May 25, 2017

What I read this week ..Michelle from the Alzheimer's NSW library

*email to borrow resources
 bfn Michelle 

When your parent becomes your child : a journey of faith through my mother's dementia 

available in 

  • book
  • CD and 
  • downloadable audio book

by Ken Abraham

This is a very different book to what i usually read - but i found it in formative from both a carers perspective and in terms of practical information about dementia's effect on an elderly person. 

Ken is a devoted and religious son and he makes the difficult decisions in a loving but practical way.

You will learn about the symptoms that pointed to dementia but went un-diagnosed and the behaviours that were not typical of his mother but of the disease.

He seemed to find the strength to love and care for his mother, spend time with her, feel his feelings but also to learn from the ordeal.

I listened to it on CD in the car and though it was sad I couldn’t wait to get back into the car and find out what happened next and see how he coped with it.

The book takes you from the early stages to the end stage and it is wonderful to share this journey with him and his family.

 *The book would be interesting to those who are caring for a parent and those interested in dementia and spirituality and pastoral care.

from the cover- 
As he chronicles his own mother's degenerative condition, New York Times best-selling writer Ken Abraham educates while offering inspiration to help readers cope with and manage their family circumstances. 

With humor and spiritual reminders, Abraham encourages readers through often-difficult responsibilities. And though in most cases patients will not recover this side of heaven, he suggests many practical things that families can do to make the experience safer, kinder, and more endurable for everyone involved.

May 24, 2017

American Journal of Alzheimer's Disease & Other Dementias

Topics include:

  • Impact of Dysphagia on Hospital Outcomes Among Patients With Dementia

  • Help  for Care Providers Communicate More Effectively With Persons Having Dementia Living in Long-Term Care Homes

  • Living Alone With Cognitive Impairment -Findings From the National Health and Aging Trends Study

  • A Novel Audiovisual Care Consultation for Caregivers

  • Marital Status and Persons With Dementia in Assisted Living -An Exploration of Length of Stay

  • Relationship Between “What We Believe” and “How We Care” Among Daughters Caring for a Parent With Dementia .. daughters’ belief that their parent can control dementia-related symptoms was associated with more relationship conflict - Educating caregivers about parental behaviors and examining factors underlying caregiver interpretations of these behaviors hold promise for reducing caregiver stress.

  • Tool for Screening Visual Acuity in Older Individuals With Dementia

  • Roles of Communication Problems and Communication Strategies on Resident-Related Role Demand and Role Satisfaction

To receive the full text of this article please email
Kind regards Michelle

Table of Contents
Volume 32, Issue 1,
Current Topics in Research

A Nationwide Study of the Impact of Dysphagia on Hospital Outcomes Among Patients With Dementia
Suchitra Paranji et al.
To assess the impact of dysphagia on clinical and operational outcomes in hospitalized patients with dementia.
Dysphagia is a significant predictor of worse clinical and operational outcomes including a 38% longer LOS and a 30% increase in charge per case among hospitalized patients with dementia. Although these findings may not be surprising, this new evidence might bring heightened awareness for the need to more thoughtfully support patients with dementia and dysphagia who are hospitalized.
Keywords  dementia, dysphagia, resource utilization, NIS, cost
pp. 12–21

Precuneus Structure Changes in Amnestic Mild Cognitive Impairment
Robert Haussmann et al
The d-mannuronic acid (M2000) is a novel nonsteroidal anti-inflammatory drug that has immunosuppressive effects together with antioxidant property. M2000 has shown a notable efficacy in experimental models of multiple sclerosis, rheumatoid arthritis, and nephrotic syndrome. In this work, the effect of M2000 on the treatment of Alzheimer’s disease (AD) was performed by Morris water maze experiment, and the immunological assessments were carried out by Western blot, apoptosis (procaspase-3, Bax/Bcl2, P53), enzymatic (superoxide dismutase [SOD]), and nonenzymatic oxidative stress (malondialdehyde [MDA]) tests. We found that pretreatment of AD in the rat model by M2000 had a potent efficacy on rat behavior and also it led to a significant inhibition of amyloid plaque production. Moreover, our data showed that M2000 can reduce the amount of Bax/Bcl2, P53, MDA, and SOD, as well as it normalized the level of procaspase-3. Our results suggest M2000 is a potential therapeutic agent for the treatment of AD.
; pp. 22–26

Association of GWAS Top Genes With Late-Onset Alzheimer’s Disease in Colombian Population
Diana Jennifer Moreno et al.
Patients with amnestic mild cognitive impairment (aMCI) are at risk for developing Alzheimer’s disease. Due to their prominent memory impairment, structural magnetic resonance imaging (MRI) often focuses on the hippocampal region. However, recent positron-emission tomography data suggest that within a network of frontal and temporal changes, patients with aMCI show metabolic alterations in the precuneus, a key region for higher cognitive functions. Using high-resolution MRI and whole-brain cortical thickness analyses in 28 patients with aMCI and 25 healthy individuals, we wanted to investigate whether structural changes in the precuneus would be associated with cortical thickness reductions in frontal and temporal brain regions in patients with aMCI. In contrast to healthy people, patients with aMCI showed an association of cortical thinning in the precuneus with predominantly left-hemispheric thickness reductions in medial temporal and frontal cortices. Our data highlight structural neuronal network characteristics among patients with aMCI.
Keywords  mild cognitive impairment, structural MRI, precuneus, cortical thickness
; pp. 27–35

Validity of the Georgian Montreal Cognitive Assessment for the Screening of Mild Cognitive Impairment and Dementia
Marina Janelidze et al.
Montreal Cognitive Assessment (MoCA) test has been shown to be a reliable tool to detect mild cognitive impairment (MCI), however, no Georgian language version exists. The goal of this study is to determine the validity, reliability, and accuracy of Georgian version of MoCA in the evaluation of amnestic MCI (aMCI) and Alzheimer’s disease (AD). Montreal Cognitive Assessment was translated into Georgian language and was administered to healthy participants (HP) and patients with aMCI and AD. We studied 46 HS, 20 patients with aMCI, and 20 patients with AD. There was significant difference in MoCA scores between HP, patients with aMCI, and patients with AD (P = 0.04). The area under the receiver operating characteristic curve for the aMCI and AD groups by MoCA was 0.88 and 0.95, respectively, compared to 0.43 and 0.67 by Mini-Mental State Examination (MMSE). The Georgian version of MoCA is a valid, reliable, and sensitive screening tool to detect aMCI and AD in Georgian-speaking population and is superior to MMSE.
; pp. 36–40

Can We Help Care Providers Communicate More Effectively With Persons Having Dementia Living in Long-Term Care Homes?
Katherine S. McGilton et al.

Effective communication between residents with dementia and care providers in long-term care homes (LTCHs) is essential to resident-centered care.
To determine the effects of a communication intervention on residents’ quality of life (QOL) and care, as well as care providers’ perceived knowledge, mood, and burden.
The intervention included (1) individualized communication plans, (2) a dementia care workshop, and (3) a care provider support system. Pre- and postintervention scores were compared to evaluate the effects of the intervention. A total of 12 residents and 20 care providers in an LTCH participated in the feasibility study.
The rate of care providers’ adherence to the communication plans was 91%. Postintervention, residents experienced a significant increase in overall QOL. Care providers had significant improvement in mood and perceived reduced burden.
The results suggest that the communication intervention demonstrates preliminary evidence of positive effects on residents’ QOL and care providers’ mood and burden.; pp. 41–50
Urinary Incontinence in Alzheimer’s Disease - A Population-Based Cohort Study in Taiwan
Hsiang-Ying Lee et al.
Urinary incontinence (UI) is more prevalent in the elderly populations with dementia than without dementia, and Alzheimer’s disease (AD) is the most common cause of dementia. Urinary incontinence may complicate AD morbidity and mortality. Therefore, this study aimed to evaluate the prevalence and annual incidence and determine the risk possibility of UI, which is the main type of incontinence in patients with AD in Taiwan.
The present results suggest that the risk of UI is higher in patients with AD than in the general population.
pp. 51–55

Current Topics in Care

Living Alone With Cognitive Impairment -Findings From the National Health and Aging Trends Study
Allison K. Gibson et al.
Although most individuals experiencing cognitive impairment (CI) reside with a caregiver, an estimated 800,000 live alone. Such individuals may have an increased risk for injury to self or others through self-neglect as a result of the CI symptoms. While persons living alone with CI have been identified as an important area for needed research, few studies have been able to examine this population due to the challenges of identifying and recruiting study participants. By using the National Health & Aging Trends Study data set, the researchers explored the characteristics to describe this population. The results of this study indicated that the majority of persons living with CI were older, widowed females who were not diagnosed with Alzheimer’s or dementia but tested positive on cognitive screening measures. Further, the majority of persons living alone with CI relied on adult children and paid professionals as the primary care providers.
; pp. 56–62

A Novel Audiovisual Care Consultation for Caregivers
Babak Tousi et al.
Currently, there is not enough time or staff in the physician’s office to provide education about Alzheimer’s disease for newly diagnosed patients and their family members. The Alzheimer’s Association Cleveland Area Chapter has implemented a novel approach for individuals to connect to helpful information about Alzheimer’s disease and related dementias while at the physician’s office. This project is being piloted at two memory assessment clinics of The Cleveland Clinic as a way to give assessment center staff the opportunity to connect families right away with the free support services available at the Association.
; pp. 63–66



Current Topics in Research

In Vivo Effect of a 5-HT7 Receptor Agonist on 5-HT Neurons and GABA Interneurons in the Dorsal Raphe Nuclei of Sham and PD Rats - An Electrophysiological Study
Shuang Wang et al.
The 5-hydroxytryptamine (5-HT; serotonin) neurotransmission is severely affected by the degeneration of nigrostriatal dopaminergic neurons. Here, we report the effects of the systemic administration of the 5-HT7 receptor agonist AS-19. In sham rats, the mean response of the 5-HT neurons in the dorsal raphe nucleus (DRN) to systemic AS-19 was excitatory and the mean response of the γ-aminobutyric acid (GABA) interneurons was inhibitory. In Parkinson disease (PD) rats, the same dose did not affect the 5-HT neurons and only high doses (640 μg/kg intravenous) were able to the increase GABA interneuron activity. These results indicate that DRN 5-HT neurons and GABA interneurons are regulated by the activation of 5-HT7 receptors and that the degeneration of the nigrostriatal pathway leads to decreased responses of these neurons to AS-19, which in turn suggests that the 5-HT7 receptors on 5-HT neurons and GABA interneurons in PD rats are dysfunctional and downregulated.
pp. 73–81

Marital Status and Persons With Dementia in Assisted Living -An Exploration of Length of Stay
Noelle L. Fields et al.
Despite the prevalence of dementia among residents in assisted living (AL), few researchers have focused on the length of stay (LOS) in AL among this population. Little is known about the factors that may contribute to LOS in these settings, particularly for residents with dementia. In the current study, a sub-set of AL residents with dementia (n = 112) was utilized to examine whether marital status was associated with LOS in AL as this has received sparse attention in previous research despite studies suggesting that marital status influences LOS in other health-care and long-term care settings.
The Andersen-Newman behavioral model was used as a conceptual framework for the basis of this study of LOS, marital status, and dementia in AL. We hypothesized that persons with dementia who were married would have longer LOS than unmarried persons with dementia in AL. Cox regression was used to examine the association between marital status and LOS in AL of residents with dementia and whether activities of daily living were related to discharge from AL settings among married and unmarried residents with dementia. Main effects for marital status and the interaction between marital status and mobility with LOS were examined. Study findings provide information related to the psychosocial needs of AL residents with dementia and offer implications for assessing the on-going needs of vulnerable AL residents.
; pp. 82–89

The Relationship Between “What We Believe” and “How We Care” Among Daughters Caring for a Parent With Dementia
Cory K. Chen et al.
This study attempted to better understand factors associated with relationship conflict between daughters and their parents with dementia. We examined data from 77 daughters self-identified as primary caregivers of a parent with dementia to test the hypothesis that daughters’ belief that a parent with dementia can control their symptoms is associated with more conflict, defined as high expressed emotion (EE). Participants completed self-report questionnaires assessing beliefs about parents’ ability to control symptoms, stress, relationship conflict, parent agitation, and cognitive status. Results indicated that greater intensity of daughters’ belief that their parent can control dementia-related symptoms was associated with more relationship conflict or “high EE” (β = 0.57, P < .001). Daughters’ beliefs about parental behavior may contribute to caregiver stress and exacerbate negative behaviors exhibited by individuals with dementia. Educating caregivers about parental behaviors and examining factors underlying caregiver interpretations of these behaviors hold promise for reducing caregiver stress.
; pp. 90–95

Tool for Screening Visual Acuity in Older Individuals With Dementia
Hélène Kergoat et al.
To develop a screening and referral algorithm tool to help identify which older institutionalized individuals with dementia need an eye examination.
The visual acuity (VA) screening test was developed on an iPad retina display. Three optotypes were used (letters, numbers, and tumbling E’s) to determine whether one works best with dementia. The screening VA results and algorithm decision were validated against those obtained by an optometrist performing a complete eye examination.
The results indicate that the tool was successful at identifying older individuals with dementia needing an eye examination.
; pp. 96–100

Diagnostic Validity Comparison Between Criteria Based on CSF Alzheimer’s Disease Biomarkers
Maria Empar Blanco-Cantó et al.
To compare the diagnostic validity of NIA-AA criteria, for AD CSF biomarkers, with our own new criteria.
The inclusion of the ratios in diagnostic criteria increases sensitivity and NPV for the diagnosis of MCI due to AD.
; pp. 101–107
A Path Analysis of Dependence and Quality of Life in Alzheimer’s Disease
Josep Garre-Olmo et al.
To determine the direct and indirect relationships of cognitive, functional, and behavioral factors and other medical comorbidities with the quality of life (QoL) of patients with Alzheimer’s disease (AD) according to the theoretical model of dependence.
Direct and indirect effects exist between clinical indicators, dependence, and QoL.
; pp. 108–115

Roles of Communication Problems and Communication Strategies on Resident-Related Role Demand and Role Satisfaction
Marie Y. Savundranayagam et al.
This study investigated the impact of dementia-related communication difficulties and communication strategies used by staff on resident-related indicators of role demand and role satisfaction. Formal/paid long-term care staff caregivers (N = 109) of residents with dementia completed questionnaires on dementia-related communication difficulties, communication strategies, role demand (ie, residents make unreasonable demands), and role satisfaction (measured by relationship closeness and influence over residents). Three types of communication strategies were included: (a) effective repair strategies, (b) completing actions by oneself, and (c) tuning out or ignoring the resident. Analyses using structural equation modeling revealed that communication problems were positively linked with role demand. Repair strategies were positively linked with relationship closeness and influence over residents. Completing actions by oneself was positively linked to role demand and influence over residents, whereas tuning out was negatively linked with influence over residents. The findings underscore that effective caregiver communication skills are essential in enhancing staff–resident relationships
pp. 116–122

May 23, 2017

books on coping with grief for carers and healthcare professionals - (including workbooks)

These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on 
Or phone 02 98884239

Coping with grief 

An ideal book to give immediately to bereaved people and those in touch with them. This book covers: What is normal grief; anniversaries and special dates; physical reactions; coping with the immediate needs of the bereaved; the funeral; preparatory grief; children and grief; gender differences in grief; bereavement and its possible consequences; sexuality and grief; the support team; self-help and community education. 

Coping with grief and loss: a guide to healing when mourning the death of a loved one
Harvard Medical School
While no words can erase grief, Coping with Grief and Loss can help you navigate this turbulent time.
In its pages, you'll find advice on comforting yourself, commemorating your loved one, and understanding the difference between grief and depression. You'll also find special sections on coping with the loss of a child, parent, or spouse.
Coping with Grief and Loss also includes information on navigating life when a loved one is terminally ill, on end-of-life planning, and on ways to talk about death.

Ambiguous loss : learning to live with unresolved grief

When a loved one dies we mourn our loss. We take comfort in the rituals that mark the passing, and we turn to those around us for support. But what happens when there is no closure, when a family member or a friend who may be still alive is lost to us nonetheless? How, for example, does the mother whose soldier son is missing in action, or the family of an Alzheimer's patient who is suffering from severe dementia, deal with the uncertainty surrounding this kind of loss?
In this sensitive and lucid account, Pauline Boss explains that, all too often, those confronted with such ambiguous loss fluctuate between hope and hopelessness. Suffered too long, these emotions can deaden feeling and make it impossible for people to move on with their lives. Yet the central message of this book is that they can move on. Drawing on her research and clinical experience, Boss suggests strategies that can cushion the pain and help families come to terms with their grief. Her work features the heartening narratives of those who cope with ambiguous loss and manage to leave their sadness behind, including those who have lost family members to divorce, immigration, adoption, chronic mental illness, and brain injury. With its message of hope, this eloquent book offers guidance and understanding to those struggling to regain their lives.

The grief assessment and intervention workbook : a strengths perspective 

Designed for use in social work and counseling courses on grief and loss, grief counseling, and bereavement therapy courses, the text can also serve as a valuable supplemental resource for practice or field courses across multiple disciplines. Using a strengths-perspective approach, the authors explore various theories of grief and delineate several intervention approaches, including developmental and cultural factors that impact the severity of grief reactions. The text also provides several grief assessment instruments used by practitioners, in-depth case scenarios to illustrate key concepts, and hands-on exercises for applying grief assessment and intervention techniques. 

Lessons of loss: a guide to coping

Lessons of Loss provides a compassionate, sophisticated, and practical perspective on human loss and bereavement. Dr. Neimeyer develops a fresh theory that views grieving as a process of meaning reconstruction, an effort to rebuild a sense of self and the world that "makes sense" in light of unwelcome losses in life. Whether it is the loss of a job, the dissolution of a relationship, or the death of a loved one, Lessons of Loss outlines dozens of practical, personal interventions in support of effective grief and recovery.
Learning Objectives
Identify theories as to how loss affects people. 
Identify different ""stage"" theories of loss. 
Identify risk factors of those who have suffered loss. 
Identify appropriate, effective therapies. 
Identify controversial treatments for those suffering from a loss.

Bouncing back : how to overcome setbacks, become resilient, and create a happier life
In this practical book, Brian Babington, a professional counsellor specialising in grief and loss, outlines some approaches to cope with the initial trauma of loss and failure - and to find ways to recover. His approaches are of use to people who have experienced severe loss - such as a death in the family - or other traumatic events such as the breakdown of a relationship or the loss of a job. Brian Babington guides the reader through ways of coping with anxiety and despair, releasing loss, re-energising themselves and realigning their attitudes. He includes over 50 techniques for readers to choose from in creating their own path to recovery.

Bouncing Back provides a simple six-step Resilience Plan to build emotional strength that includes exercise, nutrition, rest, breathing well, creating peace and calm, learning to solve problems and determining new directions. It offers hope and solutions to people experiencing tough times and seeking greater fulfilment. 'We can all overcome adversity by reducing excessive despair,' says Brian Babington, 'and find our own answers by listening compassionately to our inner self. And in the process, the insights we gain from adversity can change us for the better, make us more resilient and lead us to a clearer sense of our life's purpose.'

Counting our losses : reflecting on change, loss, and transition in everyday life

This text is a valuable resource for  dealing with non-death, nonfinite, and ambiguous losses in their lives. It explores adjustment to change, transition, and loss from the perspective of the latest thinking in bereavement theory and research. The specific and unique aspects of different types of loss are discussed, such as infertility, aging, chronic illnesses and degenerative conditions, divorce and separation, immigration, adoption, loss of beliefs, and loss of employment. Harris and the contributing authors consider these from an experiential perspective, rather than a developmental one, in order to focus on the key elements of each loss as it may be experienced at any point in the lifespan. Concepts related to adaptation and coping with loss, such as resilience, hardiness, meaning making and the assumptive world, transcendence, and post traumatic growth are considered as part of the integration of loss into everyday life experience

Helping grieving people : when tears are not enough : a handbook for care providers
The author addresses grief as it affects a variety of relationships and discusses different intervention and support strategies, always cognizant of individual and cultural differences in the expression and treatment of grief. Jeffreys has established a practical approach to preparing grief care providers through three basic tracks. The first track: Heart – calls for self-discovery, freeing oneself of accumulated loss in order to focus all attention on the griever. Second track: Head – emphasizes understanding the complex and dynamic phenomena of human grief. Third track: Hands – stresses the caregiver's actual intervention, and speaks to lay and professional levels of skill, as well as the various approaches for healing available. Accompanying these three motifs, the Handbook discusses the social and cultural contexts of grief as applied to various populations of grievers as well as the underlying psychological basis of human grief.   

Daring Greatly : How the Courage to be Vulnerable Transforms the Way We Live, Love, Parent, and Lead

Every time we are introduced to someone new, try to be creative, or start a difficult conversation, we take a risk. We feel uncertain and exposed. We feel vulnerable. Most of us try to fight those feelings - we strive to appear perfect. In a powerful new vision Dr. Brene Brown challenges everything we think we know about vulnerability, and dispels the widely accepted myth that it's a weakness. She argues that, in truth, vulnerability is strength and when we shut ourselves off from vulnerability - from revealing our true selves - we distance ourselves from the experiences that bring purpose and meaning to our lives. Daring Greatly is the culmination of 12 years of groundbreaking social research, across every area of our lives including home, relationships, work, and parenting. It is an invitation to be courageous; to show up and let ourselves be seen, even when there are no guarantees. This is vulnerability. This is daring greatly.

When caring takes courage

When Caring Takes Courage follows the path of Alzheimer s disease from its onset, what the disease is and how to seek preliminary diagnosis, all the way to hospice care and all that happens in between. The book includes tips to help with everyday challenges such as bathing, toileting, managing medications and dealing with difficult behaviors. Readers will gain access to customizable tools such as: The Alzheimer s and Dementia Symptom Tracker, Alzheimer s Care Needs Calculator, Affording Alzheimer s Care in Today s Economy Worksheet, Alzheimer s at Home Weekly Care Planner and more. When Caring Takes Courage is intended to be USED not just simply READ, striving to serve Alzheimer s and Dementia caregivers as a constant companion on what can, at times, feel like a lonely journey.

Men coping with grief
The primary purpose of Men Coping With Grief is to bring together, in a single publication, a very diverse group of authors who have considerable knowledge to share about the ways men grieve and how their bereavement experiences impact various aspects of their lives. The adjustment process is multidimensional in that grief can affect nearly every aspect of a person's life including emotions, identity, social interactions and relationships, spirituality, intimacy and sexuality, work productivity, health, and even mortality.  Each author offers his or her insights, opinions, personal experiences and supporting evidence to explain what we should know about the ways men grieve, why they grieve in a particular way and how this knowledge might be best applied to assist them.

The reality slap : finding peace and fulfilment when life hurts

The “reality slap” is a rude awakening that creates a gap between what you have and what you want. . 

The bigger the gap, the harder it is to bridge it-but it is possible. 

...offers real-life stories and simple exercises to help readers stop depending on things outside of themselves for validation and well-being and instead work on finding peace and fulfilment within.  Readers learn to find peace and calm in the midst of pain and chaos by using painful emotions to cultivate greater wisdom and compassion. 

The grief assessment and intervention workbook : a strengths perspective 

Designed for use in social work and counseling courses on grief and loss, grief counseling, and bereavement therapy courses, the text can also serve as a valuable supplemental resource for practice or field courses across multiple disciplines. Using a strengths-perspective approach, the authors explore various theories of grief and delineate several intervention approaches, including developmental and cultural factors that impact the severity of grief reactions. The text also provides several grief assessment instruments used by practitioners, in-depth case scenarios to illustrate key concepts, and hands-on exercises for applying grief assessment and intervention techniques. 

Get out of your mind & into your life : the new acceptance & commitment therapy
Get ready to take a different perspective on your problems and your life-and the way you live it. Acceptance and commitment therapy (ACT) is a new, scientifically based psychotherapy that takes a fresh look at why we suffer and even what it means to be mentally healthy. 
As you work through this book, you'll learn to let go of your struggle against pain, assess your values, and then commit to acting in ways that further those values." 
It's not about resisting your emotions; it's about feeling them completely and yet not turning your choices over to them.

Living through loss : a training guide for those supporting people facing loss

This manual is a tried and tested method of training people to counsel and aid others who are suffering loss and bereavement. It features include; an explanation of the learning method and ethical issues, role play exercises to allow trainees to experience common situations and further resources should extra training be desired. The course confronts the fear of mortality, promoting self-awareness and self-nurturing in carers to prepare them for the pain, fear, anxiety and anger of those who have been abused or grieving, and develops the skills which enable the carer to fulfill their task.

Holistic experiences of loss and grief

The aim of this book is to demonstrate a range of practical nursing and medical considerations that can be applied to gerontology from a palliative care perspective and the NurseLink model of holistic care.
Book three of the Passion for Caring series. The aim of this book is to raise the readers awareness of the physical, psychological and social processes of grief and loss, while taking into account different personal, cultural and religious beliefs.

May 18, 2017

The latest journal Dementia – The international journal of social research and practice - for health care professionals

Volume 16, Issue 2, February 2017
Full text articles and books are available to members of Alzheimer’s Australia NSW by emailing

Topics you may be interested in  include;

  • How do people in the early stage of Alzheimer’s disease see their future?

  • Person-centredness in direct care workers caring for residents with dementia: Effects of a psycho-educational intervention

  • Increasing enjoyable activities to treat depression in nursing home residents with dementia: A pilot study

  • Innovative practice: Conversational use of English in bilingual adults with dementia

  • Appreciative Inquiry: An alternative to behaviour management

  • Living with Alzheimer’s: Managing memory loss, identity, and illness

How do people in the early stage of Alzheimer’s disease see their future?
Per Jørgen Langø Kristiansen et al
Older people fear Alzheimer’s disease. Central to the fear of the disease is the dread of the loss of identity or self. The aim of this study is to investigate the thoughts people in an early stage of Alzheimer’s disease have about their future selves, and the consequences these thoughts have for their temporary lives. The concepts of future and self are understood in terms of the concepts ‘possible selves’ and ‘selfhood’. The participants in the study are two men in their early 60 s. The data consist of four individual interviews and 11 facilitated family conversations including two of their next of kin. The data were collected over a two-year period. The data were interpreted using a hermeneutic analysis inspired by Gadamer. The main findings were the efforts made by the participants to live in the present and their worries about a future as ‘living dead’.
Keywords  Alzheimer’s disease, Harré’s theory of selfhood, self, possible selves, hermeneutic
pp. 145–157

Processes of user participation among formal and family caregivers in home-based care for persons with dementia
Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was ‘negotiating participation in decisions’. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients’ legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

Keywords  dementia patient, formal and family caregivers, health policy, home-based care, user participation

Relationship and stage of dementia differences in caregiver perspectives on the meaning of activity
Caregivers of persons living with dementia (PWD) taking cholinesterase inhibitors, who care 3 + h over three days/week, were interviewed. This study uses thematic content analysis to compare responses to the open-ended question “What do you believe getting involved in activities outside the home means for someone with dementia?” in spouse (n = 613) and adult–children (n = 260) caregivers, and across mild (n = 314) and moderate–severe stages (n = 280). For adult–children caregivers, activity participation promotes independence in their parents. Spouses describe activity in the context of their relationship with the PWD, and the experience is framed around their continued social roles as a couple. Mild-stage caregivers report the difficulty and negative outcomes (e.g. frustration, stigma) of engaging in activity, while moderate–severe caregivers discuss activity as preserving abilities in PWD and providing connection to cohort. This may indicate areas for improved activity provision and support for spouse (i.e. emotional) and adult–children (i.e. resources) caregivers across dementia stages.
Keywords  independence, stigma, apathy, social role, anxiety Kaitlyn P Roland et al
pp. 178–191

Person-centredness in direct care workers caring for residents with dementia: Effects of a psycho-educational intervention
Ana Barbosa et al
This study assessed the effects of a psycho-educational intervention on direct care workers' person-centredness during morning care to residents with dementia. A controlled pretest–posttest study was conducted in four aged-care facilities with 56 direct care workers (female, mean age 44.72 ± 9.02). Two experimental facilities received a psycho-educational intervention comprising person-centred care competences and stress management skills; control facilities received an education-only intervention, without stress support. In total, 112 video-recorded morning care sessions were coded using the Global Behaviour Scale. Both groups reported significantly higher scores on eight of 11 items of the Global Behaviour Scale and on the Global Behaviour Scale total score at posttest (F=10.59; p=0.02). Global Behaviour Scale total score improvements were higher for the experimental group, with values close to significance (F=3.90; p=0.054). The findings suggest that a psycho-educational intervention may increase care workers' person-centredness. Further research is needed to explore the long-term sustainability and extent of its benefits on workers and residents.
Keywords  aged-care facilities, behaviour, dementia, direct care workers
pp. 192–203

Increasing enjoyable activities to treat depression in nursing home residents with dementia: A pilot study
Catherine Travers et al
This pilot study aimed to assess the feasibility and acceptability of a behavioral activities intervention (BE-ACTIV) in Australian nursing homes. BE-ACTIV was developed by researchers at the University of Louisville, USA, to improve mood and quality of life (QOL) in nursing home residents with mild to moderate dementia. An eight-week trial was conducted and 10 residents with mild to moderate dementia received the BE-ACTIV intervention while eight residents received a Walking and Talking intervention. Measures of depression (GDS-12R) and QOL (QOL-AD-NH) were administered prior to and following the interventions. Qualitative feedback indicated residents benefited from BE-ACTIV, evident by improved mood, although no statistically significant treatment effect was found. Moreover, the intervention was found to be feasible and acceptable to Australian nursing home staff and our findings highlight the importance of individualizing activities for people with dementia, of which 1:1 staff attention was a key component.
Keywords  dementia, depression, nursing home, intervention study, psychosocial intervention
pp. 204–218

Innovative Practices

The stigma attached isn’t true of real life’: Challenging public perception of dementia through a participatory approach involving people with dementia (Innovative Practice)
Laura Reynolds et al
This paper discusses the potential impact of viewing public performances of an orchestra comprising people with dementia, family members, student volunteers and professional symphony orchestra members in contributing to challenging negative perceptions of dementia. Negative perceptions of dementia abound despite recent policy attempts to challenge the stigma associated with the condition. This paper reports on the findings from the performance element of a music project for people with dementia, known as the BUDI Orchestra, designed to replicate the traditional rehearse and perform cycle of musicians. Data were collected via self-completion questionnaires from audience members (N = 109) at three public performances. The performances exceeded the expectations of the general public, and findings suggest a positive impact on perceptions of dementia, demonstrating the power and potential of participatory approaches showcasing the achievements of those living with dementia when attempting to raise awareness of dementia and challenge negative perceptions.
Keywords  stigma, public perception, orchestra, music, dementia
2016; pp. 219–225

The development of environmental assessment tools to support the creation of dementia friendly care environments: Innovative practice
Sarah Waller et al
The need for more dementia friendly design in hospitals and other care settings is now widely acknowledged. Working with 26 NHS Trusts in England as part of a Department of Health commissioned programme, The King’s Fund developed a set of overarching design principles and an environmental assessment tool for hospital wards in 2012. Following requests from other sectors, additional tools were developed for hospitals, care homes, health centres and housing with care. The tools have proven to be effective in both disseminating the principles of dementia friendly design and in enabling the case to be made for improvements that have a positive effect on patient outcomes and staff morale. This paper reports on the development, use and review of the environmental assessment tools, including further work that is now being taken forward by The Association for Dementia Studies, University of Worcester.
Keywords  dementia friendly, environment, hospital, assessment, tools
pp. 226–232

Innovative practice: Conversational use of English in bilingual adults with dementia
Kristina M Kokorelias et al
Regression to mother tongue is common in those with dementia. In two long-term care facilities, we explored the use of bilinguals’ two languages for five older adults with mild-moderate dementia who have begun to regress to Greek. We also examined the role of Montessori DementiAbility Methods: The Montessori Way-based English language activities in fostering conversational use of English. Over 10 sessions, participants’ vocabulary or grammatical structure in English did not improve. However, four of the five participants were able to maintain a conversation in English for longer periods of time. This study contributes to strategies for optimizing meaningful conversation for bilingual long-term care residents with dementia. Moreover, the data suggest a change in the policy and practice for dementia care so that there are more opportunities for residents to speak English in non-English mother-tongue facilities. Greater attention to the specific language needs of bilinguals in English-dominant settings would also be advisable.
Keywords  activities, Alzheimer’s, communication, dementia, language, long-term-care, Montessori
pp. 233–242

Communication And Respect for people with Dementia: Student learning – A novel practical experience of undergraduate students interacting with people with dementia in care homes (innovative practice)
Julia Helen Wood et al
We designed an educational programme for multiple disciplines to improve healthcare students’ preparedness to work with people with dementia. It consisted of class-based sessions followed by a volunteer experience interacting with persons with dementia in care homes. This paper discusses the value and impact of this innovative experience.
Keywords  communication, education, healthcare students, pre-registration, care homes
pp. 243–248

Appreciative Inquiry: An alternative to behaviour management
Bernard McCarthy et al
Appreciative Inquiry is an approach to organisational change that has been effective and popular around the world for the past two decades. What could it have to offer us as an alternative to traditional ‘behaviour management’? Traditionally, in modern dementia care, we take a psychiatric approach to the range of actions that people engage in when stressed or traumatised by the cognitive, social and psychological losses associated with dementia. We call them symptoms of an illness – Behavioural and Psychological Symptoms of Dementia. Then, we medicate them away because if they are symptoms then medical solutions are called for. We may obtain a better outcome from a different direction. Appreciative Inquiry focuses on an organization as a ‘solution designed in its own time to meet a challenge or satisfy a need of society’. This approach focuses on what is working well and is effective in organisations rather than seeing the organisation as a problem to be solved. In this way, we may approach the individual person as a solution designed in its own time to meet a challenge or satisfy a need. Using the 4Ds of the Appreciative Inquiry approach, this article examines the process of Discovery, Dream, Design and Destiny, as it is applied to a case example of a care situation that usually ends with disruption and distress. By formulating affirmative topic choices, the staff group and individual carers may resolve issues with what people with dementia do or say in a way that is humane and hopeful.
Keywords  appreciative inquiry, behaviour management, BPSD, 4Ds, person-centred
First Published February 25, 2016; pp. 249–253

Book Reviews

Renée L Beard, Living with Alzheimer’s: Managing memory loss, identity, and illness
Simon Burrow This is an interesting and provocative book that takes a medical sociological perspective on Alzheimer’s disease (AD). It contributes significantly to those voices that seek to question the certainty of the diagnosis of AD and mild cognitive impairment (MCI) and the benefits of early diagnosis. The book, which is broad in scope, concerns the medicalisation of aging and memory loss and explores illness narratives through a sociological lens. Beard is particularly interested in the processes that influence how people are transformed into inhabiting “Alzheimer’s identities” through diagnosis and supports. In the latter part of the book, Beard focuses on the part played by the support organisation, the Alzheimer’s Association, in this socialisation process.

The core of the book is informed by observational work and interview data from people attending two diagnostic clinics in the U.S.A. This is a fascinating section. One of the key findings concerns how a diagnosis of MCI is readily conflated in the minds of people receiving the diagnosis of AD and close family members. There are complex factors at play Beard suggests, but it is interesting to note that AD was mentioned by doctors in every observed diagnosis of MCI and Beard describes how people were interpreting MCI within a framework “saturated” with AD. Alzheimer’s identities were not therefore the preserve of people with a confirmed diagnosis of AD but were also experienced by people with MCI who may never actually develop AD. Quite apart from the arguments Beard puts forward on the implications of these accounts with regard to theme of socialisation into AD/illness identities, the observations make one stop and think about the emotional impact of being on the receiving end of clinical processes, such as what are often considered “routine” cognitive testing procedures and receiving the much-feared diagnosis of AD; sometimes delivered in a most casual manner by the medical practitioner.
The book also draws attention to the fact that people interviewed who were diagnosed with MCI or AD were far from passive. People adapted in different ways, and there were clear benefits as well as psychosocial costs to receiving a diagnosis. Beard enters into the broader debates about the nature of AD and whether it can be considered a disease. Not everyone will agree with Beard, but this book contributes intelligent and informed debate on how we conceptualise dementia and AD, how we consider aging and memory, and the impact this has on our attitudes to age and impairment.
This book is a must read for those engaged in dementia studies and will encourage much, important debate.
pp. 254–255

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