Reminiscence in Dementia Care – An Extract from ‘Remembering Yesterday, Caring Today’.

'Remembering Yesterday, Caring Today' cover image

‘Remembering Yesterday, Caring Today.’

This week is Dementia Awareness Week in the UK, so we thought it would be the perfect time to share an extract from one of our classic books on using reminiscence to improve the quality of life for people with dementia.

This excerpt has been taken from the book Remembering Yesterday, Caring Today  by Pam Schweitzer and Errollyn Bruce, published by Jessica Kingsley Publishers.

Schweitzer and Bruce – ‘Remembering Yesterday, Caring Today’ – extract

Visit our website to get additional information or to order a copy of Remebering Yesterday, Caring Today by Pam Schweitzer and Errollyn Bruce.

Request a free copy of JKP’s latest catalogue on dementia

Our latest catalogue on Dementia and Elder Care is now available. With full information on our new and bestselling titles, this catalogue is a tremendous resource not only for those working with people affected by dementia, but also for family members, friends and anyone who works with the elderly. The catalogue includes practical books for professionals, manuals on how to incorporate creative approaches into dementia care, as well as guides on coping with dementia for friends, family and individuals who are themselves affected. Dementia catalogue cover

To receive a free copy of the catalogue, please sign up for our mailing listand we’ll get one out to you right away. You may also request multiple copies to share with friends, family, colleagues and clients–simply note how many copies of the catalogue you would like (up to 20) in the ‘any additional comments’ box on the sign-up form.

We hope you will take advantage of this opportunity to get more information about our outstanding new titles such as Dementia – Support for Family and Friends by Dave Pulsford and Rachel Thompson and Can I tell you about Dementia? by Jude Welton. The catalogue also features information on bestselling titles such as Leadership for Person-Centered Dementia Care  by Buz Loveday and Playfulness and Dementia by John Killick, as well moving personal accounts of the experience of dementia such as Dancing with Dementia and  Who will I be when I die?  from Christine Bryden.

Click this link to see a listing of new and recent titles from Jessica Kingsley Publishers’ Dementia list.

To request a copy of the JKP catalogue of books on Dementia and Elder Care, please click here to fill out our sign-up sheet. Please be sure to click any additional areas of interest as well. You should receive a copy of the catalogue within two weeks.

Occupational therapist Jackie Pool interviewed by OT Expert website

It is currently Occupational Therapy Week in the UK from 5-11th November 2012.

Jackie Pool, a specialist trainer in the field of dementia care, was interviewed by OT Expert website recently on the subject of her book, The Pool Activity Level (PAL) Instrument for Occupational Profiling.

In this audio interview, Jackie talks about how occupational therapy techniques can really make a difference to the lives of those with dementia, and those caring for them.

Listen to the full interview on the OT Expert website here:

http://otexpert.co.uk/2012/10/the-pool-activity-level-pal-instrument-for-occupational-profiling/

VIDEO: ‘The Funshop’ – John Killick using playfulness in dementia

John Killick demonstrates some of the playfulness techniques showcased in his new book, Playfulness and Dementia: A Practice Guide in the video below.

Professor Dawn Brooker, Director of the Association for Dementia Studies, University of Worcester says:

“This book tickled my fancy. Just as many lonely hearts advertisements specify a GSOH as their top priority in a soulmate, I would specify the same requirement for those providing support and care to me and my family. This is not to trivialise the experience of living with dementia, but rather a recognition that laughter can help us through the most difficult places. This book is full of ways to connect people through fun. There is nothing disrespectful or silly about the words in this book. It is full of compassion and honesty. It will supply you with a springboard to joy.”

Watch Playfulness and Dementia in action:

 

Exclusive 20% discount for UK Dementia Congress delegates!

JKP are offering 20% off new release Dementia – Support for Family and Friends by Dave Pulsford and Rachel Thompson to all delegates of the UK Dementia Congress 2012!

To redeem this offer, simply print off the coupon below and bring to stand 15 before 12:00 on 1st November.

To celebrate the release of this book, JKP are hosting a book launch at the Congress on 30th October at 7.30pm, where author Rachel Thompson will be speaking. The event will also celebrate the launch of the two latest additions to the Bradford Dementia Group Good Practice Guides, those being Playfulness and Dementia by John Killick, and Leadership for Person-Centred Dementia Care by Buz Loveday.

Looking forward to seeing you all there!

20% off coupon:

http://enews.jkp.com/ukassets/images/335/10-2012-Coupon-PulsfordandThompson-Dementia(RM).pdf

Supporting family and friends of loved ones with dementia

In honour of World Alzheimers Day 2012 Dave Pulsford and Rachel Thompson, authors of the forthcoming book Dementia – Support for Family and Friends, share their thoughts on a recent dementia survey conducted by BUPA Care Homes.

If a member of your family or friend developed dementia and you found yourself caring for them, would you know what to do?
Would you understand the nature of the person’s condition and how it will progress? Would you know how to reply to the person when they talk about things that you find hard to understand?
Would you know what to do when they act in ways that are out of character, or which may possibly be risky to themselves or others?

If you answer “no” to any of these questions you will not be alone. In a recent survey by BUPA Care Homes, two fifths of respondents felt that they would lack the understanding or skills to care effectively for a person with dementia.

We are not surprised that this figure is relatively low. How could anyone know how to care for a person with dementia if they have not had to do so before? Just as new parents often struggle with the skills of childcare, carers of people with dementia frequently find themselves at a loss and their situation is often not helped by the absence in the early phase of dementia of proactive support from professional services.

Small wonder that carers of people with dementia seek outside sources of support and information. Some join support groups convened by organisations such as the Alzheimer’s Society and Uniting Carers, Dementia UK. Others seek information on the internet and there are a number of good web sites, including those of the Alzheimer’s Society and Dementia UK.

Others prefer the familiarity of a book that they can carry around and refer to for information on specific issues; that tells them about dementia and offers advice on how to help the person, discussing a range of caring principles and situations. There is a growing choice of such books on the market.

Our own book, Dementia – Support for Family and Friends will shortly join the catalogue of books for family and friends of people with dementia. It offers a practical approach to understanding and supporting people with dementia at different stages of the journey, includes tips for how to respond to different situations and is informed by the experiences of carers.

Whichever means you choose, we would urge you to seek support and advice if you are caring for a person with dementia. It is a sometimes difficult and bewildering role, but with the right help the person can achieve a good quality of life and “live” with dementia rather than “suffer from” dementia.

Join us at these upcoming National Autistic Society events featuring JKP authors!

The Who Cares? conference will examine the unique challenges facing adults with autism as they age, and present best practice from experts in the field including JKP authors Dr Wendy Lawson, author of The Passionate Mind and Understanding and Working with the Spectrum of Autism, and Professor Digby Tantam, author of Autism Spectrum Disorders Through the Life Span.

10 October 2012  |  London  |  More Info & Bookings »

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

The Women and Girls on the Autism Spectrum conference will present the latest research and practice in diagnosis and support for women and girls with autism.

Featuring presentations by JKP authors Liane Holliday Willey, Sarah Hendrickx, Bettina Riese-Stott, and a special book signing with Jennifer Cook O’Toole.

16 October 2012  |  Birmingham  |  More Info & Bookings »

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – - 

An Evening with Liane Holliday Willey is a unique opportunity to hear the world-famous author speak about her life and experiences, ask her questions and purchase signed copies of her bestselling books, including Pretending to be Normal and Safety Skills for Asperger Women.

17 October 2012  |  London  |  More Info & Bookings »

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – - 

An Evening with Jennifer Cook O’Toole is a fantastic opportunity to hear the Asperkids author share the unique teaching strategies, parenting perspectives and ‘Aspie’ insight that has won her some of the most coveted prizes for outstanding contributions to the lives and families the world over. You’ll also have a chance to buy signed copies of her new book, The Asperkid’s (Secret) Book of Social Rules.

23 October 2012  |  Manchester  |  More Info & Bookings »

- – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – -

 The Pathological Demand Avoidance conference will provide professionals and parents with a clearer understanding of the diagnostic criteria for pathological demand avoidance syndrome (PDA).

Featuring a presentation by Phil Christie and Ruth Fidler, co-authors of Understanding Pathological Demand Avoidance Syndrome in Children.

15 November 2012  |  Edinburgh  |  More Info & Bookings »

Spiritual reminiscence work with people with dementia – The Role of the Group Facilitator

Finding Meaning in the Experience of Dementia by Elizabeth Mackinlay and Corinne Trevitt is based on the findings of the first major study on spiritual reminiscence work with people with dementia. This extract explains the role of the facilitator in spiritual reminiscence groups.


The communication strategies demonstrated by the facilitator could ‘make or break’ a group. When listening to the recordings of spiritual reminiscence groups it was interesting to note how much the difference between responses depended on the group facilitator’s style. Prior to the commencement of the project in each facility, the group facilitators had training in techniques to enhance their communication and group facilitation skills. The research assistant present at all the group sessions was of considerable assistance in assisting with challenging communication issues and in debriefing the facilitator at the completion of each session. It was good if the facilitator had had the experience of being a participant in a spiritual reminiscence session, prior to facilitating a group themselves.

The facilitator had to be very comfortable with the notion of personhood and be able to identify the behaviours that led to ‘malignant social psychology’ (Kitwood 1997). In addition, s/he needed to have a good understanding of the elements of behaviour that encourage person-centred care and also the guidelines for managing reminiscence activities. In the following example the facilitator gave as much time as needed to help Jessica find what she wanted to say. By just affirming that she was still listening, the participant was encouraged to keep going – to try to find the right words. The interaction also identifies how frustrating it can be for people with dementia to join in and contribute when words are difficult to find.

Facilitator: Mmm.
Jessica: I want to do it, but I am slow. And that is the main problem I think, that I am slow at doing these things. I know how to do it, but it doesn’t come.
Facilitator: Mmm hmm.
Jessica: I am slow to get that done, and I keep thinking about it, but it is not coming as quickly as I wanted to, and I am slowly exasperated.
Facilitator: Mmm.

The facilitator also needs to be aware of his/her own spirituality, to be comfortable with the types of questions asked in spiritual reminiscence.

Questions such as:
• What gives you most meaning in your life?
• What does spirituality mean for you?
• What makes you feel happy or sad?
• What has brought you joy?
• What do you look forward to as you come near the end of your life?

Questions of God and religion were also asked in the groups, and facilitators had to be comfortable with their own spirituality so they could facilitate these topics in discussion. One facilitator in the study decided not to continue facilitating a group as, although she felt this was important work and she attended church regularly, she did not feel comfortable speaking about religion with others.

An essential beginning for group work is respect by the group facilitator for the group members and a willingness to meet them where they are in their life journeys. The skills used in small groups are those used by the helping professions – first, active listening and being really present with the participants.

Effective facilitation of group participation includes using appropriate and open-ended questions and then allowing space and silence while the individual reflects. It includes the use of paraphrasing, unconditional acceptance and the skills of focusing and summarising.
In spiritual reminiscence, it is best to focus on the meaning of events and experiences in the lives of the participants rather than simply on the description of the events remembered. This moves the conversation to a deeper level and enables a review of life meaning. Spiritual reminiscence is one of the spiritual tasks of ageing, and as such an important component of the life journey; it is so much more than simply an activity.

*This article is adapted from Chapter Twelve: Maximising Effective Communication.

LGBT people affected by dementia – Roger’s story of care and caring

Roger Newman, MBE shares his experiences of caring for a partner with dementia, and how this led him to set up the first LGBT Dementia Support Group. This extract is taken from Chapter 20, ‘Meeting the Needs of LGBT People Affected by Dementia’ in new book Lesbian, Gay, Bisexual and Transgender Ageing: Biographical Approaches for Inclusive Care and Support, edited by Richard Ward, Ian Rivers and Mike Sutherland.


It is 20 years since my then partner was diagnosed with pre-senile dementia. It was a condition I knew nothing about, let alone its description ‘Alzheimer’s disease’. I assumed he had a rare condition and I certainly knew no other gay men who had anything similar. Moreover, my experiences of dealing with health professionals and service providers suggested that they were also in the dark when faced with a gay carer and a gay man with the condition, so each experience of dealing with them and coping with their responses brought new challenges, not to say frustrations, as they assumed my needs would simply be the same as they were for ‘straight’ spouses.

My experiences as a carer and the heartfelt sense that conditions for LGBT people affected by dementia could be much improved led me to set up the LGBT Dementia Support Group. The formation of this group is not simply a matter of historical interest, however, since the process identifies and reflects key issues that are fundamental to recognising and meeting the needs of LGBT people affected by dementia. Initially, such needs were signposted via my frustration with the consistent use of non-inclusive images in publications produced by the Alzheimer’s Society. I wrote a letter to the Society in which I pointed out that photographs used for the Society’s publicity materials showed Caucasian people surrounded by loving, supportive spouses and, presumed biological, families. I enquired if I was, perhaps, the only person caring for someone with dementia who wasn’t married, or who was the same gender as the person with dementia they cared for.

After launching the phone helpline in the Society’s newsletter, we waited in hope for our first call – and we waited some more! However, one evening we were shocked at hearing the phone ring: our first ‘client’ phoned, and so began a service and a journey of discovery. I think that, to a certain extent, members of the support group had harboured an unconscious assumption that the needs of lesbian and gay carers would simply mirror those of the heterosexual population, but with an added factor of the gay or lesbian carer experiencing discrimination from service providers. However, after listening to the first callers, we soon realised that LGBT carers’ situations may be far more complex than this – we had not accounted for the fact that lesbian and gay relationships may be qualitatively different from those of the heterosexual population, and so any caring issues inevitably reflect those differences. Some of our callers were in contact for years, sometimes our relationships lasted the entire duration of their cared-for person’s dementia. We thus developed friendships and bonds which were, I would argue, deeper and more intense than those experienced in many other helpline situations.

The challenges carers were facing included an inability on the part of service providers to understand and use appropriate language when working with lesbian or gay service users; a widespread acceptance of gay and lesbian stereotypes and myths about the nature of gay and lesbian people’s relationships, and a general lack of awareness of, and frank disregard for the importance of ‘the family of choice’ in the lives of lesbian and gay people.

The group ended when the resources offered by our host were redirected elsewhere and it became impossible to continue. However, many of the issues we identified and the needs we were able to meet did not simply evaporate – in highlighting them in this chapter we hope that dementia service providers and practitioners will feel encouraged to take these forward in their own work.


Commentary from Richard Ward, lead editor of Lesbian, Gay, Bisexual and Transgender Ageing:

“This short passage from Roger Newman, detailing his experiences as a gay man caring for his partner with dementia captures well many of the challenges faced by older LGBT people as they seek to access and make use of health and social care services.

The experience of caring without acknowledgement, recognition or understanding is undermining and at times thoroughly isolating. Yet such conditions currently characterise provision in areas such as dementia care for those who identify as lesbian, gay, bisexual or transgender. As our book on LGBT ageing makes clear, this lack of recognition often does not so much stem from wilful prejudice but a failure to grasp how people’s needs might differ due to their sexuality or gender identity and an unwillingness across research, policy and practice to tackle this gap in knowledge and understanding.

As is so often the case, it is LGBT people working together that have created services and resources such as the network that Roger describes above. But it is long overdue that health and social care services take responsibility for more systemic change. We hope that our book on LGBT ageing marks the beginning of that process.”

Theory, policy and practice of dementia care across the globe – An interview with Anthea Innes, Louise McCabe and Fiona Kelly

Anthea Innes, PhD is Professor of Health and Social Care Research at Bournemouth University, UK, and Fiona Kelly, PhD and Louise McCabe, PhD are lecturers in Dementia Studies at the University of Stirling, UK.

In this interview they discuss their new book, Key Issues in Evolving Dementia Care, which looks at the very latest developments in the policy and practice of dementia care across the globe.


Photo: (left to right) Anthea Innes, Louise McCabe and Fiona Kelly (Credit: Tony Marsh)


Can you tell is a bit about your work and what sparked your interest in dementia care research?

AI: To help finance myself during my Master’s degree studies, I worked part-time as an activities co-ordinator. I was struck that the ‘difficult’ residents were those who had the label dementia. However these were the same people I was drawn towards and really enjoyed working with; the challenge of communicating and finding creative ways to engage with people, of finding meaningful activities for individuals and small groups, was something I really enjoyed. My Master’s dissertation ended up being about care workers’ perceptions of difficult residents as a result. I was then lucky enough to get a post with Bradford Dementia Group, and was also able to register for PhD studies at the same time which looked at changing the culture of care in nursing/EMI and residential care settings. These early experiences have influenced my work. For example, all my research has a user view focus, whether it is trying to find out what staff think, what people with dementia’s views are on aspects of living with dementia or their care, and carers’ experiences. My particular areas of interests within social dementia research are rural service provision, use of technology to promote independent living and the care environment.

LM: Similar to Anthea, during the time I was studying for a Master’s degree I worked as a social care worker in a care home for older people. This work continued long after my degree was finished and led to a period of voluntary work with an organisation in India: the Alzheimer’s and Related Disorders Society of India. This work opened my eyes to the different understandings of dementia and the role of culture in how care and support are provided for people with dementia. This experience helped shape my PhD topic and led to my current academic career. My current work is split between teaching and research. The students we teach are all established practitioners and professionals in dementia care, and their input and interaction in the learning process helps keep us linked-in and up-to-date with practice in nursing, social work and other relevant fields. My research interests focus on culture and lifestyle; exploring how different factors influence development and experiences of dementia.

FK: I had a slightly different journey into the dementia field. I worked as a nurse in Ireland and then as a midwife in Scotland and worked part-time in the neonatal unit of a large maternity hospital. At that time midwives had to work a certain amount of hours in order to remain registered, and I had increasing difficulty maintaining my hours as the unit slowly replaced midwives with newly qualified nurses. Unable to find enough work to maintain my registration, I decided to find work closer to home and phoned up a local care home asking if they needed a nurse. Twenty years later, I still work there one night shift a month and I absolutely love it. While working in the care home I started a degree in social psychology and became fascinated by group processes, identity, ethics, group conflict and behaviour, and started to see links between what I was learning and what I was experiencing and seeing at work. The main goal with my further studies (MSc and PhD) was to integrate my practice experience as a nurse caring for people with dementia with my learning to date and research interests, which centred on creativity, communication and expression of selfhood in people with dementia. This goal has continued and extended throughout my academic career and I use my practice experience to inform my research and teaching and use learning from research and teaching to inform my practice.

Click to read a previewHow did the book come about? Can you explain what makes the book particularly timely?

AI: The idea for the book came from an international conference hosted by the Dementia Services Development Centre in 2010. Some of the book chapters are a development of oral presentations given at the conference. Other chapters are contributions from our international colleagues who did not attend the conference but whose work was a really good fit with the messages we wanted to include in this edited collection. For example, we wanted to ensure that we included chapters that discussed theoretical approaches to understanding dementia that shape and inform both policy and practice across the world.

LM: Since I first started doing dementia research there has been an explosion of literature, and dementia is now a health policy priority in the UK and several other countries. This is the first time that dementia is a political priority, creating drivers for focusing on all aspects of dementia, from anti-dementia drugs, to an increased knowledge about potential risk factors and preventions strategies, as well as innovative ways to provide high-quality support and care. Interest in dementia is therefore at an all time high and this book makes a contribution to theory, policy and practice issues and how these interlink and influence one another.

Did you notice any surprising differences, or similarities, between the approaches the different countries discussed in the book are taking?

AI: Bio-psycho-social approaches are now common place, with different disciplines acknowledging the strengths of different perspectives. A similarity is that a holistic approach to understanding dementia is now being advocated and applied to policy and practice.

LM: I think the striking thing about the policy section is how similar the issues are that are raised in the different countries. While each country has to work within its own social, cultural, economic and political frameworks (and these dictate how changes can be made), there are noticeable similarities in the focus on early diagnosis, hospital care, and including people with dementia in policy development across the different countries.

FK: I was struck, in the chapters of the practice section, by the level of commitment to make things better for people with dementia and those who care for and support them. The innovative approaches discussed share a similar concern to make things better at a local level, while also negotiating the difficulties encountered as a result of insufficient or declining resources.

What are the main challenges to developing theory-based policy and practice, and how will this book help to overcome them?

LM: I think a key challenge is that for many countries we are working within complex, confusing health and social care systems that have been built over time and in response to changing priorities – we cannot start from scratch and design a purpose-built system to provide dementia care. Also, the culture in different countries influences how families and individuals interact with the health and social care systems. The international perspective taken in this book allows and encourages people to look out from their own local and national processes and think about how things are done elsewhere. This broad perspective may help people to think about new ways of doing things. It is always interesting to read about places where change has taken place and where dementia services have developed in a positive way and to learn from these stories.

FK: For me, one of the main challenges is implementing policy in a climate of declining resources in dementia care. By resources, I mean financial input into ensuring that the design of care homes and hospitals is dementia-friendly and ensuring staff who support and care for people with dementia and their families are well trained and knowledgeable and also well remunerated. I also mean a declining workforce of people willing, suitable and available to care for people with dementia. Some of the examples in this book illustrate alternative ways of providing care, for example by using local people to care for people in their own homes, or by trying out small-scale changes in the design of a setting or by encouraging local networks of support. I hope people will be inspired to try out some of the innovative approaches discussed in this book and that, with collective effort, we will make a difference.

Copyright © Jessica Kingsley Publishers 2012.