body of work, the nine papers in this thesis make a significant contribution to research and scholarship in the area of meaningful activity in dementia. Future research will need to explore the mechanisms by which interventions ‘work’ and to continue exploration of studying in the moment experiences. Involvement of people living with dementia is essential in order to design products or activities that they may value, and in order to ascertain that allegedly meaningful activities actually do have personal significance

Swimming for dementia: an exploratory qualitative study

Swimming is a non-weight bearing form of exercise that can be enjoyable and promote physical fitness. This qualitative study investigated a local group established as part of a national dementia swimming initiative. Semi-structured interviews with people with dementia (N=4), carers or companions (N=4) and the organisers and facilitators of the group (N=6) were analysed using thematic analysis. This revealed four main themes: (1) the pleasure of swimming and its benefits as a form of exercise and for building confidence and empowering participants; (2) the importance of insight and empathy in creating a safe and secure experience; (3) the impact of dementia; and (4) how participants valued being part of a group ‘all in the same boat’. ‘Dementia friendly swimming’ appears to be a valuable form of exercise but it requires considerable preparation and support to make it happen