February 23, 2018

Understand what family members really want from a dementia care home

*these articles and books and Eresources are available to members of dementia Australia NSW by emailing NSW.Library@dementia.org.au

Needing a real quality dementia care home

This DVD shares two family experiences on what to look for in a care home. It can be used as a learning tool by families or staff examining what ingredients make up real quality dementia care. 

Benefits: Families watching this DVD will be guided on how to choose a dementia care home.

Directors, Managers, Trainers, Nurses and Care Staff will be able to identify what families are really seeking from a dementia care home.

This DVD features David Sheard interviewing two family members on their experiences in choosing a care home for their husband and mother. Di de Woolfson and Lesley Lawson share very eloquent and emotional accounts of why finding the right ‘home’ really matters. 

Key Learning Messages

• Noticing the important things that make up a feeling of ‘home’ matters

• Engaging with your emotions and gut instincts counts when choosing a care home

• Examining the quality of life of people living and working together in a ‘home’ tells you a lot

• Delving beyond the visual aspects of a ‘home’ to see the real care is key

Most difficult decision: dementia and the move into residential aged care : Discussion paper 5 
some aims: 
• improved quality and timeliness of information about moving to a RACF
• psychosocial support to negate the impact of emotional stress
• the adoption of a staged approach to ‘sharing the care’ through easier access to carer respite in a RACF
In addition, carers felt that other aspects which would improve the experience of moving and settling in to a new environment include:
• staff skilled in delivery of quality dementia care
• a higher staff to resident ratio
• provision of meaningful, inclusive activities which interest the person with dementia
• a warm and welcoming environment that is characterised as ‘home like’
• strong leadership and management skills to promote quality dementia care before, during and after the placement of the person with dementia into residential care.

Stages of senior care : your step-by-step guide to making the best decisions

Using their experience running a successful international company providing in-home, non-medical services for seniors, husband-and-wife founders of Home Instead Senior Care offer a helpful guide for families choosing among home care-giving and other assisted-living options for aging or ailing parents. 

The Hogans believe in helping seniors stay in their homes as long as possible, and knowledge is their most powerful tool in securing that goal; this well-researched volume is packed with information, advice and resources aimed at managing and ameliorating the sadness, confusion, guilt and anxiety of making quality-of-life decisions for a loved one. 

Emphasizing the need for planning, the Hogans offer a list of signs that indicate it’s time to consider additional care, as well as a thorough exploration of the options, including pros and cons, questions to ask and other factors when choosing among home care, senior centers, assisted living and nursing homes. The Hogans also consider options for children who live far away from their parents, and advice on what to do when siblings find themselves in disagreement. Recognizing that there is no one-size-fits-all solution, this salient volume compassionately addresses a full range of hard-to-discuss subjects, including funeral services and bereavement.

The family guide to Alzheimer's disease : transitions DVD 
In this final volume, you’ll learn how to make some difficult transitions. You’ll learn how to adapt social activities to accommodate your loved one’s increasing disability and isolation. You’ll also learn how to recognize when the time has come to consider moving your loved one to a care facility (and how to evaluate these facilities). You’ll learn how the disease affects a person’s spirituality, and you’ll gain insights from others who have gone through the process of grieving the loss of a loved one for whom they have provided years of care.

A common sense guide to aged care : choosing the right type of care for you or your loved one
This book is designed to help people make an informed and balanced decision on how to best care for their loved ones when they are ageing or dealing with dementia. It examines the benefits and drawbacks of the various care options available and compares them according to the needs of each individual. It also provides detailed practical advice on how to make a home a suitable and safe place to live. Through check-lists and questionnaires, this book answers some of the important questions that arise when assessing a person's need for care and ease some of the guilt that might be associated with making those decisions.

Developing Excellent Care for people living with Dementia
Author: Caroline Baker

This book is directed at all carers-nurses, managers, general staff and activity coordinators in aged care for dementia residents. The author is in the process of training all staff in Dementia care units in the UK in the 4 Seasons Health Care  their 250 special dementia units. They have developed the PEARL program (Positively Enriching and Enhancing Residents Lives). The main theory behind this program is the concept of person-centred care. The program has been very successful based on their current evaluations.

I felt challenged when reading this book as to whether do we pay lip service to the much touted concept of person-centred care?

I particularly like this very readable book because it explains in very understandable language what person-centred care really is and uses case histories and scenarios to demonstrate the difference between the older medical model of care and how person-centred care can really be successful despite concerns that person- centred care requires many more staff to achieve its goals. The whole concept is a change from a task orientated approach to general care to one that will provide pleasure to the resident and relieve the frustration that does occur from unmet needs.

One of the suggestions is the use of a life history about each resident that is readable and is a work in progress so the care person can know as much as possible about a resident – more than just the basic family and past life experiences. An a4 page of documentation written in un-clinical terms that tells you about their preferences, likes, dislikes and particular needs, may give an indication to character traits and behaviours that are negative indicating unmet needs and frustration. If all staff has a good understanding of each resident they can work together as a team providing the best outcome for that resident. One idea I would really adopt is having a short history (approved by the resident) indicating these preferences for any person working with or visiting that resident with a picture (maybe when younger) displayed on their bedroom entrance.

Every aspect of care is covered in chapters such as- Making the most of meal times, reducing distressed reactions and Reviewing the use of anti-psychotic medication.

Staff is encouraged to support each other and provide feedback on adapting this model and celebrating their success.

This book would be very useful to activity staff that has difficulty working with all care staff to provide excellent lifestyle outcomes for their dementia residents.

I commend it to all care staff, diversional therapists and activity coordinators and educators who need to see that aged care is not just for or to but integrated with the preferences and lifestyle needs of each resident living with dementia. In Australia as consumer- directed care where wellness and reablement is being encouraged in the aged care sector, this book has many common sense ideas to offer all care staff.

+ these books are available to borrow right now from our dementia-e-library

You can download the digital resources 24-hours a day, 7-days a week from anywhere! And there’s also no postage costs.

This new service, is free library members, . You can now borrow popular digital media anytime, anywhere by visiting the e-library at: https://dementia-e-library.overdrive.com and entering your login.

February 22, 2018

Dementia – The international journal of social research and practice,

*these articles and books and Eresources are available to members of dementia Australia NSW by emailing NSW.Library@dementia.org.au

Volume 17, Issue 1, January 2018
Implementing Montessori Methods for Dementia™ in Ontario long-term care homes: Recreation staff and multidisciplinary consultants’ perceptions of policy and practice issues
 Kate Ducak ;  Margaret Denton,  Gail Elliot
Montessori-based activities use a person-centred approach to benefit persons living with dementia by increasing their participation in, and enjoyment of, daily life. This study investigated recreation staff and multidisciplinary consultants’ perceptions of factors that affected implementing Montessori Methods for Dementia™ in long-term care homes in Ontario, Canada. Qualitative data were obtained during semi-structured telephone interviews with 17 participants who worked in these homes. A political economy of aging perspective guided thematic data analysis. Barriers such as insufficient funding and negative attitudes towards activities reinforced a task-oriented biomedical model of care. Various forms of support and understanding helped put Montessori Methods for Dementia™ into practice as a person-centred care program, thus reportedly improving the quality of life of residents living with dementia, staff and family members. These results demonstrate that when Montessori Methods for Dementia™ approaches are learned and understood by staff they can be used as practical interventions for long-term care residents living with dementia.
 pp. 5–33

books on Montessori method include :

Relate, motivate, appreciate: an introduction to Montessori activities [booklet and DVD]
Alzheimer's Australia Vic
Meaningful experiences that engage are important for us all, and this does not change when someone develops dementia.  Engaging visits are an important part of the person's life, regardless of whether they are living at home or in residential care.  They may not be able to remember the details of the interaction, or that you visited at all, what is important is what they experience in that moment of being with you.

You say goodbye and we say hello : the Montessori method for positive dementia careThis book shows how to use The Montessori Method for memory support and creating a positive environment and how this can deepen the connection between caregivers and the people they care for. 

A therapy technique for improving memory: Spaced retrieval 1 Jennifer A. Brush and Cameron J. Camp
A memory intervention called Spaced Retrieval has been found to improve retention of information in clients with memory impairment. This workbook takes speech-language pathologists and occupational, physical, music and art therapists, step-by-step through this useful technique. The book includes a review of the research, case studies, detailed instructions, helpful resources, and reproducible work sheets for use during therapy sessions. All are designed to help clients reach their therapy goals.

Montessori-based activities for persons with dementia : volume  2  

by Cameron J. Camp
Montessori-Based Activities for Persons with Dementia, Volume 2 is the follow-up companion to Myers Research Institute's first volume. This manual represents the culmination of years of effort involving a large number of people. In preparing Volume 2, the authors incorporated reader feedback into the development of new activities programming for individuals with dementia and other cognitive disorders (such as adults with developmental disabilities).
The manual contains all new Montessori-Based activities, including: Activities for individuals and groups, Intergenerational activities, Activities for men, Subject-based activities, and Activities for restorative care/nursing rehabilitation, Activities for restorative care/nursing rehabilitation practices.
This manual provides step-by-step instructions and guidance for creating and conducting each activity. Also provided are tips for extending activities, making them more or less difficult and addressing challenges that may occur.

*and available on the Elibrary 

    • Episodic memories of relationship quality, procedural knowledge of attachment scripts, and the experience of daughters caring for a parent with dementia
      Cory K Chen,  Robert W Bailey
      A caregiver’s attachment history with their parents may affect the thoughts, feelings, and behavior they now have as they care for a parent with dementia. Participants were 77 daughters of a parent with dementia. The nature of participant conscious episodic memories of their parental figures and unconscious procedural knowledge of caregiving processes (secure base script knowledge) were identified as two aspects of the caregiver’s relationship history that may impact their involvement in care, relationship conflict, critical attitudes, and strain. Our findings indicated that the nature of episodic memories of the caregiver relationship history with parental figures were significantly associated with stress and criticism of their parent. Greater unconscious procedural knowledge of the secure base script was associated with caregiver report of less conflict and less involvement in the caregiving tasks. Potential clinical implications of this pattern are also discussed.
      First Published February 15, 2016; pp. 61–77

      The bereavement experience of spousal caregivers to persons with dementia: Reclaiming self
       Shelley Peacock,  Melanie Bayly,  Kirstian Gibson,  Lorraine Holtslander,  Genevieve Thompson,  Megan O’Connell
      Spouses of persons living with dementia both anticipate future loss and grieve for multiple losses occurring with caregiving and this ultimately influences their bereavement experience. 
      Little research has been conducted regarding the bereavement experience in the caregiving journey with dementia and what does exist is mostly quantitative in nature. The purpose of this study is to describe the bereavement experience of spousal caregivers (n = 10) utilizing Thorne’s interpretive description. Thematic analysis revealed the features and facilitators of the bereavement process for spousal caregivers to persons with dementia. The unique contribution of this study to the dementia literature is the finding that the overall process of reclaiming self is significant to the bereavement journey. Future work should investigate identity as understood by spousal caregivers to persons with dementia, and further explore the processes, facilitators, and barriers to healthy bereavement in this population.
       pp. 78–95

       ‘Getting to Know Me’: The second phase roll-out of a staff training programme for supporting people with dementia in general hospitals
       Ruth Elvish,  Simon Burrow,  Rosanne Cawley,  Kathryn Harney,  Mark Pilling,  Julie Gregory,  John Keady
      The aims were to evaluate a second phase roll-out of a dementia care training programme for general hospital staff and to further develop two outcome scales: the Confidence in Dementia scale for measuring confidence in working with people with dementia and the Knowledge in Dementia scale for measuring knowledge in dementia.

      Staff knowledge in dementia and confidence in working with people with dementia significantly increased following attendance at the training sessions. The findings are consistent with preliminary findings and strengthen current knowledge about the impact of dementia care training in general hospitals. The Confidence in Dementia and Knowledge in Dementia scales continue to demonstrate psychometrically sound properties and demonstrate utility in the field of dementia research
       pp. 96–109

      Factors facilitating dementia case management: Results of online focus groups

       Jacomine de Lange,  Eline Deusing,  Iris FM van Asch,  José Peeters,  Marieke Zwaanswijk,  Anne Margriet Pot,  Anneke L Francke
      To obtain insight into facilitating factors for case management in dementia care, we conducted a qualitative study with 13 online focus groups (OFGs). Participants were professionals involved in dementia case management (N = 99). We used mind-maps and the method of constant comparison for analysis. Participants perceived OFGs as a useful tool to explore their perspectives. The perceived advantage of OFGs was the flexibility and convenience of logging in at any time or place preferred. Five facilitating factors for case management were identified in the OFGs: 1. Good cooperation between partners; 2. Organisational embedding with an independent position of case managers; 3. Structural funding; 4. Competent case managers; 5. Familiarity with case management in the region. Good cooperation was essential for successful dementia case management and should thus be a primary concern for care providers.
      pp. 110–125

      Book Reviews

      Christine Bryden, Nothing about us, without us! 20 years of dementia advocacy
       Katie A Davis
      No-one knows what it is truly like to live with dementia unless, like Christine Bryden, you
      are living with dementia yourself. This is Christine’s third published book on her journey
      living with dementia and chronicles 20 years of activism and advocacy. This book is a
      written collection of talks and presentations that Christine has given over the past two
      decades and will appeal to people with both a professional or personal interest in the subject.
      Being diagnosed at such a young age (46) and with three young children, it is crucial for
      the reader to have this understanding of her history, to consider the impact of dementia on
      Christine as an individual but also on her young family. Christine intimately describes the
      impact her diagnosis had on the family unit and how she channelled her own thoughts and
      feelings into writing her first two books on her experiences. Within this book, there is significant discussion of Christine’s religious faith and beliefs which may prove uncomfortable for some readers; however, it only highlights how people living with dementia seek strength from different outlets and reinforces the individuality of the person, without focus on the disease.
      From her diagnosis in 1995, Christine was told it was likely she would steadily decline over the next five years until she was in full-time care, followed by death three years later. This monologue, published over 20 years later, challenges and confronts that defining prognosis.

      Christine gives us a real insight into living with dementia whilst challenging the stigma
      and prejudices attached to the condition that sadly still exist. She refuses to be labelled and
      strongly advocates for the support of people living with dementia as opposed to the traditional support of only their carers. Christine gives an honest account of being an advocate, whilst acknowledging the struggles she endured with coming to terms with her diagnosis and the associated anxiety and burn out. This is a strong and powerful read that I would recommend for anyone with any interest or connection to dementia, professional or personal.

      borrow from the library

      Chris Clarke and Emma Wolverson (eds), Positive psychology approaches to dementia
       John Keady
      This is a ground-breaking book. It is also an important book as it challenges (past) negative
      discourses in dementia and sets out a new direction for dementia studies and everyday
      clinical practice. As the name of the text suggests, the focus is squarely on affirming person-centred values with each of the chapters presenting positive psychology understanding/themes and their application to living well with dementia.
      In the hands of less experienced editors, advancing this understanding could be seen as a form of idealism as, at times, the lived experience of dementia can dance uncontrollably to the tune of stress and distress, emotions that ripple through the generations and into the communities where people with dementia live. However, to their enormous credit, the editors do not shirk from this critique/responsibility and emphatically stress that a balance needs to be struck between idealism and realism. Idealism as expressed through the positive narrative of the text and realism in that this will not be everyone’s experience.
      In their opening chapter of the book, the editors make a convincing case for positive psychology to act as this new frame of understanding.
      There is a direct link, for example, from positive psychology to the work of professor Tom Kitwood where love, identity, comfort and attachment were identified as important psychological needs for people with dementia (well, for all human beings, it could be argued). In the book itself, there is an Introduction and 12 chapters preceded by a really interesting Foreword written by Christine Bryden who, herself, lives with a dementia and has published autobiographical texts on her experience. Christine provides an emphasis on living ‘in the now’ in the Foreward and I cannot help but feel that this sentiment is evident throughout each of the 12 chapters.
      Indeed, the first two chapters cover a review of ageing/positive psychology and then separate chapters on well-being, hope, humour, resilience, growth, creativity, spirituality, relational practice, positive caring approaches and a final chapter (involving both editors) that draws together the entire book and looks forward to a new beginning in the field.
      It is difficult to pinpoint highlights from these contributions, but I would like to draw attention to the topic of resilience in dementia which is authored by my fellow co-editor of the Dementia journal, Professor Penny Harris, and a really interesting chapter on creativity and dementia by John Killick.
       In this latter chapter, John begins to make links to the importance of in-the-moment experiences and meaning making between people with and without dementia.
      Human creativity is a central to making this happen and evaluating such approaches is not side-stepped either, especially when such engagement is usually highly individualised and biographically centred.
      This is an excellent book which deserves to be read by as wide an audience as possible; for example, it would be as valuable for people with dementia as it is for practitioners, students and academics.
      …I wholeheartedly recommend this book.      pp. 127–127 

      from the eLibrary

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