May 15, 2018

Dementia and sexuality : the rose that never wilts - sexuality and relationships

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














Dementia and sexuality : the rose that never wilts

This book offers understanding and a positive attitude to care staff and relatives about the sometimes challenging sexual behaviour of people with dementia. It describes the possible causes and shows that, armed with this knowledge, a satisfactory outcome for all can often be achieved.


The author, Elaine White, has been consulted about sexual behaviour for many years, and is therefore able to include for the benefit of readers many true stories from her work - these case studies help the reader to understand the situations that many find themselves in

Dementia and sexuality makes the powerful point that how each of us perceives and responds to challenging sexual behaviour is very important.
It asks readers to think deeply about their own attitudes as well as the behaviour of people with dementia....




Jan's story : love lost to the long goodbye of Alzheimer's

"...Eventually, Petersen made a decision that is often privately made but rarely discussed. He felt his only chance of survival was to find new love..."

Barry Petersen, long-time CBS news correspondent, has an impressive list of endorsements for his book, including testimonies from Katie Couric, Brian Williams, and Rosalynn Carter. 

This is a love story with a controversial and important ending.

Petersen and his wife met and quickly fell passionately in love. Their marriage was enduring and happy as they shared his life as a traveling correspondent. Then came the diagnosis that would explain Jan’s changing behaviour. Beautiful, vivacious, smart Jan was diagnosed with younger-onset Alzheimer’s disease.

Eventually, Petersen made a decision that is often privately made but rarely discussed. He felt his only chance of survival was to find new love. He met a widow who had loved her spouse as much as he loved Jan. They became a couple, with the blessings of most of Jan’s 

family and friends. 


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.

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
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/story!



eBooks on communication also include:

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


Their application of the five love languages creates a new way to touch the lives of those who have Alzheimer’s, as well as their caregivers. 

Barr, Shaw and Chapman explain an underlying principle of hesed love, and emphasize that it is an imperative component of dementia care. 
This collaborative work between a healthcare professional, caregiver, and relationship expert will: provide an overview of the love languages and Alzheimer’s diseasecorrelate the love languages with the developments of the stages of AD; discuss how both the caregiver and care receiver can apply the love languages; address the challenges and stresses of the caregiver journey; and offer personal stories and case studies about maintaining emotional intimacy amidst AD.

The easiest way to read an eBook is to simply choose "READ IN BROWSER"





  • Where the Light Gets In - Audiobook
  • Where the Light Gets in : Losing My Mother Only to Find Her Again

    Many know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the "Father of the Bride" movies, the calculating Peggy Kenter on "Nashville," or the wife of country music artist, Brad Paisley. But behind the scenes, Kim’s mother, Linda, was diagnosed with a rare form of dementia that slowly took away her ability to talk, write and eventually recognize people in her own family. "Where the Light Gets In" tells the full story of Linda s illness called primary progressive aphasia from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humour and grace. Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, "Where the Light Gets In" is a heart warming tribute to the often fragile yet unbreakable relationships we have with our mothers."


The ethics of sex and Alzheimer's


Alzheimer’s punishes not only its victims but also those married to them. This book analyses how Alzheimer’s is quietly transforming the way we think about love today. Without meaning to become rebels, many people who find themselves "married to Alzheimer’s" deflate the predominant notion of a conventional marriage. By falling in love again before their ill spouse dies, those married to Alzheimer’s come into conflict with central values of Western civilization – personal, sexual, familial, religious, and political. Those who wait sadly for a spouse’s death must sometimes wonder if the show of fidelity is necessary and whom it helps.
Most books on Alzheimer’s focus on those who have it, as opposed to those who care for someone with it. This book offers a powerful and searching meditation on the extent to which someone married to Alzheimer’s should be expected to suffer loneliness. The diagnosis of dementia should not amount to a prohibition of sexual activity for both spouses. Portmann encourages readers to risk honesty in assessing the moral dilemma, using high-profile cases such as Nancy Reagan and Justice Sandra Day O'Connor to illustrate the enormity of the problem. Ideal for classes considering the ethics of aging and sexuality.




Dying Light - a film about dementia
 (12 minutes long)

Is the touching story of Eva, a strong willed elderly woman who is struggling to look after herself or make sense of her own life as dementia takes over.

* Eva finds refuge in the passionate memories of her youth, of her life as a lover and a young mother. Those memories become more vivid and real to her than the world that currently exists around her dying light

* from a prizewinning short story, also entitled Dying Light.

Sexualities and dementia : education resource for health professionals and 
Sexualities and dementia : education resource for health professionals : facilitator's guide  [booklet and DVD] 











Managing the delicate issue of sexual expression amongst people with dementia is the focus of a new education resource produced by Griffith University researcher Dr Cindy Jones.
The first resource of its kind and the subject of funding from the Department of Health and Aging and Queensland Dementia Training and Study Centres (DTSC), Sexualities and Dementia: Education Resource for Health Professionals is aimed at assisting health professionals working across care settings.
It is also the first e-learning resource in Australia to include concerns and issues faced by non-heterosexual people with dementia, including those who identify as lesbian, gay, bisexual, transgender and intersex (LGBTI).Based on national and international literature and research by Dr Jones from Griffith’s Centre for Health Practice Innovation, the free eLearning resource aims to increase awareness of intimacy, sexualities and sexual behaviours specific to people with dementia and to guide their carers on how to better support them.



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.

May 14, 2018

Dementia – The international journal of social research and practice, - Volume 17, Issue 3, April 2018


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




Dementia looming!

Quantifying the benefits of peer support for people with dementia: A Social Return on Investment (SROI) study
 Elizabeth Willis,  Amy C Semple
pp. 266–278

Abstract
Concept mapping to improve team work, team learning and care of the person with dementia and behavioural and psychological symptoms

Suzanne M Aberdeen ,  Graeme Byrne
pp. 279–296

Objective
Peer support for people with dementia and carers is routinely advocated in national strategies and policy as a post-diagnostic intervention. However there is limited evidence to demonstrate the value these groups offer. This study looked at three dementia peer support groups in South London to evaluate what outcomes they produce and how much social value they create in relation to the cost of investment.

Results
Findings showed the three groups created social value ranging from £1.17 to £5.18 for every pound (£) of investment, dependent on the design and structure of the group. Key outcomes for people with dementia were mental stimulation and a reduction in loneliness and isolation. Carers reported a reduction in stress and burden of care. Volunteers cited an increased knowledge of dementia.

Conclusions
This study has shown that peer groups for people with dementia produce a social value greater than the cost of investment which provides encouraging evidence for those looking to commission, invest, set up or evaluate peer support groups for people with dementia and carers. Beyond the SROI ratio, this study has shown these groups create beneficial outcomes not only for the group members but also more widely for their carers and the group volunteers.

RemoDem: Delivering support for people with dementia in remote areas
 Alison Bowes,  Alison Dawson

 29 RemoDem aimed to develop, test and evaluate services for people with dementia in remote areas of the Faroe Islands, Greenland, Sweden and Scotland. Formative and summative evaluation used a flexible research design including collection of baseline data, interviews and focus groups with key informants and data relating to service users, i.e. people with dementia and their carers. Challenges for service providers included organisational difficulties, lack of clear information about their populations with dementia and lack of knowledge in local communities. Test sites which developed services building on their particular local starting points adopted both specialist and ‘off the shelf’ technologies and found that these were generally helpful for people with significant support needs. The flexible research design was found to be essential in the real world conditions of the service development and evaluation. Services were more successful where more mature and less experimental technologies were used. The new services promised to address effectively challenges of remoteness including distance, communication and workforce deployment issues.7–314

Caring in the wake of the rising tide: Moral distress in residential nursing care of people living with dementia
 Em M Pijl-Zieber,  Olu Awosoga
  ; pp. 315–336

Abstract

Objective
Moral distress is increasingly being recognized as a concern for health care professionals. The purpose of this study was to explore the nature and prevalence of moral distress among nursing staff who care for people living with dementia.

Results
Moral distress is prevalent in the nursing staff who provide dementia care. Nursing staff reported experiencing moral distress at least daily or weekly. Both frequency and severity of moral distress increased with proximity to (amount of time spent at) the bedside. Moral distress had negative psychological and physiological effects on nursing staff, and affected intention to quit.

In their own words: The experience and needs of children in younger-onset Alzheimer's disease and other dementias families
 Caroline Rosenthal Gelman,  Kate Rhames
 337–358

Abstract

Because of the age of persons diagnosed with younger-onset Alzheimer's disease or other dementias (YOD), an important and as yet relatively little explored area of YOD, particularly in the United States, is the impact on young children of having a parent with YOD. After reviewing the small but growing research in this area, we report on findings from 12 in-depth interviews with children and well-parents in families with a parent with YOD on the experience and needs of children having a parent with this diagnosis. Children report disruption in many aspects of their lives: their developmental trajectory, emotional and psychological development, familial and broader social relationships, and financial stability. Despite these significant disruptions, and a dearth of information, resources, and services tailored to their individual and familial needs, these children demonstrate remarkable resilience and self-awareness. We discuss implications for interventions with these families.

Concepts for communication about risk in dementia care: A review of the literature

 Mabel Stevenson,  Michelle E McDowell
 pp. 359–390

Abstract

Abstract
Communication about risk is central to decisions in dementia care. This review synthesises research on risk concepts and communication in dementia. Twelve bibliographic databases and one online search engine were searched up to February 2016. Reference lists of two related literature reviews were used. Thirty-four articles were identified that focused on risk concepts; two articles related to risk communication. Concepts were often socially constructed, and perceptions may differ from actual adverse outcomes. Perceptions of risk and thresholds of risk-tolerance varied between individuals with dementia, carers and professionals. Individuals with dementia were found to behave differently from controls when making decisions involving risk information in experimental settings. Cognitive impairment was also associated with lower health numeracy. These findings highlight the importance of communication between stakeholders when making decisions and of presenting information in an appropriate way to support informed and positive risk taking. Research is required on risk communication in dementia.


Book Review

Kate Swaffer, What the hell happened to my brain? Living beyond dementia
Jessica Young, ,  Kate Swaffer

Kate Swaffer was just 49 years old when she was diagnosed with a form of younger onset dementia. In this book, she offers an all-too-rare first-hand insight into that experience, sounding a clarion call for change in how we ensure a better quality of life for people with dementia. Kate describes vividly her experiences of living with dementia, exploring the effects of memory difficulties, loss of independence, leaving long-term employment, the impact on her teenage sons, and the enormous impact of the dementia diagnosis on her sense of self. Never shying away from difficult issues, she tackles head-on stigma, inadequacies in care and support, and the media's role in perpetuating myths about dementia, suggesting ways in which we can include and empower people with the diagnosis. She also reflects on the ways in which her writing and dementia advocacy work have taken her on a process of self-discovery and enabled her to develop a new and meaningful personal identity. Kate's powerful words will challenge misconceptions about dementia, and open our eyes to new ways of supporting people with the diagnosis. A must read for people with dementia and their families as well as for professionals and carers.
 pp. 391–394

May 08, 2018

Dementia – The international journal of social research and practice, Volume 17, Issue 2, February 2018

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





Assets-based approaches and dementia-friendly communities

Even within the context of ‘communities working towards becoming dementia friendly,’ the definitions of ‘dementia-friendly’ and ‘community’ have remained somewhat diverse and even somewhat rather elusive, for example, the concept of ‘community’ may represent a place, the social and physical environments, an organisation, a group of individuals, a society, a culture or virtual communities (Lin, 2017). According to Handley, Bunn, and Goodman (2015), in order to make healthcare more ‘dementia-friendly’, a number of service areas need to be improved and kept at the same standard for any patient. These include diagnosis rates, access to care, treatment support and information, coordination of care, admission and readmission to hospital, admissions to care homes and post-diagnosis support.
Some of the questions to do with dementia-friendly communities are bound to become rather awkward. Nonetheless, a serious attempt to embrace assets-based approaches is therefore critical to a renewed articulation of ‘dementia-friendly communities’ towards communities that are inclusive and accessible (for all) and would also help to break down the barriers of the silos that the main stakeholders have found themselves in. A reframing of dementia-friendly communities, using a strong assets-based foundation, would work especially well if all disability organisations formed a coherent network making sure that the sustainable development goals, the WHO Disability Action Plan, the WHO Action Plan for Dementia: A Public Health Response, Community Based Rehabilitation and the UNCRPD and other Conventions

Shibley Rahman ,  Kate Swaffer pp. 131–137


Embodiment in tests of cognitive functioning: A study of an interpreter-mediated dementia evaluation
 Ali Reza Majlesi ,  Charlotta Plejert
pp. 138–163

Abstract

This study explores how manners of mediation, and the use of embodiment in interpreter-mediated conversation have an impact on tests of cognitive functioning in a dementia evaluation. By a detailed analysis of video recordings, we show how participants—an occupational therapist, an interpreter, and a patient—use embodied practices to make the tasks of a test of cognitive functioning intelligible, and how participants collaboratively put the instructions of the tasks into practice. We demonstrate that both instructions and instructed actions—and the whole procedure of accomplishing the tasks—are shaped co-operatively by embodied practices of all three participants involved in the test situation. Consequently, the accomplishment of the tasks should be viewed as the outcome of a collaborative achievement of instructed actions, rather than an individual product. The result of the study calls attention to issues concerning interpretations of, and the reliability of interpreter-

What are the barriers to care integration for those at the advanced stages of dementia living in care homes in the UK? Health care professional perspective
 Nuriye Kupeli ,  Gerard Leavey ,  Jane Harrington et al
pp. 164–179

Abstract

People with advanced dementia are frequently bed-bound, doubly incontinent and able to speak only a few words. Many reside in care homes and may often have complex needs requiring efficient and timely response by knowledgeable and compassionate staff. The aim of this study is to improve our understanding of health care professionals’ attitudes and knowledge of the barriers to integrated care for people with advanced dementia. In-depth, interactive interviews conducted with 14 health care professionals including commissioners, care home managers, nurses and health care assistants in the UK. Barriers to care for people with advanced dementia are influenced by governmental and societal factors which contribute to challenging environments in care homes, poor morale amongst care staff and a fragmentation of health and social care at the end of life. Quality of care for people with dementia as they approach death may be improved by developing collaborative networks to foster improved relationships between health and social care services.

 It was then that I thought ‘whaat? This is not my Dad”: The implications of the ‘still the same person’ narrative for children and young people who have a parent with dementia

 Pat Sikes,  Mel Hall
pp. 180–198

Abstract

This research used auto/biographical interviews to explore the experiences of 19, 8 to 31 year olds who had a parent with dementia. Thematic analysis revealed challenges occasioned by the master narrative that people with dementia are ‘still’ the same person they were prior to the onset of their condition. While this notion is – rightly – at the heart of person-centered care in dementia services, the ‘still’ discourse conflicts with the experiences of young people. Their accounts suggest that the construction of their parent as the same person is not helpful and that, furthermore, expectations that they will behave and feel towards that parent as they did before are a source of distress in what is already a challenging situation. This paper highlights the need to equip young people with support that acknowledges that their parent may well be drastically different to the Mum or Dad they previously ‘knew’.

The role of music in the lives of older adults with dementia ageing in place: A scoping review

Melanie Elliott ,  Paula Gardner
; pp. 199–213

Abstract
The number of people around the world living with dementia is predicted to rise from 44 million to 135 million by 2050. Traditional treatments for dementia have been largely unsuccessful and prompted the emergence of alternative strategies. Music is emerging as an effective therapeutic strategy for older adults with dementia however, most of the work to date has focused on institutions. The purpose of this scoping review was to summarize what is known about the role and impact that music plays in the lives of community-dwelling older adults with dementia. Using a five-stage framework for conducting a scoping review, analysis revealed three ways in which music influences the lives of community-dwelling older adults with dementia: (a) reduced agitation, (b) improved cognition, and (c) enhanced social well-being. The concept of personhood provided a lens with which to conceptualize the findings and highlights the need for continued research.

Influence of hope, social support, and self-esteem in early stage dementia

 Valerie T Cotter ,  Elizabeth W Gonzalez et al
; pp. 214–224

Abstract

Background
People in the early stages of dementia adjust to the illness through stages of awareness, coping, and evaluation. Studies have found that hope, social support, and self-esteem facilitate coping, adjustment, and adaptation in chronic illness.
Objective
The purpose of this descriptive study was to examine the relationships between hope, social support, and self-esteem in individuals with early stage dementia.
Results
Hope was moderately associated with self-esteem (r = .49, p < .001). Hope accounted for 25% of the variance in self-esteem and was a key component in predicting self-esteem. No significant relationship was found between social support and self-esteem.
Conclusion
Findings suggest that hope may be an important factor to help individuals manage potential threats to self-esteem in the experience of early stage dementia. Strategies to inspire hope and then enhance self-esteem are promising for individuals living with early stage dementia.

The use of cognitive behaviour therapy in the management of BPSD in dementia (Innovative practice)

 Deborah Koder
; pp. 227–233

Abstract

Psychosocial approaches to the management of behavioural and psychological symptoms of dementia have received much support in the scientific literature. The following paper focuses on cognitive behaviour therapy as a valid framework in assessing and treating people with behavioural and psychological symptoms of dementia. The importance of identifying symptoms of depression and anxiety is emphasized, as cognitive behaviour therapy has been shown to be an effective intervention for these conditions in older adults. Modifications of cognitive behaviour therapy for those with dementia are discussed based on available evidence, with emphasis on incorporating nursing home staff in treatment programs and focusing on behavioural elements of cognitive behaviour therapy such as activity scheduling. The paper concludes with suggestions regarding how to incorporate and promote the use of cognitive behaviour therapy in dementia care settings.

Pilot test of a six-week group delivery caregiver training program to reduce sleep disturbances among older adults with dementia (Innovative practice)

 Sweta Tewary,  Nicole Cook et al.
; pp. 234–243
Abstract

The purpose of the pilot program was to examine the adaptability and feasibility of a modified group-delivery sleep education program (NITE-AD) designed to reduce nocturnal disturbances in community-dwelling older adults with dementia. We recruited seven caregivers of persons with dementia from two adult day care centers in South Florida into a six-week group program at adult day care centers. A trained sleep educator taught caregivers about the impact of aging and dementia on sleep and how non-pharmacological interventions such as increasing light, regular exercise, and sleep hygiene strategies can improve sleep in persons with dementia. The curriculum incorporated ongoing problem solving and goal setting. Results suggest improvement in caregiver depression and persons with dementia sleep problems. Caregivers reported that the program provided them support and valuable strategies that they will continue to apply. Educating caregivers in a group setting about non-pharmacologic strategies for managing sleep may reduce caregiver burden and improve sleep among persons with dementia.

Towards the end of life: An in-depth exploration of the role of Admiral Nursing in dementia care (Innovative practice)
 Simon C Evans,  Karen Harrison-Dening,  Kate Read
pp. 244–251

Abstract

There are approximately 150 Admiral Nurses in the UK who work alongside other health and social care professionals to support people with dementia and their family carers. However, the stigma of the disease and the lack of recognition that dementia is a life limiting illness have led to neglect in addressing the end of life challenges. The small in-depth study reported here aimed to add to an extremely limited formal evidence base for the effectiveness of this approach and to develop a greater understanding of the range of knowledge and skills required of them in ensuring they are better able to support families in the later stages of the illness. Findings focus on the experiences of family carers, the impact of performing the Admiral Nurse role and the use of qualitative measures in this setting.

The challenge pathway: A mixed methods evaluation of an innovative care model for the palliative and end-of-life care of people with dementia (Innovative practice)
 Emily Harrop,  Annmarie Nelson et al.

; pp. 252–257
Abstract

An innovative service for the palliative and end-of-life care of people with dementia was introduced at a UK hospice. This evaluation involved analysis of audit data, semi-structured interviews with project staff (n=3) and surveys of family carers (n=15) and professionals (n=20). The service has increased access to palliative, end-of-life care and other services. Improvements were reported in the knowledge, confidence and care skills of family carers and professionals. Carers felt better supported and it was perceived that the service enabled more patients to be cared for at home or in their usual place of care.


Book Review
Charlotte Clarke, Matthias Schwannauer, Julie Taylor and Sarah Ryhnas (eds), 
Risk and resilience: Global learning across the age span

First Published February 4, 2018; pp. 258–259
Abstract

The somewhat aspirational title of this book belies the lack of a global, integrated understanding of risk and resilience across the age span. Indeed, the book accentuates this lack of integration with three discrete chapters related to childhood and adolescent events; and five chapters dealing with aspects of vulnerability in later life, with a specific focus on dementia. In the introductory chapter, the editors provide guidance as to the ways in which core concepts of risk and resilience are central to the chapters that follow. Importantly, they identify connections in the ways that the interdisciplinary field of risk and resilience have evolved and been applied across the age span. Central to this theme is balancing the location of risk and responsibility; tensions concerning societal mandates to protect; the right to be protected; the right to self-determination; and closely related is agency and independence.

May 07, 2018

Australian Journal of Dementia Care Vol 7 No 2 April/May 2018

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



Cover Story

How to create a dementia-friendly pharmacy

Amanda Bryce explains how her Perth pharmacy is championing dementia-friendly initiatives and why other community pharmacies – the “hidden heroes of the healthcare system”- should do likewise.
Inspired by a client’s needs, attendance at a three-day course offered by in WA, called Dementia Essentials, and a free online course offered by Dementia Australia, which all their staff were asked to complete, it was impossible not to become a champion of dementia.  The article outlines the steps taken to make their pharmacy dementia-friendly.
Approaches included:
Signage and environment
Actively getting to know clients
Education of staff regarding dementia and dementia-specific medications
Inviting clients to share their Advanced Health Directives
Support for Carers

Going beyond ‘tick the box’ training 

In 2016, Dementia Training Australia (DTA) was charged with delivering a three-year, $28 million national Dementia Training Program to the dementia care workforce. DTA’s Directors explain how the consortium’s training and education activities will reach a minimum of 23000 staff and at least 500 care services over the next two years to improve delivery of care for those living with dementia. The focus is on factors that support health and well-being and opportunities for people with dementia to live a full life.
Education and training will be delivered across four streams
CPD training for GPs, nurses, pharmacists and other specialists via courses and workshops.
Vocation level training  (Dementia Essentials)
Online training
Training tailored to the assessed needs of aged care providers willing to work with DTA, implementing and evaluating outcomes (Tailored Training Packages).

Mind the gap: the key to transforming dementia practice
David Sykes discusses how real transformation in dementia practice requires strong leadership in promoting a learning culture within the workplace.



The Virtual Dementia Experience ™ and the Educational Dementia  Immersive Experience (EDIE)  workshop developed by Dementia Australia- provide learning experiences that are more likely to affect participant’s attitude and behaviours.
Sykes discussed the following steps in transferring   learning specific to dementia care into positive outcomes:
Formal education
Tailored training packages
Inclusion of opportunities to apply the learning within practice
Strong leadership in promoting a learning culture within the workplace
Involvement  of staff, consumers and their families in care, by providers


Simple Ideas making an impact 
 pg15-16
NSW aged care provider Anglican Care has recently introduced two complementary programs – The Lifestyle Resource Van, and the Direct Action Response Team (DART) – both with a focus on people living with a cognitive impairment and their carers. Jane Meldrum and Kylie Jacques explain how the projects work and the positive impact they are having.
The aim of the Lifestyle Resource Van (which contains a diverse range of resources such as iPads, indoor golf sets, large print books, games, DVDs board and floor games, knitting, music and art and craft items) is to maximise use of resources across the Anglican Care organisation. The objective is to assist older people to meet their individual needs such as:
Maintaining cognitive ability
Encouraging memory recall
Improving social interaction with others
Increasing physical activity
Promoting and enhancing sensory experience
Evaluation and benefits of the program are discussed.
The DART program aims to treat each person on an individual basis. DART staff  implement an individual therapy-based strategy including, but are not limited to exercise, music, reminiscence, multi-sensory and pet therapy, and the resources in the Lifestyle Resource Van.
The objective of the program is to improve quality of live for residents and clients, improve communication and expand Anglican Care services.
Meldrum and Jacques discuss these objectives in more detail, how the program works and its positive outcomes.



Looking beyond disease  
Pgs 17 - 19
Dr Allen Power, a physician, is the author of two books, Dementia Beyond Drugs and Dementia Beyond Disease, that have contributed to an understanding of the lived experience of Dementia.  Dr Allen Power challenges the medical model paradigm of dementia care and focuses on a holistic lived experience. He is strong advocate for the Domains of Well-being model, an Eden Alternative  mentor, and advocate for people with dementia. Jason Burton interviewed Allen during his recent visit to Australia to present a series of lectures and workshops for Alzheimer’s WA’s Dementia Friendly Communities Project.

Sharing the PIE pgs 20 -22
Positive Interactive Engagement (PIE) is a structured after-hours activity program developed by AnglicareSA to improve the interaction and engagement for residents  with dementia in the evenings and at weekeneds .

An example of some of the PIE activity programming:

Activity category
Range of activities
Goals
Descriptor
Sensory
3.30 5.00 pm
Cooking basket (includes food brochures and catalogues and coookbooks )
Watching cooking shows
Cupcake making
Sensory towels
To:
Enhance a feeling of well-being
Undertake daily living activities
Stimulate discussion and appetite
A range of sensory activities and visual cues to stimulate the senses before evening meal time
Evening meal – 5 pm



High intensity
5.30 – 7.00 pm
Whiteboard/ board games
Bowling
Bean bag toss/ dice games
Bocce
To promote coordination and physical wellbeing and group participation
Group activities that focus on physical activities and gross motor skills – group connection and interaction
Low intensity
7.00 7.45 pm
Reminiscing box
Fun facts
Beauty/tool bags
suitcase Travel
mystery night
To promote engagement and interaction
Stimulate conversation
Trigger remising
Encouraging discussion and interaction with in a clam environment
Relaxation
7.45 – 8.00pm
Reading
Relaxations
Movies
Wind down to enhance rest
Positive triggers that simulate home evening activities and encourage normal  sleep


The lantern Project : shining a light on food in aged care

Aims to improve mealtimes and dining experiences in response to unacceptably high levels of malnutrition particularly those with dementia .
Points of practice include;
  • Asking people regularly about their food references  - past and present
  • Capitalise on sweet foods
  • We eat with our eyes – visually appealing familiar foods –  not blobs of texturally modified food
  • Sharing meals offers many benefits including positive social interactions and mirroring eating habits
  • Food-first approach are recommended before considering supplements as they may not lead to increase in weight which is a factor in people with dementia
  • Dental care is important
  • Themed menus and can trigger memories – particularly in relation to residents’ cultural background
  • Resident involvement in mealtime activities
  • Tapas menus promote independence  and dignity
  • Focus on dining room ambiance – lighting, music, seating arrangements,
  • Engaging the senses

….p  23 – 27

A Village for all

In 2013 NSW aged care provider Scalabrini was presented with an opportunity to build a new residential aged care facility and were determined to do something extraordinary…prioritising residents’ needs in all aspects of the building and care model all based on evidence – the village in Drummoyne includes key features such as
Social model of care – combining person-centred care with a holistic view of wellbeing.
A core principle at the Village is to preserve normalcy in environmental lifestyle – to reduce stress and anxiety, and to reflect the Italian heritage and to protect dignity and promote choice and independence …
The wellbeing manager has helped to rewrite job descriptions for carers reflecting the determination to put residents before clocks and tasks! Staff are encouraged to use their skills, such as painting and meditation and share them with residents and staff turnover is reduced which is in the best interests of residents…p28-30

End of life care: resources to strengthen support

Report on the study and explain how co-designing new resources could help strengthen support at end of life
Key points : end of life planning discussions are hard to have and practical resources are needed
Existing resources don’t draw on all aspects
A care Plan guide (CPG) prototype was developed …includes timely planning, co-ordinated care, effectively working with primary carer, managing hospitalisation, continuing care after death, valuing staff and ongoing learning….p 31 -34

Agitation related to indoor air temperature

Findings – agitation was found to be related to the number of hours that residents were exposed to temperatures higher than 26 degrees C and lower than 20 degrees C…p 35