November 08, 2018

Australian Journal of Dementia Care Vol 7 No 5 October/November 2018

*Full text articles, DVDs,  books, Books on CD and eResoures are available to members of Dementia Australia 

*You can request items by emailing


Consistent staffing models: sharing the learning

The case for consistent staff assignment. Daniella Greenwood argues that it is the most powerful operational approach to support the rights of people with dementia and to promote staff retention. The traditional model of staffing in residential aged care is ‘rotating assignment’. 

With this approach, personal support staff regularly work with a range of different residents (or clients in a home care context). Rotating assignments make it difficult for personal support staff to develop relationships and familiarity with the people they support, so it is not difficult to see why they are a key operational barrier to recognising and honouring the existing and emerging preferences, passions and strengths of people living with dementia.

The rotating assignment approach is another way of ensuring that staff do not get ‘too close’ to the residents they support. Research indicates that relationships are the primary source of job satisfaction for staff, and a key source of satisfaction and well-being for residents/clients in a consumer-directed industry. Despite this, the deeply embedded concept of ‘professional distance’ has a strong hold in both residential and home care settings.

Key benefits of consistent staff assignment include:
  • Personal support staff are able to get to know and support what is unique about, and uniquely important to, the people they support.
  • Personal support staff can get to know the little things about a person, the things that matter, and also be more aware of subtle changes in mood and health.
  • People living with dementia see familiar faces and feel the familiar touch of their bodies.
  • People living with dementia are able to experience a sense of purpose in the reciprocal nature of the developing relationship.
  • Personal support staff can bring their humanness, tacit knowing, intuitions, strengths, and life skills to their relationships at work.
  • Personal support staff are offered the opportunity to connect deeply and truly get something back from their relationships with the people they support.
  • Families are able to develop close and trusting relationships with consistent staff members.
  • Families no longer experience the exhaustion of dealing with lots of different strangers. It is worth their while now to share more, connect more deeply, and have deeper levels of trust in the organisation and in the personal support staff directly providing the day-to-day support...
Pg 25-29

The freedom of home

Natasha Chadwick and Alasdair A MacDonald report on a new, award-winning inclusive model of residential aged care where residents with a range of care needs, including advanced dementia, and with similar values and lifestyle preferences, share a home.
Key findings include;
  • Residents do not need to be segregated by diagnosis, but grouped according to their lifestyle and values.
  • Residents were supported and encouraged to do day-to-day household tasks.
  • The optimum resident-to-staff ratio which changes as the care needs of each house change.
  • The development of a companion role.
  • House companions being able to assist with medication and the removal of medical trolleys.
  • Customised food safety program.
  • Removal of certain routines.
  • Reduced incidents of sundowning and improved sleep.
  • Increased appetite and participation in cooking and menu planning.
  • Full compliance with accreditation standards.
  • Costs per resident where shown to be in line with traditional models of care.  Pg 17

Scaffolding to facilitate artistic success

Alexandra Ramsey and colleagues show how people with dementia can be supported to use their ‘retained skills’ in painting and drawing
Producing works of art can be fulfilling in it’s own right for people with dementia  regardless of therapeutic outcomes …people can be supported in their sustained skills in painting and drawing..

Observational measures show improvements in task interest, sustained attention, self-esteem, sadness, pleasure, and verbal expression, of feeling normal  and that the benefits can be cumulative if participation is maintained over time.
Typical art production includes attentional control—composition perception—motor control – explicit memory
Art production with dementia – attentional control – composition perception --   explicit memory  but also step by step guidance minimisation of distractions by carer and help drawing attention to the activity  and lower complexity and e easily recognised subject matter. Pg 21

What makes a real home for people with dementia?

An Australian study has found that a small-scale, home-like model of residential care delivers better outcomes for residents with cognitive impairment and dementia, without any increase in facility running costs. Suzanne Dyer and colleagues report
Measuring good quality residential aged care using the INSPIRED study consumer choice index – 6 dimension instrument  (CCI-6D) was developed. The tool in conjunction with the standard aims to;
Enable residents, their families etc to provide input into the assessment of quality care
Enable assessment of quality care in a manner that reflects the quality of life of residents
- the article includes outcomes, conclusions and challenges gaining ethics approval…Pg 32

CARE improves nurses’ dementia knowledge

The CARE Program addresses a gap in dementia and delirium education for nurses. Amanda Tuck and colleagues from Flinders Medical Centre, SA describe the program and outcomes from their pilot study
Due to the large numbers of people living with dementia presenting at hospitals and also those with that will develop delirium during their stay in hospital and the lack of hospital staff training in these areas the CARE program was designed. It uses the pieces of me tool and the 4AT assessment for delirium and cognitive impairment
And the TOP 5 tool (used to record up to 5 personal tips form carers to improve communication and promote personalised care … course measures show the course was very valuable… Pg 10-12

EDIE Acute an exercise in empathy

Dementia Australia’s Enabling EDIE Acute workshop is now available nationally. David Sykes reports
Dementia Australia’s one-hour workshop ‘Enabling Edie Acute’ for health care professionals is now nationally available. It uses Dementia Australia’s award-winning*Education Immersive Experience (Enabling EDIE) to give participants knowledge of a supportive approach to dementia care and empathy for the impact of stress and excess disability the person may experience in an acute care setting.
Useful ways for hospital staff to support communication include;
Identifying themselves as many times as needed
Minimising distractions
Gaining the persons attention
Being inclusive in the conversation – friendly but respectful
Speaking slowly and clearly and keeping sentences short and simple
Providing choice but not overwhelming the person with too many options
Allowing at least 30 seconds for the person to respond…. Pg 13

New dementia training for general practice

With the right skills, GPs and Primary Health Care Nurses can play a vital role in recognising, diagnosis and managing dementia in their patients…
There are many complexities and difficulties – dementia is unlike most other diseases and doesn’t have a straightforward test…rather a comprehensive history provided by a close family member of  may account for up to 80% of a diagnosis ... dementia is complex and nuanced and is different in each patient. Thus there is a need for up-to-date advice Dementia Training Australia  (DTA) tohelp with identifying different types of dementia, recognising the barriers  to diagnosis such as time pressures and fear of making the wrong diagnosis, identifying the medical and social impact of dementia on both the person and there family, differentiating early warning signs, ….Pg 14-15

Dementia Care Illawarra: our journey

Young NSW high school students Mackinly Zecevic, Daniel Michelmore, Lucy Koder and Annabel Hickling-Smith have created an intergenerational dementia care project that has received international recognition.
As part of a project to involve themselves in the local community the students, realising that they had grandparents affected by dementia started their Future Problem Solving Program, the project included prompt sheets to help with asking questions, that led to memory books…Pg 8-9

‘The music that I love and remember’

Rachael Ho, Jiang Weiting, and Melison See investigate the impact of personalised music and intergenerational bonding on people living with dementia
Examines Music with Reminiscence (MwR) – is a collaborative and intergenerational initiative – the main objectives are threefold: to improve quality of life through enhancement of positive emotions- moderate stage dementia; to enhance students’ understanding  of people with dementia ; and to enhance person-centred care. The program duration – 8 to 12 sessions.
Learnings – ensure residents’  wellbeing throughout the sessions by having staff close by; journey with the volunteers- have session briefings etc; pair volunteers with the same resident to deepen relationships; sharing personalised playlists with nurses to promote continuation of wellbeing; including value added learnings , such as personal enhancers from the dementia care mapping …Pg 29 - 31

The latest dementia research news, resources and events!

Optimal temperature in residential care 

Concluded 20 C and 26.2 C appear to be appropriate and desirable for residents in residential aged care however actual temperature range from 17.2 C to 31.6 C. Thermal comfort included layering of clothing and opening and closing …

Risk and the impact of dementia-related behaviours
Looking at behaviours including aggression, agitation, anxiety, wandering, calling out, and sexual disinhibition – using multiple strategies such as person centred care and individual interventions…

Communicating a dementia diagnosis

Practitioner’s decision to diagnose and communicate the diagnosis was influenced by;
Their own beliefs regarding dementia and treatment
Their confidence in the diagnosis and their ability to communicate
Patient’s circumstances including patients level of awareness, severity of symptoms and family support
Access and availability to services and specialists
Cultural norms…

What is a ‘timely’ diagnosis?

Of 446 people surveyed immediate disclosure was preferred by 92%, similarly 88% preferred immediate disclosure of their spouses or partners diagnosis…
Family dynamics and distress
Examines family dynamics contribute to adult primary caregivers’ distress in the context of caring for a parent with dementia – four themes included;
The role of primary caregiver was often given to the person perceived to have the greatest amount of time, closest proximity and highest capacity for care-giving duties. The care-giving role often caused feelings of obligations, distress and resentment…some care-givers felt the major challenge of their role was related to other family members’ inability to accept the diagnosis and also that other family members had different approaches on how to give care- resulting in family conflict…



My book about brains, change and dementia : what dementia is and what does it do?

'Sometimes, a person's brain gets sick with a disease called dementia.'What does dementia do to the brain? And how can we help if someone we know, like a parent or a grandparent, has the disease?

This book breaks down misconceptions about dementia and speaks directly to children aged under 5 about the realities of the disease, using age appropriate language in an engaging and informative way. It reassures parents of the value of open and honest conversation about the challenges raised by dementia and offers advice and support in the opening 'Guide for grown ups'. It includes a diverse audience of characters, to emphasise that ANY child can be impacted by dementia in their loved ones. Unlike traditional storybooks, the ending provides a question for the adult and child reading it to ponder together.

Will I still be me? : finding a continuing sense of self in the lived experience of dementia
What does a dementia diagnosis mean for an individual's sense of self? Christine Bryden shares her insider view on living with dementia and explains how a continuing sense of self is possible after diagnosis and as the condition develops.Encouraging a deeper understanding of how individuals live meaningfully with dementia, the book challenges the dominant story of people with dementia 'fading away' to eventually become an 'empty shell'. It explores what it means to be an embodied self with feelings and emotions, how individuals can relate to others despite cognitive changes and challenges to communications, and what this means for the inclusion of people with dementia in society.

What is the aim of this resource?
This resource provides information to help people living with dementia who are LGBTI, their care partners, family and friends to remain as independent as possible, to be empowered to exercise choice and control and to be supported in an inclusive way.
Topics discussed in this resource include:
• Information about dementia
• Access to support and services
• Planning ahead
• Privacy, confidentiality and disclosure
Why might people who are LGBTI find this resource useful? People who are LGBTI share the same diversity and life experience as the broader community, however they may also have experienced social exclusion, isolation and discrimination. In some circumstances, they may continue to encounter similar issues as they seek support through the aged care or disability care system1 . The suggestions included in this resource are based on research conducted by Dementia Australia and feedback from people who are LGBTI.

Winston's World
A cat's eye view of dementia.  Cartoonist Tony Husband, famous for his account of his father's dementia in Take Care Son, introduces us to Winston and his friends in this closely-observed story of home care for people with dementia.  The book is intended to be used as a training resource for reflection and discussion by home care workers. It has 90 pages in five chapters; each tells an everyday story of life with dementia.

September 21, 2018

Dementia Awareness Month 2018; here are some books that highlight how small actions such as joining a support group or book club or taking a break can make a big difference

Dementia Awareness Month is Dementia Australia’s national awareness-raising campaign held every year throughout September.
Its aim is to encourage all Australians to become more aware of dementia, to get a better understanding of what it is like to live with dementia and how we can support people living with dementia.
This year’s theme is Small actions Big difference.

badgeDementia Friends

People living with dementia can find it challenging to participate actively in the community due, in part, to a lack knowledge or understanding of the condition and how it can impact people.
In fact, a recent survey by Dementia Australia found people living with dementia and carers reported experiencing embarrassing situations, feel strongly disconnected, feel less competent and sometimes feel useless[1].
By becoming a Dementia Friend, and increasing your awareness of dementia and its impacts, you can help a family member, friend, neighbour or co-worker living with dementia feel accepted, safe, included and involved.
A little understanding and kindness can go a long way.
[1]Dementia Australia (August 2017) Dementia and the impact of stigma
To become a Dementia Friend or simply learn more about dementia visit our
*These books, eBooks are available to members of dementia Australia library - if you would like to reserve them please email the Library on

A month of Sundays

This novel shows the power of support groups - even ad hoc ones.

For over ten years, Ros, Adele, Judy and Simone have been in an online book club, but they have never met face to face. Until now... Determined to enjoy her imminent retirement, Adele invites her fellow bibliophiles to help her house-sit in the Blue Mountains. 

It's a tantalising opportunity to spend a month walking in the fresh air, napping by the fire and, of course, reading and talking about books. But these aren't just any books: each member has been asked to choose a book which will teach the others more about her. 

And with each woman facing a crossroads in her life, it turns out there's a lot for them to learn, not just about their fellow book-clubbers, but also about themselves. ones For over ten years, Ros, Adele, Judy and Simone have been in an online book club, but they have never met face to face. Until now... Determined to enjoy her imminent retirement, Adele invites her fellow bibliophiles to help her house-sit in the Blue Mountains. 

But these aren't just any books: each member has been asked to choose a book which will teach the others more about her. And with each woman facing a crossroads in her life, it turns out there's a lot for them to learn, not just about their fellow book-clubbers, but also about themselves.

Rain birds 
Alan and Pina have lived contentedly in isolated – and insular – Boney Point for thirty years. Now they are dealing with Alan’s devastating early-onset Alzheimer’s diagnosis. As he is cast adrift in the depths of his own mind, Pina is left to face the consequences alone, until the arrival of a flock of black cockatoos seems to tie him, somehow, to the present...

*also available in our eLibrary 
review by a carer
"I have just finished reading 'Rain Birds' by Harriet McKnight. I really enjoyed it, and could relate well to the carer - Pina - in the novel. I appreciate your observation along the lines that sometimes we can get more from fiction than reading a biographical /autobiographical account."

Somebody I Used to Know

*also available in our eLibrary 

What do you lose when you lose your memories? What do you value when this loss reframes how you've lived, and how you will live in the future? How do you conceive of love when you can no longer recognise those who are supposed to mean the most to you?

When she was diagnosed with dementia at the age of fifty-eight, Wendy Mitchell was confronted with the most profound questions about life and identity. All at once, she had to say goodbye to the woman she used to be. Her demanding career in the NHS, her ability to drive, cook and run - the various shades of her independence - were suddenly gone.

Philosophical, profoundly moving, insightful and ultimately full of hope, Somebody I Used to Know gets to the very heart of what it means to be human. A phenomenal memoir - it is both a heart-rending tribute to the woman Wendy once was, and a brave affirmation of the woman dementia has seen her become.

 *Five good minutes - books are available in our eLibrary

Five good minutes in your body : 100 mindful practices to help you accept yourself & feel at home in your body

 Collection of easy mindfulness practices to help you recharge your body, accept yourself, and release tension and stress.

Five good minutes in the evening : 100 mindful practices to help you unwind from the day & make the most of your night

Is your filled with chaos and stress, often leaving you with an inability to focus? In less time than you would spend on a coffee break, you can fill your day with calm, balance, and serenity.

Five good minutes with the one you love : 100 mindful practices to deepen & renew your love every day

This work offers 100 simple and fun practices that can help couples find quality time  for each other no matter how crazy their schedules. These simple activities show them  how to become more mindful and focused on one another, leading to a more intimate, connected, and loving relationship.

Dementia, sex and wellbeing

*also available in our eLibrary 

Despite being integral parts of all our identities, sexuality, sex and intimacy are what many would call the Last Taboo in dementia care, usually seen as 'problem behaviours' to be stopped and dealt with. Informed by a combination of accessible neuroscience and person-centred compassion,this book shows that the human need for intimacy, attachment and sexual expression is as important for supporting the wellbeing and personhood of people with dementia as communication and care. 

Considering the brain as the body's biggest sex organ, it examines the cognitive changes that occur in dementia and what these changes mean in the context of sexual behaviour and consent. Taking Carl Rogers' Core Conditions and Tom Kitwood's psychological needs of persons living with dementia as a starting point, Lipinska offers a unique model for person-centred conversations about sex and sexuality that we have not seen before.

September 07, 2018

Resources to use for reminiscence therapy

DVDs,  books, Books on CD and eResoures are available to members of Dementia Australia.

*You can request items by emailing

New DVD 

The vegetable patch DVD

Main Movie The Vegetable Patch 
shows: Man building a vegetable garden ; children helping to plant seedlings ; birds in the garden ; vegetables growing ; cooking and more.

"Share-Time Pictures produce non-verbal communication tools for the care industry. 

Engaging images are presented in the form of themed audiovisuals, DVD videos, 
They are designed for generic reflection, engagement, social identification, reminiscence and quiet enjoyment

Designed for the Lovers of Crosswords
the themes includes:  

Building a Garden Wall (12 words)

The Things Gardeners Do (14 words)

Old Fashioned Garden Flowers (8 words)


Cooking Pumpkin Soup (14 words)

Making Orange Juice (12 words)

Enjoying a Cup of Tea (17 words)


 Hobbies (16 words)

Sewing Notions (17 words)

A Cricket Match (16 words)

Oranges and lemons [DVD]  
Contents: Oranges and Lemons growing ; Cooking, Chopping Fruit ; Making Marmalade ; Other Citrus Fruit ; Botanical Gardens' Trees ; Orange & Yellow colour themes ; Flowers close-up ; Children drinking Orange Juice ; Baking & Decorating a Pavlova ; An Orange & Lemon Medley ; Making Marmalade

Aniseed balls, billy carts and clothes lines : an abc of growing up in the thirties [book and CD set]

With chapters covering diverse and intriguing subjects such as The Flicks, Cracker Night,  The Rat Gang, Jargon, and Dunnies and Dunny men, there are lots of laughs and many memories awaiting rediscovery.
The entertaining topics are also of historical interest, documenting aspects of every day life in the 1930s that today have been all but forgotten and are quite foreign to children of the 21st century.

I remember that : memories of everyday Australia in the 20th century : volume one [includes DVD, guide, cards, facilitator prompts] 

"I Remember That!" is a nostalgic video program that brings back memories of the "good old days!" It features hundreds of images of things that used to be a part of daily life … many of which disappeared decades ago. Although primarily designed as a resource for aged care - especially in therapy for memory loss - you don’t have to be old - or suffer from dementia - to enjoy all the fun!  "I Remember That!"

The Reminiscence Trainer's Pack: For Use in Health, Housing, Social Care and Arts Organisations, Colleges, Libraries and Museums, Volunteers' and Carers' Agencies

Reminiscence can enrich relationships and enhance caring. The pack aims to equip trainers in a variety of settings, sectors and service agencies primarily concerned with older people. The training is designed to introduce reminiscence workers to the theory and practice.

Contents: Introduction -- Aims and objectives -- Using the teaching pack -- Programmes -- 1. What is reminiscence? -- 2. Why reminisce? -- 3. Reminiscence work in small groups (1) -- 4. Reminiscence work in small groups (2) -- 5. Reminiscence work with individuals -- 6. Reminiscence work with people with dementia (1) -- 7. Reminiscence work with people with dementia (2) -- 8. Reminiscing with people with hearing, sight and speech disabilities -- 9. Reminiscing with people with learning disabilities -- 10. Reminiscing with people with depression and with people who have a terminal illness -- 11. Reminiscing with people from ethnic minorities -- 12. Consolidating skills and sustaining good practice -- Evaluation forms -- References -- Certificate of attendance

Writing life histories : a guide for use in caring environments

Writing Life Histories is a practical handbook which gives clear guidance on how to put together life histories in supportive or residential settings. It provides: Step-by-step guidance. Ideas for different types of life histories. Activities, strategies and material for prompting memories. Helpful tools and writing tips. Suggestions for support and forming partnerships with other local services. Ideas for involving the person s family and friends. Discussion on ethical issues to be considered. The benefits of engaging a group or an individual in life history activities include an aid to memory; creative stimulation; a personalised identity when in a residential home; promotion of interaction and co-operation with others; continuity with previous life experience thus combating loss of identity as well as an excellent opportunity to pass on knowledge and experience to others. For staff knowing about past experiences will promote an understanding of behaviour, needs and outlook on life resulting in more personalised care. Staff have references for conversation with cognitive impaired individuals and knowledge about life accomplishments which promotes respect for individuals.

September 05, 2018

Dementia – The international journal of social research and practice,

*Full text articles, DVDs,  books, Books on CD and eResoures are available to members of Dementia Australia 

*You can request items by emailing

Volume 17 Issue 6, August 2018

Special Issue: The Arts and Dementia

The arts and dementia: Emerging directions for theory, research and practice
Paul M. Camic ;  Hannah Zeilig et al.
This special issue includes papers that are empirical, theoretical and review-based, exploring the visual arts, music, theatre and the spoken word. A variety of cultural contexts and settings are covered (including a UK hospital, a US long-term care facility, closed wards in a Dutch nursing home and a German Museum). A systematic review by Curtis et al. sets the tone for this collection by providing high-level evidence about the effectiveness of a range of arts for health activities on the health, well-being and quality of life for older people in care homes.
The importance of confronting the theoretical basis of visual art programmes is tackled by Windle et al., and the study by Schall et al. contributes to the growing evidence base concerning the value of museum-based projects for people with a dementia. There is also a more personal, reflective account by Harrison exploring the transformative effects on an artists’ practice of working with people with a dementia. In a similarly reflective vein, Basting outlines the development of ‘The Penelope Project’ and explores how a creative, community building approach can engage people living with dementias as equals in culture-making projects. Using one of Bastings’ innovations, Swinnen and de Medeiros, in their study, demonstrate the ways in which spoken word projects can support the linguistic agency of people with a dementia in long-term care settings.
pp. 641–644

Systematic review of the impact of arts for health activities on health, wellbeing and quality of life of older people living in care homes

 Amy Curtis;  Lucy Gibson et al
Care home populations frequently feature older people who often experience poor physical health and cognitive difficulties, along with vulnerability to psychological and social stressors. To date there has been no systematic review which focuses on the impact of arts for health activities to the care home population. Evidence was sourced from several databases and 71 studies were deemed eligible for inclusion in this review. These studies underwent data extraction and quality appraisal and the findings associated with health, wellbeing and quality of life are presented within this paper.
pp. 645–669

resources related to music and singing;

Alive inside: A story of music & memory [DVD]

Alive Inside is a joyous cinematic exploration of music's capacity to reawaken our souls and uncover the deepest parts of our humanity. Filmmaker Michael Rossato-Bennett chronicles the astonishing experiences of individuals around the country who have been revitalized and awakened by the simple act of listening to the music of their youth.

The accumulative effects of music therapy on dementia‐related speech deficits in a sub‐acute hospital setting : PhD thesis

Loretta Quinn
Single blinded randomised control trial was conducted to determine the accumulative effects of Music Therapy on dementia-related speech deficits. The hypotheses to be tested whether a programme of MT will result in greater improvement in dementia-related spontaneous speech deficits (in particular naming), than a programme of DT and 2) whether a programme of either MT or DT will result in a reduction in dementia-related spontaneous speech deficits (in particular naming) compared to a non intervention (control) group. 
Music for the ageing brain: Cognitive, emotional, social, and neural benefits of musical leisure activities in stroke and dementia

Teppo Särkämö;
 Music engages an extensive network of auditory, cognitive, motor, and emotional processing regions in the brain. Coupled with the fact that the emotional and cognitive impact of music is often well preserved in ageing and dementia, music is a powerful tool in the care and rehabilitation of many ageing-related neurological diseases. In addition to formal music therapy, there has been a growing interest in self- or caregiver-implemented musical leisure activities or hobbies as a widely applicable means to support psychological wellbeing in ageing and in neurological rehabilitation. This article reviews the currently existing evidence on the cognitive, emotional, and neural benefits of musical leisure activities in normal ageing as well as in the rehabilitation and care of two of the most common and ageing-related neurological diseases: stroke and dementia.
pp. 670–685

The role of participatory music making in supporting people with dementia in hospital environments

Norma Daykin;  Barbara Parry et al
Improving the quality of care for people with dementia in general hospitals is a key priority. Creative activities including music have been examined for their potential role in enhancing quality of life for people with dementia, although relatively few studies have evaluated their use in acute hospital s
Data from this limited pilot study suggest that music is a useful intervention for enhancing patient and staff experiences and improving care in acute dementia care environments. The suggestion that use of anti-psychotic drugs may be reduced when music is present warrants further research.ettings.
pp. 686–701

resources related to the visual arts;

The expressive arts activity book : a resource for professionals

This resource comprises a collection of accessible, flexible, tried-and-tested activities for use with people in a range of care settings, to help them explore their knowledge of themselves and to make sense of their experiences.
Among the issues addressed by the activities are exploring physical changes, emotional trauma, interpersonal problems and spiritual dilemmas. Featuring individual and group activities of varying difficulty, including card making, painting to music, meditation, and body mapping, it also includes real-life anecdotes that bring the techniques to life.

The hen that laid the golden omelette : a guide to art classes for people with dementia: the experiences and learning of two volunteers over ten years

Even when the memory and senses fail, people with dementia may experience the joy of creativity through watercolour painting. This is the liberating message of Barbara Davison and Barbara Potter's inspiring Sefton Art Project.  

The creative arts in dementia care : practical person-centred approaches and ideas

After explaining why adopting a creative approach is central to effective dementia care, the authors go on to discuss meditation, singing, movement and storytelling, describing the therapeutic benefits of each and giving practical examples of how they can be used with individuals or groups. 

Exploring the theoretical foundations of visual art programmes for people living with dementia

 Gill Windle;  Samantha Gregory et al
Despite the growing international innovations for visual arts interventions in dementia care, limited attention has been paid to their theoretical basis. In response, this paper explores how and why visual art interventions in dementia care influence changes in outcomes.
This aims to uncover what works, for whom, how, why and in what circumstances.
This suggests effective programmes are realised through essential attributes of two key conditions (provocative and stimulating aesthetic experience; dynamic and responsive artistic practice).
These conditions are important for cognitive, social and individual responses, leading to benefits for people with early to more advanced dementia. This work represents a starting point at identifying theories of change for arts interventions, and for further research to critically examine, refine and strengthen the evidence base for the arts in dementia care. Understanding the theoretical basis of interventions is important for service development, evaluation and implementation.
; pp. 702–727

Art museum-based intervention to promote emotional well-being and improve quality of life in people with dementia: The ARTEMIS project

 Arthur Schall;  Valentina A Tesky et al
ARTEMIS (ART Encounters: Museum Intervention Study) is an art-based intervention designed especially for people with dementia and their care partners that involves a combination of museum visits and artistic activity.
The results show that art museum-based art interventions are able to improve the subjective well-being, mood, and quality of life in people with dementia. This promising psychosocial approach deserves further attention in future studies and consideration in community-based dementia care programs.
; pp. 728–743

books by Anne Basting; 

The Penelope Project An Arts-Based Odyssey to Change Elder
We must transform long-term care into an experience we and our loved ones can face without dread. It can be done. The Penelope Project shows how by taking readers on an ambitious journey to create a long-term care community that engages its residents in challenging, meaningful art-making.
At Milwaukee’s Luther Manor, a team of artists from the University of Wisconsin’s theatre department and Sojourn Theatre Company, university students, staff, residents, and volunteers traded their bingo cards for copies of The Odyssey. They embarked on a two-year project to examine this ancient story from the perspective of the hero who never left home: Penelope, wife of Odysseus. Together, the team staged a play that engaged everyone and transcended the limits not just of old age and disability but also youth, institutional regulations, and disciplinary boundaries.
Inviting readers to see through the eyes of residents, students, artists, staff, family members, and experts in the fields of education, long-term care, and civically engaged arts practice, this book underscores the essential role of the arts and humanities in living richly. Waiting, as Penelope waited, need not be a time of loss and neglect. The Penelope Project boldly dreams of how to make late life a time of growth and learning. If you dream of improving people’s lives through creative endeavors, this book provides practical advice.

Forget memory : creating better lives for people with dementia

Memory loss can be one of the most terrifying aspects of a diagnosis of dementia. Yet the fear and dread of losing our memory make the experience of the disease worse than it needs to be, according to cultural critic and playwright Anne Davis Basting. She says, Forget memory. Basting emphasizes the importance of activities that focus on the present to improve the lives of persons with Alzheimer's disease and other dementias.
Based on ten years of practice and research in the field, Basting's study includes specific examples of innovative programs that stimulate growth, humour, and emotional connection; translates into accessible language a wide range of provocative academic works on memory; and addresses how advances in medical research and clinical practice are already pushing radical changes in care for persons with dementia.
Bold, optimistic, and innovative, Basting's cultural critique of dementia care offers a vision for how we can change the way we think about and care for people with memory loss... 

*Check out our eLibrary

Building creative communities of care: Arts, dementia, and hope in the United States

 Anne Basting
This essay explores the history of the cultural community development model in the United States and its potential benefits for transforming the lived experience of dementia. Using her work with the 2011 Penelope Project as a case study, the author identifies core elements of a “Creative Community of Care:” open systems; all activities are accessible; the arts are immersed into the environment of care; projects build on existing assets and rituals; projects evolve over long periods of time; and projects have high cultural value/
; pp. 744–754

The lines are open: An artist’s experience of working with dementia research

 Charles R Harrison
This paper offers a first-hand account from a visual artist working with people living with a rare dementia. It explores the processes and motivations involved in situating an individual artistic practice in the field of dementia research. The paper discusses the potential role of creative art-making for neuropsychological testing and some of the complexities of interpretation that this involves. This account also highlights the ways in which working with people with dementia can be personally and artistically transformative.
; pp. 755–762

Participatory arts programs in residential dementia care: Playing with language differences

 Aagje Swinnen;  Kate de Medeiros
This article examines connections between language, identity, and cultural difference in the context of participatory arts in residential dementia care. Specifically, it looks at how language differences become instruments for the language play that characterizes the participatory arts programs, TimeSlips and the Alzheimer’s Poetry Project. These are two approaches that are predominantly spoken-word driven. Although people living with dementia experience cognitive decline that affects language, they are linguistic agents capable of participating in ongoing negotiation processes of connection, belonging, and in- and exclusion through language use. The analysis of two ethnographic vignettes, based on extensive fieldwork in the closed wards of two Dutch nursing homes, illustrates how TimeSlips and the Alzheimer’s Poetry Project support them in this agency. The theoretical framework of the analysis consists of literature on the linguistic agency of people living with dementia, the notions of the homo ludens (or man the player) and ludic language, as well as linguistic strategies of belonging in relation to place.
pp. 763–774

Critical reflections on methodological challenge in arts and dementia evaluation and research

 Karen Gray;  Simon Chester Evans
Methodological rigour, or its absence, is often a focus of concern for the emerging field of evaluation and research around arts and dementia. However, this paper suggests that critical attention should also be paid to the way in which individual perceptions, hidden assumptions and underlying social and political structures influence methodological work in the field. Such attention will be particularly important for addressing methodological challenges relating to contextual variability, ethics, value judgement and signification identified through a literature review on this topic. Understanding how, where and when evaluators and researchers experience such challenges may help to identify fruitful approaches for future evaluation.
; pp. 775–784

Global perspectives on dementia and art: An international discussion about changing public health policy

 Peter J Whitehouse;  Trish Vella Burrows et al
In an era of global environmental deterioration and income inequity, public health faces many challenges, including the growing number of individuals, especially older people, with chronic diseases. Dementia is increasingly being seen not just as a biomedical problem to solve but as a public and community challenge to address more broadly. Concepts like prevention, brain health, and quality of life/well-being are receiving more attention. The engagement of community in addressing these challenges is being seen as critical to successful social adaptation. Arts programs are reinvigorating cultural responses to the growing number of older people with cognitive challenges. The humanities offer ways of understanding the power of words and stories in public discourse and a critical lens though which to view political and economic influences. In this paper, we report on a panel held in London on the occasion of the conference at the Royal Society for Public Health in March, 2017, in which the authors presented.
Key issues discussed included problem framing, the nature of evidence, the politics of power and influence, and the development of effective interventions. In this paper, we review the rejection of two policies, one on dementia and one on the arts and humanities in public health, by the American Public Health Association; the emergence of policies in the UK; and some of the state of the art practices, particularly in training, again focusing on the UK.
; pp. 785–797

Table of Contents
Volume 17 Issue 5, July 2018

Use of the physical environment to support everyday activities for people with dementia: A systematic review

 R Woodbridge;  MP Sullivan et al
Difficulty with everyday activities is a key symptom and defining feature of dementia, relating to subjective reports of well-being and overall quality of life. One way to support individuals in their daily activities is by modifying the physical environment to make it easier to interact with during activity performance. This systematic review explores the range of studies available using physical environmental strategies to support performance in everyday activities for people with dementia.
Physical environmental strategies included changes to the global environment and to architectural features, use of moveable environmental aids and tailored individual approaches. Strategies supported general everyday activity functioning (N = 19), as well as specific activities, particularly mealtimes (N = 15) and orientation in space (N = 16); however, few studies were found that focused on aspects of personal care such as dressing (N = 1) and showering or the preferred hobbies of individuals (N = 0).
Overall, there appeared to be a lack of research within private home environments, and of studies which specify the dementia syndrome or the whole neuropsychological profile of people with dementia. More work is needed to extend theoretical understandings of how people with dementia interact with their environments so that these spaces can be designed to further support activities of daily living performance. Future work in this field could also incorporate the perspectives and preferences of those living with dementia.
; pp. 533–572

Medical students’ views about person-centred communication in dementia care

Ellen StClair Tullo;   Tony Johnstone Young
Adopting principles of person-centred communication has been highlighted as one strategy to improve care of people living with dementia (PLWD) in health and social care settings.
However, person-centred communication is interpreted and applied variably in different settings, and healthcare professionals’ views about communicating with PLWD are under-explored.
This study aimed to investigate medical students’ views about the principles and applicability of a model of person centred communication –
Students generally endorsed the person-centred approach to communication, but two aspects were highlighted as complex and divisive – the acceptability or otherwise of lying, and of communicating with family in advance of the PLWD. We discuss the nature of these communicative dilemmas, implications for the education and training of medical students, and future directions for research.
; pp. 573–584

Family caregivers’ reports of hospitalizations and emergency department visits in community-dwelling individuals with dementia

 Megan Benner;   Victoria Steiner et al
Individuals with dementia in the United States have higher rates of hospitalizations and emergency department visits compared to those without.
This descriptive study examined the frequency of hospitalizations and emergency department visits among community-dwelling individuals with dementia, reasons for hospitalizations and emergency department visits, and caregivers’ actions to prevent these events.
Twenty-two percent of caregivers reported that their care recipient stayed overnight in the hospital and 30% reported that their care recipient visited the emergency department at least once in the past three months.
The most frequent reasons for hospitalization and emergency department visits, such as urinary tract infections and fall-related injuries, were potentially avoidable. Caregivers reported giving medications, seeking healthcare services, and obtaining home care services, as the most frequently used preventive actions. Family caregivers of individuals with dementia should be provided substantive education about preventable hospitalizations and emergency department visits.
; pp. 585–595

Ethical implications of the perception and portrayal of dementia

 Debby L Gerritsen;   Jan Oyebode et al
The way we perceive and portray dementia has implications for how we act towards people with dementia and how we address the issue of dementia within society. As a multi-disciplinary working group, established within the framework of the European Dementia Ethics Network of Alzheimer Europe, we aimed to describe the different ways that people with dementia are perceived and portrayed within society and to consider the moral implications of this. In the current paper, we address perceptions of dementia as reflected in explanatory models of its cause and nature, descriptions of characteristics of people with dementia, the use of language, media portrayals and the views of people living with dementia. Academics and professionals could use this exploration to reflect on their behaviour and their use of language regarding people with dementia.
First Published June 10, 2016; pp. 596–608
Innovative Practice

Effect of horticultural therapy on wellbeing among dementia day care programme participants: A mixed-methods study (Innovative Practice)

Jodi Hall ;  Gary Mitchell et al
Fourteen people attending an adult day programme were recruited to a structured horticultural therapy programme which took place over 10 weeks. The effects were assessed using Dementia Care Mapping and questionnaires completed by family carers. High levels of wellbeing were observed while the participants were engaged in horticultural therapy, and these were sustained once the programme was completed. This study adds to the growing evidence on the benefits of horticultural therapy for people with dementia who have enjoyed gardening in the past.
; pp. 611–620

Recruitment challenges and strategies: Lessons learned from an early-stage dyadic intervention (innovative practice)

Sarah M Szabo;  Carol J Whitlatch et al
An increasing number of family caregivers are seeking services and support due in large part to the dramatic increase in the number of older adults obtaining dementia diagnoses. This paper describes barriers and challenges experienced by our research team in recruiting early-stage dementia caregiving dyads into research studies. Effective recruitment and screening strategies to address these barriers are also discussed. Recruitment and enrollment success depends on these strategies as well as having well-trained recruitment staff who are knowledgeable about the study and have experience working with older adults, and more specifically, persons with dementia.
; pp. 621–626


Gardens that care : planning outdoor environments for people with dementia

Behaviour symptons associated with dementia account for many negative health outcomes, such as decline in functional status, social engagement and physical activity. They also increase the cost of care. The management of these behaviour symptons associated with dementia is complex. Some strategies focus on prevention or management by medication while others focus on the environment. As we age our ability to adapt to less than optimal conditions becomes more difficult, making the role of the environment increasingly important, particularly for those who are experiencing cognitive difficulties and diminishing physical dexterity. Provision of environmental support to maintain function as long as possible is increasingly being recognised as a way to address the psychosocial needs of individuals with dementia.

Transforming the quality of life for people with dementia through contact with the natural world : fresh air on my face 

This book demonstrates why we should provide the opportunities for people with dementia to experience the great outdoors. It also gives a voice to people with dementia who have felt the benefit of getting closer to nature. The contributors explore many different ways in which people with dementia can experience and interact with nature through pursuits such as farming, gardening and walking, and the book includes a chapter on the therapeutic, life-enhancing effects of activities with animals. The book includes descriptions of projects and initiatives from around the world that have revolutionised the everyday experience of people with dementia, and made a real difference to their quality of life. Illustrated with photographs amply demonstrating the power of nature to lift the spirits and enrich life, the book will be an inspiring guide for relatives, carers and professionals who want to help people with dementia lead a richer life, experience nature fully and enjoy its many accompanying benefit.

Designing outdoor spaces for people with dementia

In many facilities for people with dementia, there is often little or no access to the outdoors and to fresh air. Research shows that there are considerable benefits that come from spending time outdoors and having a good view out from a building. So, why is it that people living with dementia, often have poor access to outside spaces and the benefits that come from being outside?

'Designing Outdoor Spaces for People with Dementia' is a book that discusses how to effectively use outside spaces for people with dementia. The book is not an academic guide to research but a book for people in practice. It is filled with case studies of real examples from all over the world. The book is edited by internationally respected Mary Marshall and Annie Pollock.

Outdoor environments for people with dementia 

edited by Susan Rodiek and Benyamin Schwarz
Mounting evidence reveals that nature and outdoor environments provide individuals with dementia greater enjoyment in life, lower stress levels, and positive changes to physical well-being. Outdoor Environments for People with Dementia explores how fulfilling the fundamental genetically based need of human relationships with nature can improve the health and well-being of people with dementia. Top experts analyse current research and comprehensively examine how the design processes of gardens and parks can be closely connected to effective interventions. Evaluation tools for those with dementia are discussed, including studies of the impact of plants and outdoor activities on this population.

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Exposure to nature gardens has time-dependent associations with mood improvements for people with mid- and late-stage dementia: Innovative practice

Piran CL White ;  Jonathan Wyatt et al
Exposure to green space and nature has a potential role to play in the care of people with dementia, with possible benefits including improved mood and slower disease progression. In this observational study at a dementia care facility in the UK, we used carer-assessed measures to evaluate change in mood of residents with mid- to late-stage dementia following exposure to a nature garden. We found that exposure to nature was associated with a beneficial change in patient mood. There was a non-linear relationship between time spent outdoors and mood outcome. Improvements in patient mood were associated with relatively short duration exposures to nature, and no additional measureable increases in mood were found with exposures beyond 80–90 minutes duration. Whilst further investigation is required before causality can be determined, these results raise important questions for policy about the integration of outdoor space into the design of dementia care facilities and programmes.
; pp. 627–634

Book Review

John Keady, Lars-Christer Hydén, Ann Johnson and Caroline Swarbrick (eds), Social research methods in dementia studies: Inclusion and innovation
 Andrew Clark
There is a long history of inclusion, innovation and creativity in the methodologies and methods of the social sciences. Yet curiously, Dementia Studies have been less prominent in debates and developments, at least where the research practice is concerned, arguably preferring to make use of interviews, focus groups and (non) participant observation. Yet as the editors note in their introduction to this text, the embedding of dementia-related research, care-practices and policy into frameworks of citizenship, participation and personhood, has called for the development of approaches that can better understand the relational, contextual, experiential and ‘everyday’ dimensions of life for people living with the condition. So, any text that brings together emerging and more experienced researchers to outline how they have developed applied alternative methods and approaches to their work is to be welcomed and, perhaps, long overdue.
The book is aimed at undergraduate and postgraduate students, and post-doctoral researchers. The 12 chapters and Introduction offer less of a cook book or ‘how-to-do’ methods compendium and more a collection of frank accounts permeated with a sense of enthusiasm and commitment to working with, rather than on, people living with dementia. The absence of philosophical and methodological posturing in favour of to-the-point accounts will find favour with much of the book’s core student readership. The book is arranged across three sections. The first comprises the Introduction and a chapter that presents a framework for involving people living with dementia. The second deals explicitly with participatory and visual media, while the third outlines the application and innovation of a range of further methods including art, story-telling and ethnography. In addition to the four editors there are 22 individually named authors as well as one network of individuals living with dementia operating as a collective organisation.
this book deserves to become a staple of Dementia Studies’ reading lists, its insights should be welcomed by anyone aspiring and committed to achieving a more inclusive research agenda.
; pp. 635–636