Caregivers’ beliefs about dementia: findings from the IDEAL study

Abstract

Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL) and caregiving stress.

Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study.

Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline.

Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition.

Conclusion: Healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support.     

A continuing sense of self in the lived experience of dementia

ABSTRACT

Diagnosis with dementia often leads to an overwhelming fear of loss of self, which is assumed in the social discourse about the condition. After my own diagnosis with dementia in 1995, I reflected on this fear from a Christian theological perspective and was nonetheless able to discover a sense of hope. Highlighting what remains in dementia, as seen through the lens of the lived experience, provides a counter-story to the views of outside observers, which have dominated the literature to date. Although people with dementia experience a change in their cognitive sense of self, there are still important aspects of self that remain, which are: a sense of being an embodied self, in relationships with others and with God, and being able to find meaning in the present moment. By demonstrating that people living with dementia have a continuing sense of self, the aim is to prompt improved pastoral care and ministry.     

Normality in medicine: an empirical elucidation

Introduction

Dementia diseases, especially Alzheimer’s disease (AD), are of considerable importance in terms of social policy and health economics. Moreover, against the background of the current Karlsruhe judgement on the legalisation of assisted suicide, there are also questions to be asked about medical humanities in AD.

Methodology

Relevant literature on complementary forms of therapy and prognosis was included and discussed.

Results

Creative sociotherapeutic approaches (art, music, dance) and validating psychotherapeutic approaches show promise for suitability and efficiency in the treatment of dementia, but in some cases still need to be scientifically tested. Biomarker-based early diagnosis of dementia diseases is increasingly becoming a subject of debate against the background of the Karlsruhe ruling.

Discussion

Needs-oriented and resource-enhancing approaches can make a significant contribution to improving the quality of life of people with dementia. The discussion on the issue of “assisted suicide” should include questions of the dignity and value of a life with dementia.

Outlook

The integrative dementia therapy model can be complemented by a religion- and spirituality-based approach. Appropriate forms of psychotherapy should be scientifically evaluated.

     

Judgments of blame and forgiveness: A comparison of young adults,older adults,and older adults with dementia

IntroductionAlzheimer's disease may modify moral judgment.ObjectiveIn two studies, we assessed the impact of dementia on blame and forgiveness. Study 1 compared the ways in which young adults, older adults, and older adults with dementia cognitively integrated two factors. Study 2 assessed the number of different factors that older adults with dementia were able to integrate during these moral judgments.MethodThe participants recorded their moral judgements in a blame task and in a forgiveness task. In study 1, the two questionnaires contained scenarios built from the combination of two factors. In study 2, the participants were confronted with the same tasks under three different conditions with scenarios that combined three, four or five factors.ResultsThe data from study 1 showed that the older adults with dementia did not combine the two factors in the same way as young adults did: the combination depended on the type of moral judgment. Study 2 revealed differences in moral judgment between older adults with dementia and adults without dementia in all tasks (i.e. with three, four or five factors combined).ConclusionDementia has an impact on moral judgments. Moral judgment among people with dementia is both task- and condition-dependant.     

Supporting the spiritual needs of people with dementia in residential aged care

ABSTRACT

Objective: To describe how an Australian age care provider, BaptistCare NSW & ACT, has embraced the National Guidelines for Spiritual Care in Aged Care for people with dementia.

Method: A 12-month study was conducted in 19 Baptistcare residential homes, including 14 dementia units. Data were obtained from selected items of the Person-Centred Environment and Care Assessment Tool using interviews, observation, and document review.

Results: The person-centred approach was instituted in adhering to the Guidelines for people with dementia. Conclusion: The person-centred approach assists in actioning the Guidelines for people with dementia.     

When Words Are No Longer Necessary: The Gift of Ritual

SUMMARY

This study is an exploration of non-verbal forms of communication which have become ritualised, particularly m the care of people with dementia. Rituals, which are culturally determined, may be inclusive or exclusive; they may lose their meaning or send out mixed messages, but m general they uphold the structure of society. There is a strong link between religion and ritual and for people with dementia, ritual may be extremely important m maintaining their sense of belonging within the community of faith. It looks at some of the issues to be addressed when worshipping with people with dementia.     

Cognitive Transformation,Dementia, and the Moral Weight of Advance Directives

Abstract

Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient’s preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to show that the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients.     

Differential Memory Test Sensitivity for Diagnosing Amnestic Mild Cognitive Impairment and Predicting Conversion to Alzheimer's Disease

ABSTRACT

Episodic memory is the first and most severely affected cognitive domain in Alzheimer's disease (AD), and it is also the key early marker in prodromal stages including amnestic mild cognitive impairment (MCI). The relative ability of memory tests to discriminate between MCI and normal aging has not been well characterized. We compared the classification value of widely used verbal memory tests in distinguishing healthy older adults (n = 51) from those with MCI (n = 38). Univariate logistic regression indicated that the total learning score from the California Verbal Learning Test-II (CVLT-II) ranked highest in terms of distinguishing MCI from normal aging (sensitivity = 90.2; specificity = 84.2). Inclusion of the delayed recall condition of a story memory task (i.e., WMS-III Logical Memory, Story A) enhanced the overall accuracy of classification (sensitivity = 92.2; specificity = 94.7). Combining Logical Memory recognition and CVLT-II long delay best predicted progression from MCI to AD over a 4-year period (accurate classification = 87.5%). Learning across multiple trials may provide the most sensitive index for initial diagnosis of MCI, but inclusion of additional variables may enhance overall accuracy and may represent the optimal strategy for identifying individuals most likely to progress to dementia.     

Repeated Exposure to Perceptual Illusion Challenges Reduces Anxiety Sensitivity Cognitive Concerns: Evidence From a Randomized Clinical Trial

BackgroundAnxiety sensitivity cognitive concerns (ASCC), or fear of cognitive dyscontrol sensations, confers risk for anxiety and mood psychopathology. Recent work demonstrated that novel perceptual challenges generated by a head mounted display can elicit fear among those with elevated ASCC. This suggests that interoceptive exposure to perceptual challenges may offer a means to mitigate ASCC. This study was designed to evaluate whether repeated exposure to novel perceptual challenges can reduce ASCC, and if these effects are stronger among those experiencing greater negative emotionality as a proxy for individuals likely to present for treatment.MethodsParticipants with elevated ASCC (N = 57) were randomized to one of three experimental conditions utilizing a head-mounted display. In the rotations condition (n = 20), participants viewed themselves spinning in a circle. In the opposite directions condition (n = 20), participants turned their head while the camera moved in the opposite direction creating dissonance in their visual field. In the control condition (n = 17), participants completed a series of simple arithmetic problems.ResultsParticipants in the rotation condition, relative to control, reported significant reductions in ASCC from pre- to post-exposure and these effects were strongest for those with elevated negative affect. The main effect of the opposite directions exposure on post-treatment ASCC was non-significant, but follow-up analyses revealed that reductions in ASCC were observed among those with elevated negative affectivity.DiscussionPerceptual illusion challenges appear to have utility for reducing ASCC through repeated exposure. There was evidence for the perceptual illusion exercises, particularly the rotations condition, specifically reducing ASCC, making this challenge the first we are aware of that specifically targets ASCC-related concerns.LimitationsAs a proof-of-concept study, the present sample was not recruited for clinically-significant psychopathology, and only a brief follow-up was utilized. Future research should utilize a longer follow-up and test if these exposures mitigate ASCC-relevant psychopathology among clinical samples.     

Differential hemodynamic effects during the provision of active and passive support in the laboratory

Objective: Recent research has pointed to the cardiovascular benefits of providing social support to others in times of stress; however, little is known about what factors influence such benefits.

Design and measures: In a between-groups design, we investigated the possible interaction between intimacy (friend vs. stranger) and support type (active vs. passive) in determining the cardiovascular responses of support providers. Eighty participants had their blood pressure and heart rate monitored while providing either active or passive social support to a friend or a stranger who completed a stress task.

Results: Although there was no interaction effect, a significant main effect showed that those who provided passive support showed larger decreases relative to those in the active support condition. There was no effect of intimacy. Further, these effects withstood adjustment for a number of potential confounds (e.g. sex and body mass index).

Conclusion: It appears that the greatest physiological benefit for social support providers may come from providing passive, rather than active support, regardless of whether the support receiver is a friend or a stranger.     

The psychosocial impact of caregiving in dementia and quality of life: a systematic review and meta-synthesis of qualitative research

ABSTRACT

Objective: A systematic meta-synthesis of qualitative studies was conducted to interpret and synthesise findings from studies investigating the experiences, quality of life, and psychosocial impact of caregiving on adult informal caregivers of people with dementia.

Design: The meta-synthesis was conducted according to the principles of meta-ethnography.

Results: Fourteen studies describing the experiences of 265 informal caregivers were reviewed. The meta-synthesis elicited the following themes: (1) understanding and making sense of the dementia diagnosis, changing symptoms, and the caregiver role; (2) coping strategies, psychological facilitators and rewards of caregiver role; (3) challenges of caring for a person with dementia and their behaviour; (4) caregivers' relationships with care-recipient and other informal caregivers; and (5) caregivers’ experiences of formal support services and material resources.

Conclusion: Our findings highlight the need for a person-centred approach to care planning that also accounts for the needs of the informal caregiver to promote better caregiver well-being and quality of life. Caregivers’ emotional support, coping, resilience, need for information and respite care and adjustment to caregiver identity should be reviewed as part of the care package for the person with dementia.     

Dementia–A Spiritual Journey Towards the Divine: A Personal View of Dementia

SUMMARY

This chapter presents a moving account of one woman's journey into fronto-temporal dementia. Bryden grapples with the difficult issues of loss of self and relationship with God. She examines the significance of memory in the Christian journey, and finally, she proposes ways for relating to her as she moves further into dementia. The strategies suggested uphold her as a fellow member of the Body of Christ, where others may become her memory, and where she can still be nurtured through the love of others and feel God's love through them.     

Do web-based competitions promote physical activity? Randomized controlled trial

ObjectivesIntroducing competitions may inspire positive behaviour change but they tend to be implemented alongside other strategies. Thus, the study examined the effectiveness of a competitive web-based intervention to promote physical activity, disentangled the effects of competition from other behaviour change techniques, and identified underlying mediators.DesignRandomized controlled trial.MethodsPhysically inactive adults living or working in a UK city (n = 281) were recruited. Participants were randomized to one of three web-based conditions: a control group; a group encouraged to self-monitor their steps and who received basic feedback; a group encouraged to self-monitor their steps who received basic feedback plus additional feedback to instigate competition. Participants' physical activity was monitored through pedometers for one-week pre-intervention and for four-weeks during the intervention period. Participants completed the BREQ-2 and measures of intention, planning, goal conflict, goal importance, effort, commitment, perceived behavioural control and self-efficacy pre- and post-intervention.ResultsParticipants in the competition condition increased their steps significantly more than those in the control group with the effect being mediated by increased goal importance, identified motivation and intrinsic motivation. Participants in the competition condition increased their steps more than those in the self-monitoring condition. There was weaker evidence that the self-monitoring group increased their steps more than those in the control condition.ConclusionsSelf-monitoring and feedback can increase physical activity but adding a competitive component, implemented via the web, can boost goal importance, identified motivation and intrinsic motivation that mediate these increases in physical activity.     

Mental Health and Spirituality in Later Life: Pastoral Approaches

SUMMARY

This chapter proposes a perspective on providing pastoral care for people at risk of, or who have mental health problems in later life. Two major areas of mental health, depression and dementia are explored, examining their impact on older people and strategies to identify risk in depression, and signs indicating need for pastoral intervention in depression and/or dementia. The work from two studies that examine issues for meaning of people, the first for older people living independently and the second in residential care, form the basis of the material presented in this chapter. It is maintained that pastoral interventions may greatly improve quality of life for these people, their families and carers.¹     

Time of Day Affects Episodic Memory in Older Adults*

ABSTRACT

The neuropsychological test scores of 2,030 cognitively normal older adults were examined to evaluate performance patterns as they related to time of day (TOD) at which testing was initiated. Multiple regression analyses were used to examine the association of TOD with scores on seven neuropsychological tests used in the clinical evaluation of dementia. Episodic memory performance was significantly related to TOD, while memory span and verbal fluency were not. Best performance occurred during early morning hours and late afternoon; worst performance occurred mid-day (i.e., noon). These findings may have implications for clinical assessment, the design of research on dementia, and the daily functioning of older adults.     

Neuropsychological and neurophysiological effects of strengthening exercise for early dementia: A pilot study

ABSTRACT

Research demonstrates a positive effect of aerobic exercise on cognitive functioning in older adults. Unfortunately, aerobic exercise is often contraindicated for older adults due to cardiovascular and functional limitations. Low-intensity strengthening exercise may offer a practical alternative, but the neuropsychological benefits and potential neurophysiological mechanisms are less well understood. The current study evaluated the effects of a 10-week strengthening exercise intervention on cognitive functioning and EEG in a sample of 13 older adults with early dementia, and 9 normative controls. Results revealed beneficial effects of strengthening exercise on verbal memory coupled with frontal beta and delta power asymmetries and N200 amplitude asymmetry. Results point to increased cognitive efficiency following 10 weeks of strengthening exercise. The findings suggest it is feasible to conduct a strengthening intervention with early dementia patients, and to gather neuropsychological and neurophysiological data to evaluate outcomes. Strengthening exercise may serve as a useful alternative to aerobic exercise.     

Comparing the effects of goal types in a walking session with healthy adults: Preliminary evidence for open goals in physical activity

ObjectivesGoal-setting is one of the most common strategies used to increase physical activity. Current practice is often based on specific, measurable, achievable, realistic, and time-bound (SMART) goals. However, theory and research suggests that this approach may be problematic. Open goals (e.g., “see how well you can do”) have emerged as a possible alternative, but are yet to be tested experimentally in physically active tasks. In a walking-based session, this study aimed to experimentally compare the effects of open, SMART and do-your-best goals with a control condition on distance walked and psychological variables related to engagement.DesignRepeated measures design (mixed model).MethodParticipants (N = 78; M_age = 55.88) were randomly assigned to one of four goal conditions: an open, SMART, or do-your-best goal, or a control condition (“walk at your normal pace”), before completing a baseline and two manipulated attempts of a 6-min walking test.ResultsOpen, SMART, and do-your-best goals achieved greater distance walked, and higher ratings of perceived exertion, than the control across both experimental attempts. Open and SMART goals led to greater enjoyment of the session. However, SMART goals led to higher pressure/tension, while open goals led to higher perceptions of performance and higher interest in repeating the session.ConclusionsThese findings provide preliminary evidence for the efficacy of setting open goals in physical activity, and suggest that they may be more psychologically adaptive to pursue than SMART or do-your-best goals. Implications are discussed, and recommendations are made for future goal-setting research in physical activity.     

Beyond Empathy: Vulnerability,Relationality and Dementia

ABSTRACT

This paper brings together a phenomenological and vulnerability-theoretic approach to dementia. The paper challenges the view that subjects with dementia can simply be understood in terms of diminished cognitive capacities or that they have lost all vestiges of personhood or the capacity for meaningful interaction. Instead, drawing on vulnerability theory and the phenomenological work of Kristin Zeiler and Lisa Käll, an alternative view of persons with dementia is offered that is based on intersubjective and intercorporeal relations and accomplishments. A vulnerability approach to dementia is developed that not only provides the basis for empathetic responses to illnesses such as dementia but also points to the intersubjective constitution of subjects more generally. The argument developed is that the notion of vulnerability designates a form of openness to others and that such openness is a precondition for empathy.