Dementia care in the context of primary care reform: an integrative review

Objectives: The purpose of this review was to determine the influence of the growing body of evidence about the attributes of high-performing primary care systems on the literature related to the primary care of people living with dementia.

Methods: In this integrative review, we examined a broad range of published and grey literature (2000–2013) about the primary care of dementia, using a systematic approach set up in advance of the literature search. The review was guided by two questions: What are the evident models of primary care for dementia? How do the models line up with the other attributes of high-performing primary care?

Results: Three models were noted: carved-out, co-managed, and integrative-hub, all informed by different assumptions about the role of primary care in dementia. The models varied in alignment with the attributes of high-performing primary care, although we found very little attention to accessibility, relational continuity or comprehensiveness of care.

Conclusions: We know what we need to pay attention to in building our primary care system – and no population will put the performance of primary care more to the test over the next two decades than the rapidly growing number of people who will be living with complex chronic conditions like dementia. Recent literature around primary care and dementia shows promise in attending to some of the attributes of high-performing primary care, yet much more work is needed if we are to truly leverage the potential value of primary care in addressing the needs of these complex and numerous future patients.     

Remaining hopeful in early-stage dementia: A qualitative study

Objectives: Improving the quality of life for people living with dementia is widely accepted as an important outcome in dementia care services. Positive psychology, the systematic study of strengths, capacities, and personal resources, is one framework for understanding how a person with dementia might achieve this. This study investigated the subjective experience of hope–a construct from the discipline of positive psychology in older people with early-stage dementia.

Method: Ten volunteer participants over the age of 65 years were recruited from a memory clinic in England. Semi-structured interviews were used to explore participants’ hopes, in terms of their personal meaning, their resources, and the potential barriers and facilitators of hope in dementia. Interviews were analyzed using interpretative phenomenological analysis (IPA).

Results: Eight themes were extracted, subsumed under two higher-order themes: ‘live in hope or die in despair’ and ‘keep living and keep living well’. Participants described how their internalized hope-fostering beliefs that were often learned during childhood were challenged by the reality of hope-hindering experiences associated with old age and dementia. A balancing process of re-appraisal enhanced resolution and this sense of stability then allowed them to develop positive attitudes towards common age-related constraints in their health and social circumstances.

Conclusion: The findings offer insight into the existence, nature, and relevance of hope in the lives of people with early-stage dementia. They provide a useful framework for developing hope-fostering strategies in early interventions that aim to assist individuals with dementia to maintain their quality of life.     

Care home design for people with dementia: What do people with dementia and their family carers value?

Objectives: To report on the views of people with dementia who live in care homes and their family carers on aspects of design that are important to them, and discuss these in relation to developing physical care environments that respond to the wishes of people with dementia and their family carers.

Method: Six focus groups were held: two in Northern Ireland and four in Scotland. A total of 40 people participated in the focus groups. Twenty nine people were with dementia (24 female and five male), and 11 were family carers (10 female and one male).

Results: Carers discussed the features of a building they took into account when selecting a care home, and discussed this in relation to ‘bricks and mortar versus people’. Key themes reported by people with dementia and their family carers included how the space in the environment is used, for example, what happens in the building and the presence or absence of certain design features. Outside space and wayfinding aids were identified as positive features of the home, along with a general lack of concern about ensuite provision.

Conclusion: The results demonstrate the complexity of building design as it must provide living space acceptable to people with dementia living there and family members who visit, as well as provide a workable environment for staff. The findings highlight areas that should be considered by care home teams involved in the build of a new home or the redevelopment of an existing care home.     

People with dementia and carer preferences for home support services in early-stage dementia

Objectives: To examine people with dementia and carer preferences for home support attributes in early-stage dementia, building on the paucity of evidence in this area.

Method: Preferences from 44 people with dementia and 103 carers, recruited through memory clinics and an online questionnaire, were assessed with a Discrete Choice Experiment survey, with attributes informed by an evidence synthesis and lay consultation. A conditional logit model was used to estimate preference weights for the attributes within a home support ‘package’.

Results: The most preferred attributes were support with personal feelings and concerns, provided by a trained counsellor at home (coefficient 0.67, p = <0.001) and information on coping with dementia, provided by an experienced worker at home (coefficient 0.59, p = <0.001). However, for people with dementia, opportunities for social and recreational activities were considered the most important (coefficient 0.48, p = <0.001).

Conclusions: These preferences concur with emerging evidence on psychosocial interventions in dementia. Support with personal feelings, information and social engagement are important components. Additionally, knowledge of preferences of people with dementia and their carers can identify other attributes that may be important to effectiveness in ‘living well’ but for which there remains limited evidence.     

Living with dementia: A systematic review of the influence of relationship factors

Introduction: Many people with dementia are enabled to live at home by the support of a close family member, who takes on the role of a carer. Considerable research has investigated the impact of caring for a person who has dementia. In early research, there was a tendency to overlook the experiences of the person with dementia and, in particular, the relationship between the two persons. This has now been corrected by a growing body of research on the relationships between people with dementia and the family members who care for them.

Method: Peer-reviewed publications on the influence of relationship factors in dementia caregiving were reviewed.

Results: The impact of dementia on the quality of relationships is examined, together with the impact of relationship quality on the experience of living with dementia. The different forms that relationships can take in the context of dementia are considered, and an integrative theoretical framework is proposed.

Discussion: A neglect of direct evidence from the person with dementia is identified, and possible ways of combating this are considered. Clinical implications are drawn with regard to supporting the carer, the person with dementia, and their relationship.     

Digging for Dementia: Exploring the experience of community gardening from the perspectives of people with dementia

ABSTRACT

Objectives: The study sought to explore the lived experiences of people with dementia who participate in community-based gardening programmes.

Methods: A collaborative gardening project was conducted over six weeks at a day centre for people with dementia. Six participants were recruited from the centre's attendees. Each session was co-designed by participants. Semi-structured group interviews were conducted each week, and researcher observations were documented. Semi-structured interviews were also conducted with the centre's staff to explore their views and to contextualise gardening participants’ experiences. Data were analysed inductively using thematic analysis. This paper focuses upon three of the study's emergent themes: identity, agency, and community.

Results: The findings revealed that for people with dementia, gardening is not merely a matter of enjoying time outdoors; it is a forum for the articulation of identity and selfhood and expression of agency, and can facilitate the development of new social bonds based upon shared interests, rather than a shared diagnosis.

Conclusion: Gardening-based interventions can offer more than simply facilitating outdoor engagement and promoting social interaction. When conditions are right, gardening can be an effective vehicle for the promotion of social citizenship and expression of selfhood and agency in dementia.     

‘Just Helping’: Children living with a parent with young onset dementia

Objectives: While the consequences of caring for younger people with dementia have been a growing area of research, little is known about the children of these individuals. This study aimed to discover whether children of younger people with dementia can be compared to other young carers, the impact of their caring on mood, burden and resilience and what could promote coping.

Method: In-depth interviews were carried out with 12 participants aged 11–18. A grounded theory methodology was used, supplemented with three quantitative measures.

Results: Four higher order categories were identified focusing on: discovering dementia; developing a new relationship; learning to live with it and going through it together. Few participants showed depressive symptomatology, but more than half showed high levels of burden and most showed moderate levels of resilience. A three-stage process model of adapting to dementia is proposed, with children moving through grief to emotional detachment and increased maturity.

Conclusion: This study has implications for service development in light of the National Dementia Strategy and proposals for whole family approaches for young carers. Whole family working by both dementia and children's services could reduce the burden on children of people with young onset dementia.     

Exploring the need for a new UK occupational therapy intervention for people with dementia and family carers: Community Occupational Therapy in Dementia (COTiD). A focus group study

Objectives: In the Netherlands, Graff et al. found Community Occupational Therapy in Dementia (COTiD) demonstrated benefits to people with dementia and family carers. In this study, focus groups took place with people with dementia and family carers to explore how to make COTiD relevant to the UK context.

Method: Six focus groups (three with people living with dementia (n = 18) and three with family carers (n = 21)) took place. Participants were asked for their impressions of the intervention, the extent to which it could meet their needs, and what modifications were needed. Audio-recordings of the groups were transcribed and analysed.

Results: Three key themes emerged covering ‘loss and living with dementia’, ‘what helped us’, and ‘consistency and continuity’. People with dementia and family carers spoke about the impact of their diagnosis on them and their family and what strategies helped. Issues such as timing, follow-up, and the importance of an early intervention in preventing crises were highlighted. There was some concern over the length of the intervention and the disruption it might cause to current schedules.

Conclusion: Overall, participants were optimistic about COTiD being used in the United Kingdom if it was to be introduced in a flexible and timely manner, incorporating the needs and existing strategies of the person with dementia. These outcomes have led to changes, such as incorporating more flexibility into COTiD, being made to the intervention prior to its implementation in the United Kingdom.     

ICT-based applications to improve social health and social participation in older adults with dementia. A systematic literature review

ABSTRACT

Objectives: Information and communication technologies (ICT) developers, together with dementia experts have created several technological solutions to improve and facilitate social health and social participation and quality of life of older adults living with dementia. However, there is a need to carry out a systematic literature review that focuses on the validity and efficacy of these new technologies assessing their utility to promote ‘social health’ and ‘active ageing’ in people with dementia.

Method: Searches in electronic databases identified 3824 articles of which 6 met the inclusion criteria and were coded according to their methodological approach, sample sizes, type of outcomes and results.

Results: Six papers were identified reporting the use of 10 different interventions with people with dementia. Qualitative studies (four) showed a benefit of the use of technologies to foster social participation in people with dementia. At the same time, barriers to a widespread use of these technologies in this population were identified. A quantitative study and a mixed-method study with quantitative outcomes showed that ICT-based interventions promote more social behaviours than non-technology-based interventions.

Conclusions: In the last years, several technological devices for living independently and fostering social health and social participation in people with dementia have been developed. However, specific outcome measures to assess social health and social participation are needed. Even though the analysed studies provided some evidence-base for the use of technology in this field, there is an urge to develop high quality studies and specific outcome measures.     

Living successfully with aphasia during the first year post-stroke: A longitudinal qualitative study

Background: Studies exploring the concept of living successfully with aphasia have advanced the understanding of positive adaptive factors, which may inform clinical interventions provided to people with aphasia. Adaptation over time has been identified as a critical component of living successfully with aphasia. Yet, the experiences of individuals with aphasia and factors they perceive to influence living successfully over time remain ill-described. Longitudinal research might add an important perspective to existing literature in the area of living successfully with aphasia and provide clarification regarding the needs of people with aphasia over time.

Aims: To describe the insider’s perspective of what is important to living successfully with aphasia and changes that occur throughout the first year post-stroke.

Methods & Procedures: A qualitative, prospective longitudinal design was used. Fifteen participants took part in semistructured interviews at four time points: 3, 6, 9, and 12 months post-stroke. A total of 50 interviews were conducted. Data analysis sought to identify common features or the shared experiences of the participants.

Outcomes & Results: Findings from this study indicated one overarching theme: actively moving forward. This theme described the importance of participants taking positive actions in order to promote living successfully with aphasia across time. Factors relating to perceived communication improvement, engagement in activities, social support, and maintaining positivity were important in facilitating a more successful life with aphasia across time.

Conclusions: Findings from this study suggest a holistic approach to aphasia management is necessary with direct intervention efforts consistent with the broader context of an individual’s everyday life. Speech language pathologists may play a crucial role in the delivery of timely services to ensure that people with aphasia and their families are supported in their endeavours to live successfully with aphasia.     

The impact of community-based arts and health interventions on cognition in people with dementia: a systematic literature review

Objectives: Dementia is a progressive condition, affecting increasing numbers of people, characterised by cognitive decline. The current systematic review aimed to evaluate research pertaining to the impact of arts and health interventions on cognition in people with dementia.

Method: A literature search was conducted utilising PsychInfo, Cochrane Reviews, Web of Science, Medline and British Humanities Index databases. Seventeen studies were included in the review, including those related to literary, performing and visual arts.

Results: The review highlighted this as an emerging area of research with the literature consisting largely of small-scale studies with methodological limitations including lack of control groups and often poorly defined samples. All the studies suggested, however, that arts-based activities had a positive impact on cognitive processes, in particular on attention, stimulation of memories, enhanced communication and engagement with creative activities.

Conclusion: The existent literature suggests that arts activities are helpful interventions within dementia care. A consensus has yet to emerge, however, about the direction for future research including the challenge of measurement and the importance of methodological flexibility. It is suggested that further research address some of these limitations by examining whether the impact of interventions vary depending on cognitive ability and to continue to assess how arts interventions can be of use across the stages of dementia.     

The semantic deficit in dementia: Connectionist approaches to what goes wrong in picture naming

Abstract

This paper addresses two main issues. First, what is the focus (or foci) of the naming deficit in patients with probable Alzheimer's disease? Secondly, how is semantic memory degraded by dementia? This paper will attempt to answer these questions by emphasizing connectionist modelling of semantic and neuropsychological processes. It will be argued that the loss of semantic microfeatures leads to the observed pattern of performance on naming and semantic memory tasks in dementia. These microfeatures may not represent linguistically simple lexical concepts or attributes, but are components of semantic representations that are relatively abstract. It is hypothesized that word meanings are equivalent to semantic attractors across these microfeatures. It is a central theme of this paper that connectionist modelling reveals how apparently disparate phenomena may in fact be related.     

Factors associated with the quality of life of family carers of people with dementia: A systematic review

IntroductionFamily carers of people with dementia are their most important support in practical, personal, and economic terms. Carers are vital to maintaining the quality of life (QOL) of people with dementia. This review aims to identify factors related to the QOL of family carers of people with dementia.MethodsSearches on terms including “carers,” “dementia,” “family,” and “quality of life” in research databases. Findings were synthesized inductively, grouping factors associated with carer QOL into themes.ResultsA total of 909 abstracts were identified. Following screening, lateral searches, and quality appraisal, 41 studies (n = 5539) were included for synthesis. A total of 10 themes were identified: demographics; carer–patient relationship; dementia characteristics; demands of caring; carer health; carer emotional well-being; support received; carer independence; carer self-efficacy; and future.DiscussionThe quality and level of evidence supporting each theme varied. We need further research on what factors predict carer QOL in dementia and how to measure it.     

A systematic review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care

ABSTRACT

Objectives: A comorbid diagnosis of cancer and dementia (cancer–dementia) may have unique implications for patient cancer-related experience. The objectives were to estimate prevalence of cancer–dementia and related experiences of people with dementia, their carers and cancer clinicians including cancer screening, diagnosis, treatment and palliative care.

Method: Databases were searched (CINAHL, Psychinfo, Medline, Embase, BNI) using key terms such as dementia, cancer and experience. Inclusion criteria were as follows: (a) English language, (b) published any time until early 2016, (c) diagnosis of cancer–dementia and (d) original articles that assessed prevalence and/or cancer-related experiences including screening, cancer treatment and survival. Due to variations in study design and outcomes, study data were synthesised narratively.

Results: Forty-seven studies were included in the review with a mix of quantitative (n = 44) and qualitative (n = 3) methodologies. Thirty-four studies reported varied cancer–dementia prevalence rates (range 0.2%–45.6%); the others reported reduced likelihood of receiving: cancer screening, cancer staging information, cancer treatment with curative intent and pain management, compared to those with cancer only. The findings indicate poorer cancer-related clinical outcomes including late diagnosis and higher mortality rates in those with cancer–dementia despite greater health service use.

Conclusions: There is a dearth of good-quality evidence investigating the cancer–dementia prevalence and its implications for successful cancer treatment. Findings suggest that dementia is associated with poorer cancer outcomes although the reasons for this are not yet clear. Further research is needed to better understand the impact of cancer–dementia and enable patients, carers and clinicians to make informed cancer-related decisions.     

Individualized formulation-led interventions for analyzing and managing challenging behavior of people with dementia – an integrative review

Objective: Individualized formulation-led interventions offer a promising approach for analyzing and managing challenging behaviors in people with dementia. Little is known about which individualized formulation-led interventions exist and what effects these interventions have on people with dementia and their caregivers. Therefore, the review aims to describe and examine existing interventions and to review their evidence.

Methods: An integrative review of individualized formulation-led interventions for managing challenging behavior in people with dementia was conducted. PUBMED, PsycINFO [EBSCO] and CINAHL [EBSCO] databases were searched between February and April 2014 using key terms related to dementia, challenging behavior and individualized formulation- led interventions. The literature search was limited to German and English publications published from 1995. No limitations were placed on the type of paper, type of study design and stage of disease or setting. 37 relevant papers that met the inclusion criteria were included in this review.

Results: The literature review provided 14 different individualized formulation-led interventions. The effects on people with dementia were diverse, as only half of the studies showed a significant reduction in behaviors compared with the control group. Family caregivers felt less upset about the challenging behavior and more confident in their ability to manage the behavior.

Conclusion: There is a clear need for further research on individualized formulation-led interventions. The results of this review have the potential for developing interventions and for designing methodological robust evaluation studies that take into account the effectiveness of individualized formulation-led interventions on patient and caregiver outcomes.     

Interventions supporting self and identity in people with dementia: A systematic review

Objectives: Recently, researchers have started to focus on ways to support self and identity in people with dementia. The purpose of this review is to discuss the main features of existing interventions aiming to support self and identity in people with dementia, to draw conclusions regarding the effectiveness of these interventions and to highlight the implications for future research.

Method: Systematic review of intervention studies aiming to support self and identity in people with dementia.

Results: Ten studies met the inclusion criteria. All reported some benefits to participants. There were significant methodological limitations and study quality was generally low. The interventions varied in terms of participant characteristics, content and outcome measures, making it difficult to draw overall conclusions about effectiveness.

Conclusions: Interventions aiming to support self and identity in people with dementia are currently in the early stages of development. Firm recommendations cannot be made at this time. Further well-designed studies are required to provide more robust evidence.     

Awareness in people with severe dementia: Review and integration

Objective: Although awareness has been extensively researched in relation to people with dementia, studies have focussed mainly on people who have dementia of mild to moderate severity. Consequently, relatively little is known about awareness in people with severe dementia, and there is no clear conceptual framework to indicate how this should be understood or investigated.

Method: This review presents a conceptual framework for considering awareness in people with moderate to severe dementia which distinguishes fundamental awareness of sensory and perceptual stimuli and three levels of awareness involving more complex cognitive operations, termed ‘on-line monitoring’, ‘evaluative judgement’ and ‘meta-representation’, and provides an integration of the available evidence regarding each level.

Results: Findings indicate that sensory and perceptual awareness can be detected even in people with very severe or end-stage dementia, while some aspects of complex awareness may be retained into the severe stages.

Conclusions: The environmental context and the nature of caregiving interactions influence the extent to which awareness is expressed. There may be scope for enhancing the expression of some aspects of awareness in people with moderate to severe dementia, but this should only be undertaken where it is likely to improve quality of life. Understanding more about awareness is an important element in the provision of high-quality care for people with moderate to severe dementia.     

Relationship continuity and emotional well-being in spouses of people with dementia

Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions.

Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM).

Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = ?.795) and more positive emotional reactions (higher PAC scores; rho = .764).

Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.     

‘Not of this world’: The subjective experience of late-onset psychosis

Objectives: Psychosis with first onset after the age of 60 arising in the absence of dementia or primary affective disorder is thought to affect 2–4% of older people. Up to half will not respond fully to medication.The subjective experience of living with late-onset psychosis (LOP) has not yet been considered and this study represents a preliminary attempt to explore the subjective experience and psychological features of older people living with LOP.

Method: The study was conducted in Ireland. Seven participants between the ages of 67 and 87 years who met diagnostic criteria for very late-onset schizophrenia-like psychosis were interviewed using a semi-structured interview schedule. Participants spoke about previous life experiences as well as the experience of developing and living with LOP. Interpretative phenomenological analysis was used to identify common themes within their accounts.

Results: Four themes emerged which reflected participants’ subjective experiences of earlier life stages as well as their current experiences of LOP. Three interrelated themes described participants’ experiences of social isolation, a solitary coping style and the experience of the self as ‘different’. A final theme reflected participants’ attempts to explain and find meaning in their psychotic experiences.

Conclusions: Results support the view that the experience of LOP emerges in the context of psychosocial vulnerabilities combined with adversities associated with the experience of ageing.