June 27, 2018

Dementia – The international journal of social research and practice - latest issue

*These articles, DVDs and books are available to members of dementia Australia library - if you would like to reserve them please email the Library on nsw.library@dementia.org.au

Volume 17 Issue 4, May 2018
Table of Contents
What are dementia champions and why do we need them?
Margaret Brown  et al.
 pp. 397–400
…Simply put, we need dementia champions to ensure the voices of the person living with dementia, their family and supporters are heard loud and clear in the complex health and social care arena. The knowledge, skills and leadership required of a dementia champion cannot yet be achieved for the whole workforce, even though all practitioners have a professional responsibility to provide excellence in care.

Opinion Piece
 The “Ravel issue” and possible implications
Athanasia Alexoudi et al.
 pp. 401–404
Current research has noted that auditory stimuli via rhythmic cues can enhance speech in patients with basal ganglia lesions. The contribution of basal ganglia function in music perception and performance is a matter of discussion. The French composer Maurice Ravel suffered from a progressive degenerative cerebral disease of uncertain etiology, probably primary progressive aphasia. Based on the case of the famous composer, we present the hypothesis that the fact he adopted different uses of timbre could be attributed to the altered basal ganglia function during the disease evolution. Our assumption would like to add a point of view to the current diagnostic debate.
related resources include:

The banana lady – review by one of our carers/library members

My husband has Semantic dementia, which is disease of the brain in the FTD (Frontotemporal dementia) group and “the banana lady” and other stories of curious behaviour and speech is one of the best collection of case studies I have read on this subject. Semantic dementia is quite rare, and I felt very supported by reading this book as the descriptions presented are so similar to what I am experiencing as a Carer.
There has been quite a lot mentioned about language/comprehension problems, but this book also highlights the behaviour issues which can be very challenging indeed.
It is easy to read and there is an excellent chapter on Tips for Caregivers..

Looks Like Laury Sounds Like Laury, 

The film, Looks Like Laury Sounds Like Laury, captures one year in the long, but short journey of frontotemporal dementia, a little-understood disease that strikes people in the prime of life.

But back to Laury. She lived on the Upper Westside in Manhattan with her husband, Eric, and their two young children. She had been an actress/writer for many years prior to having kids, and then devoted her time to being a mom and writing a memoir about her unconventional childhood. But a memoir requires memories, and when gregarious Laury suddenly became quiet, she began to have difficulty accessing hers.

*The changes were subtle at first. She asked Pam to meet for coffee one day, but it was surprisingly difficult to engage her in conversation. To the question “What’s going on, am I boring you?” she answered prophetically, “No! I’m just in my head. ” Then she offered a reassuring hug – which wasn’t reassuring at all.

*Everyone misread the cues: “We’re not as close as we used to be;” “She must be mad at me;” “Maybe she’s depressed.” As Laury’s friend Nelsie said, “I don’t think it ever occurred to us she couldn’t access language, that she was trapped in her brain and couldn’t access it.”

Exploring experience and perspectives of foreign-born direct care workers in dementia care: Accounts of Korean American personal care aides caring for older Korean Americans with dementia symptoms
Sang E Lee , Banghwa Lee Casado , Michin Hong
pp. 423–438
This focus group study explored experience of Korean American personal care aides caring for older Korean Americans with dementia symptoms. Personal care aides described dementia caregiving as challenging, demanding and stressful, yet they cared for their clients with love and affection, particularly with jeong (i.e., a Korean cultural concept of love, affection, sympathy, and bondage). They learned about dementia mostly through their caregiving experience and expressed their need and strong desire to learn more about dementia. They felt for family struggle and observed family conflict and filial obligation. They advocated the value of personal care aides’ involvement in dementia care. This study revealed a pressing need for dementia training for personal care aides and called for an outreach effort to recruit and train direct care workers with potential of providing culturally competent care for traditionally underserved ethnic minorities.

‘Theatre as an eye-opener’: How theatre may contribute to knowledge about living close to persons with dementia
Eva Gjengedal et al.
 pp. 439–451
The aim of the study was to show how theatre may yield insight into living close to persons with dementia. Six focus group interviews with health providers and close relatives were conducted. The informants, recruited by the local dementia associations and nursing homes in three Norwegian towns, were invited to see the theatre play Our Wonderful World. Further, they were asked to send written reflections from during and after the play to the project group within one week. Transcripts from the interviews and reflection notes were analysed inspired by a phenomenological approach. After discussion and reflection on each member’s preliminary themes, a common meaning of the informants’ experiences were gained. Informants gave written informed consent and The Norwegian Social Sciences Data Services assessed the project. Data showed that the two groups of informants had different knowledge of the patients’ earlier life and thoughts of the future. They became aware of how different they experienced their responsibility, and they expressed different attitudes as to how open one should be about the illness.
Findings are summarised in four themes: Bright memories and sombre views of the future, Life responsibility versus professional responsibility and Shielding versus openness. The drama creates emotional engagement that enabled the informants to transcend their personal experiences and gain new knowledge.

How do lesbian and gay people experience dementia?
James McParland , Paul M Camic
pp. 452–477
The subjective experience of dementia for lesbian and gay individuals is largely absent from the extant literature. This study aimed to explore what it means to experience dementia in this context given the documented psychosocial influences facing this population. A second aim was to develop understanding of these experiences within dyadic relationships.
Three superordinate themes, reflecting characteristics of participants’ experience, were identified: duality in managing dementia, giving yourself away vs. holding onto yourself and relationships as sheltered harbours.
Ten subthemes indicated the processes that were adopted to adjust and make sense of the experience of dementia. These included decisions around concealment, ensuring safety and the promotion of personhood and couplehood. In line with findings for heterosexual couples, partners had an important role in maintaining the identity of the person with dementia.
Results suggest additional and distinct challenges, including experienced and perceived discrimination and heterosexism. In response to these conditions, interviewees worked to resist a ‘double stigma’ of dementia and sexuality. Findings indicated areas of improvement for dementia services, including training in inclusive practice.

related resources include:

Gen silent : a documentary film about LGBT aging [DVD]
Gay, Lesbian, Bisexual and Transgender older people who fought the first battles for equality now face so much fear of discrimination, bullying and abuse in the care setting that many are hiding their lives to survive. Thousands are dying earlier than their straight counterparts because they are isolated and afraid to ask for help. But a growing number of people are fighting to keep their elders from being silenced.
Gen Silent was filmed in the Boston area over a one year period. During that time, director Stu Maddux followed six LGBT seniors through their decision to either stay open about their sexuality or hide it so that they can survive in the long-term health care system.

The lives of LGBT older adults : understanding challenges and resilience
Lesbian, gay, bisexual, and transgendered (LGBT) older adults have unique and varying physical and mental health needs. Yet their experiences have often been ignored in gerontological and LGBT studies. In this important and timely volume, Orel and Fruhauf bring together crucial research from leading experts in the field to shed light on the unique challenges facing this oft-overlooked but growing population. This book uses a life course perspective to investigate how LGBT older adults have been shaped by social stigma and systematic discrimination. Although many of their experiences are similar to those of younger LGBT individuals, LGBT elders grew up in a particularly oppressive time, which continues to impact their well-being. However, these individuals have also developed coping mechanisms to adapt to stigma, discrimination, and the challenges of aging. Thus, the book explores not only the challenges and needs of this population but also their strengths and resilience. The intersection of cultural factors and personal attributes is highlighted.
LGBTI People and Dementia [DVD]
Alzheimer's Australia
For LGBTI people, often referred to as the invisible Australians, ageing and dementia place them in the vulnerable position of needing to depend on health and aged care services when a lifetime of discrimination and prejudice has taught them always to be wary and to conceal their sexual orientation or gender identity or conceal being intersex.
This training DVD invites you, your service or your organisation to begin looking at what kind of welcome you will offer them.

End-of-life decision making for persons with dementia: Proxies' perception of support
Hyunjin Noh, Jung Kwak
pp. 478–493
Healthcare proxies need support in making end-of-life decisions for persons with dementia (PWD). This study explored perceptions of support in decision making among proxies of PWD through semi-structured interviews with 20 proxies. Thematic analysis identified three sources of support: family, doctors, and religiosity/spirituality. Family's engagement in care discussions and support for proxies' decisions were viewed helpful while disagreement or criticism, combined with lack of knowledge about PWD's condition and needs, were not. Doctors were viewed supportive when proxies felt doctors respected their opinions and PWD's wishes. Doctor-PWD rapport influenced proxies' views of medical advice from doctors. Although religiosity/spirituality provided guidance and hope, it also presented conflicts when PWD's wishes differed from proxies' beliefs. Therefore, families of PWD should be provided with assistance in reconciling or mediating family conflicts and further education about the illness trajectory as well as risks/benefits of life-sustaining treatments. Assistance should also be provided to address religious/spiritual conflicts.

Study partners perform essential tasks in dementia research and can experience burdens and benefits in this role
Betty S Black et al.
pp. 494–514
Most studies that enrol individuals with dementia require a study partner for each participant. Study partners—usually family members—perform several key roles: accompanying the participant to visits, providing information about the participant, and assisting with procedures such as taking medication. Little is known, however, about their experiences when performing these roles. Dementia researchers and institutional review boards need to know these experiences because the study partner role is one key factor in a study’s success. This prospective qualitative study, using up to three semi-structured interviews with 62 study partners involved in a range of dementia studies, documented their subjective experiences. Content analysis demonstrates that study partners perform a range of tasks—often within the context of being a caregiver—that enable cognitively impaired individuals to participate in dementia research. These tasks present study partners with unique burdens and benefits, some of which dementia researchers and institutional review boards can address.

New relationships and intimacy in long-term care: The views of relatives of residents with dementia and care home staff
Esther Wiskerke, Jill Manthorpe
pp. 405–422
There is limited research on what family members and frontline care home staff consider to be the best responses to the sexual expression of a person with dementia, whilst at the same time respecting relatives’ feelings, managing their possible distress and conflict.
The views of care home staff and relatives had similarities in general terms regarding the problems arising around expressions of sexuality in care homes: indicting that a light-hearted or non-physical connection between residents is deemed acceptable, but the moment it becomes a sexual relationship then decision making becomes more complicated. Staff were inclined to turn to managers for advice and to consider separating residents. They expressed familiarity with distracting residents from situations that were of concern. Relatives were considerate of the difficulties and dilemmas faced by care home staff.
The use of a vignette facilitated discussion of a potentially sensitive topic. Areas for further research are identified.

related resources include:

The things we keep 

*this book is available in 3 formats - paper back on CD or download on your overdrive app

The Things We Keep - Audiobook

An advantage of using fiction to learn about dementia is that it puts a context around the person living with dementia and their families and the community or residential care facility.  

It can let you see the way different attitudes towards dementia may impact on peoples behaviour and it adds other people lives into the mix so it's may not be as intense as just reading about dementia.

This book explores love and sexuality and families attitudes in trying to keep their family members safe possibly at the expense of their happiness. 

It also shows how different people communicate with people with dementia and the impact it has on them and and their lives, all in a subtle way. Plus it's a great read!

Away From Her DVD

AWAY FROM HER is a beautifully moving love story that deals with memory and the circuitous, unnamable paths of a long marriage. Married for 50 years, Grant (Gordon Pinsent) and Fiona's (Julie Christie) commitment to each other appears unwavering, and their everyday life is full of tenderness and humour. 
This serenity is broken only by the occasional, carefully restrained reference to the past, giving a sense that this marriage may not always have been such a fairy tale. This tendency of Fiona's to make such references, along with her increasingly evident memory loss, creates a tension that is usually brushed off casually by both of them. As the lapses become more obvious and dramatic, it is no longer possible for either of them to ignore the fact that Fiona is suffering from Alzheimer's disease.

Eventually, Fiona decides that it is time for her to enter into a retirement home that specializes in the dementia care. One of the more archaic rules of the place is that a patient may not have any visitors during their first month in the facility in order to 'adjust.' After an excruciatingly painful 30 days separated from his wife, Grant returns to the care home to discover Fiona seems to have no memory of him and has turned all of her affection to Aubrey (Michael Murphy), another resident in the home.

Grant, finding no option but to accept his new status as an attentive acquaintance visits her daily and is forced to bear witness to the cement bond that has developed between her and Aubrey.

Cognitive stimulation therapy as a low-resource intervention for dementia in sub-Saharan Africa (CST-SSA): Adaptation for rural Tanzania and Nigeria
Sarah Mkenda
 pp. 515–530
Cognitive stimulation therapy is a non-pharmacological intervention for people with dementia. Its use has been associated with substantial improvements in cognition and quality of life in studies from high-income countries, equivalent to those achieved by pharmacological treatments. Cognitive stimulation therapy may be particularly suited to low resource settings, such as sub-Saharan Africa, because it requires little specialist equipment and can be delivered by non-specialist health workers. The aim of this study was to adapt cognitive stimulation therapy for use in sub-Saharan Africa taking into account socio-cultural differences and resource implications.
Cognitive stimulation therapy is a structured programme, originally developed in the United Kingdom. Substantial adaptations were required for use in sub-Saharan Africa. The formative method for adapting psychotherapy was used as a framework for the adaption process. The feasibility of using the adapted cognitive stimulation therapy programme to manage dementia was assessed in Tanzania and Nigeria in November 2013. Further adaptations were made following critical appraisal of feasibility.
The adapted cognitive stimulation therapy intervention appeared feasible and acceptable to participants and carers. Key adaptations included identification of suitable treatment settings, task adaptation to accommodate illiteracy and uncorrected sensory impairment, awareness of cultural differences and usage of locally available materials and equipment to ensure sustainability.
Cognitive stimulation therapy was successfully adapted for use in sub-Saharan Africa. Future work will focus on a trial of cognitive stimulation therapy in each setting.

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