Karen Watchman on Intellectual Disability and Dementia

Karen Watchman, Lecturer in Dementia at the Alzheimer Scotland Centre for Policy and Practice, and editor of the new book Intellectual Disability and Dementia, joined us for a short interview. She talks about how she became involved in the field, and gives her advice for those working with and supporting people with intellectual disabilities and dementia.

How did you get involved with this area of study?
I spent many years as Director of Down’s Syndrome Scotland where I worked alongside families and people with Down syndrome of all ages. There was even less research conducted about dementia in people with intellectual disabilities at that time which spurred me on to complete a Masters degree in Dementia followed by a PhD researching the experiences of people with Down syndrome and dementia. So, whilst I have an academic interest in this area I am very much grounded in practice and in ensuring that information is made available in an accessible format.
My Great Aunt had Down syndrome and, unusually for the period in which she grew up, lived at home with family into her adult years. So it came as no surprise when research started showing the link between quality of life and increased life expectancy.

 

People with disabilities are living for longer and as a result we are seeing more people with intellectual disabilities than ever develop dementia as they age. What training is available for carers and professionals to help deal with this increase?Watchman Intellectual Disability and Dementia 9781849054225
Typically in the UK, staff, volunteers and carers supporting people with an intellectual disability do not have training in dementia. Similarly, staff supporting older people with dementia do not have training in intellectual disabilities, despite many younger people (especially with Down syndrome) being diagnosed, and some moved inappropriately to care homes for older people.
This is slowly starting to change but there is still not enough interdisciplinary exchange of learning. Training and courses that I deliver where staff attend from across sectors are very valuable, as participants learn from each other. However, it is not just intellectual disability or dementia services – equally important, especially as dementia progresses, is the input of all allied health and palliative professions and that there is partnership working with all services talking to each other and to carers, and all being consistent in their approach.

 

 

Are they any particular methods or activities which are helpful in explaining a dementia diagnosis to someone with an intellectual disability?
This is an area addressed in the book and is something that doesn’t receive enough attention currently. As a result there is inconsistency in practice. Information about a diagnosis or suspected diagnosis of dementia is not routinely shared with the person who has an intellectual disability, despite UK dementia strategies maintaining that everyone has a right to know of their diagnosis. We need to think more about how this can be done with people who have an intellectual disability and embrace non-verbal communication methods too.

 

 

What should staff or carers be aware of in order to be able to support people with an intellectual disability and dementia?
Someone who already works alongside people with an intellectual disability is likely to have been trained to support people to maximise their independence, to work towards independent living or community involvement to the best of their ability. Their work will be person centred and will be focused on the needs of each individual. There is an element or re-learning required by staff when the person with an intellectual disability has a diagnosis of dementia. The work should still be person centred and based around the individual but as capacity and cognitive ability change there is an associated need to change the way that staff, volunteers, family and friends provide support.
Carers also need information about interventions – this may or may not include medication. Social interventions such as meaningful activities and life story work are also essential. Awareness of contraindications with medication is important especially as many people with intellectual disabilities are over-prescribed anti-psychotic medication.
Specific knowledge of dementia that needs to be shared with staff, volunteers, family and friends include: what dementia is, different types of dementia and how each affects the person, early signs (this can differ from early signs in older people without an intellectual disability), environmental adaptation to ensure that accommodation is appropriate to the persons changing needs, communication changes and physical changes that will occur as the condition progresses. I am often asked for help with what is perceived as a behavioural issue, but with appropriate information or training there is a realisation that if we get the environment, communicating and our approach right – this is what has caused the changes in behaviour.  We need to work out the triggers and acknowledge our role in this – often a change in behaviour is caused by us not understanding the person and not providing appropriate support.

Intellectual Disability and Dementia is due to be published May 2014. 
Karen Watchman is the editor of the book as well as an experienced expert in working with intellectual disabilities. 

 

The magic of puppetry in dementia care

copyrightKM2012Writing1BWIn this post Karrie Marshall, author of Puppetry in Dementia Care, describes using the power of puppetry to engage with emotions that go beyond words and memory, and how she was met with a tentative response on first suggesting the idea in adult care work.

When I first started talking about joyfulness in relation to dementia, people found that a difficult concept to consider. At conferences I noticed the majority of terms used to describe dementia conveyed a sense of hopelessness and despair. These difficult feelings are of course very real for many family carers and individuals facing a diagnosis of dementia. However, it is also important to acknowledge the real capacity for humour, positive relations, creativity and enjoyment.

My talks give examples from the book of uplifting experiences shared by people with dementia and their carers (family or paid staff). I love hearing members of the audience talk about their own experiences. People generally want better services or want to know how to improve dementia care. The talks help people see this is possible.

Throughout my career in nursing and lecturing I found people learned more and communicated better in a creative environment. My specialty is puppetry, but all art forms can reduce stress, increase confidence and improve interactions with or without words. I am interested in how we (professional care staff, family carers, relatives, artists and the general public) can use this knowledge to improve quality of lives.

Recently my talk for the Scottish Women’s Rural Institute focused on positive communication. Talks for local libraries give practical tips and creative ideas from the book. My university talks focus on person-centred care and compassion, which are major themes underpinning the book. The talks also offer opportunities to share best practice with carers and artists.

When I first introduced puppetry into adult care work, there was a hesitant response! But puppetry has a long history with adults (making social and political comment). There is also a magical quality to puppets. They engage with emotions that go beyond words or memory. I love the stories in the book that show how people with dementia focus on the puppet and completely ignore the puppeteers, the staff and the relatives!

One of the biggest challenges carers face is around relationship changes. Sometimes the nature of the dementia may mean reduced recognition of a loved one. For others the relatives are dealing with mood swings or behaviour changes. Learning how to let go of the relationship they used to have whilst maintaining a loving and meaningful connection is complex. In the book I show how this process is possible through creativity. First I explore a theory about relationships between care-givers and care-receivers that describes a progression towards alienation.  During talks, audience members give examples of feeling they are losing someone, or of drifting apart.

However, over the past ten years of working creatively with families and care staff and people with dementia, I know people can go beyond alienation. They can re-emerge into a different way of connecting that has moments of pure joy and wonderment. People have different ways of reaching this, but generally we find people with dementia get there faster!

Each experience of dementia is individual, and that is a key message in the book. Not everyone wants to be actively engaged, so we discuss the therapeutic use of silence and breathing in unison. Often I find this leads to participation. It works because people tune into where the person is. The book explores theories about human motivation and the importance of matching individual needs.

One of my favourite stories is about a man who people thought might not be interested in anything to do with creativity and certainly not puppetry.  He turned out to be one of our most enthusiastic participant puppeteers. He helped make a puppet of himself (instructions are given in the book).  This had great presence and character, as so many of the ‘soul puppets’ tend to have.  I often get a sense that the work helps us see people more clearly. Creativity has no boundaries.

It takes a long time – perhaps a lifetime – and a lot of practice to really understand what it means to be person-centred, to genuinely consider and positively respond to individual preferences. Yet this is at the heart of good dementia care. Writing the book helped me explore how we can better do this, and highlights the importance of support for carers to connect confidently and creatively.

 

 

Try out these free activities from ‘Activities for Older People in Care Homes’

Next month sees the release of JKP’s Activities for Older People in Care Homes from Sarah Crockett, the 2010 winner of  the National Association of Providers of Activities for Older People (NAPA) Activity Award.

Activities for Older People in Care Homes cover

Activities for Older People in Care Homes

Here you can get a sneak preview of the book by clicking the link below to download some free activity ideas, which can easily be adapted to suit individual or group purposes, and can also be adjusted to suit differing levels of movement and interaction.

Sarah Crockett – An Activities Handbook – Extract

Visit our website to get additional information or to order your copy of Activities for Older People in Care Homes.

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:

 

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.

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.”

Where is mental health diagnosis heading, and where does the DSM IV fall short?

In this article, Dr. Peter Ladd, co-author of the new book, Person-Centered Diagnosis and Treatment in Mental Health: A Model for Empowering Clients, asks some important questions relating to traditional mental health diagnosis, and shares his own thoughts about where he believes it is heading in the future.


Does the Semantics found in the DSM IV Create a Problem for Clients?

The DSM IV is sophisticated in basing diagnosis in mental health on statistical probability. The Client Empowerment Model of diagnosis in mental health found in Person-Centered Diagnosis and Treatment in Mental Health: A Model for Empowering Clients, (Ladd & Churchill 2012) is sophisticated in presenting a holistic perspective. The lack of a holistic perspective found in the DSM IV may be partially attributed to the semantics found in it. For example, the DSM IV has such labels as Bi-Polar Disorder or Obsessive/Compulsive Disorder. Semantically, a person may incorrectly say, “I am bi-polar or I am obsessive/compulsive.”

From a strictly medical model, such semantics do not make sense. In medicine one does not say, I am cancer or I am stroke. However, with some mental disorders one can personalize them as though they were connected to one’s identity. A client empowerment model does not focus on labels but on patterns. For example, a person might say, “I have a pattern of bi-polar disorder or I have a pattern of obsessive/compulsive disorder. These statements are not connected to one’s identity. They are accurate semantic statements of a pattern they are in. Such unsophistication in DSM IV labels may lead to increasing the severity of disorders rather than reducing them. Most clients do not find meaning in statistically formulated symptoms but in understanding the semantically formulated patterns of their disorders. For example, if you asked someone, “Tell me who you are?” A person would not add up all of his or her negative symptoms and produce a label of how they see themselves. Most likely they would point out those characteristics that describe their unique way of being in this world. This means that it may be important in diagnosis in mental health to significantly separate a person’s mental disorder label from their identity.

The DSM IV is not sophisticated enough to achieve this function. A Client Empowerment Model of Diagnosis presents a client with a diagnostic pattern that specifically changes the discussion away from one’s identity to a pattern of experience that a person is going through. In practice, using a system that statistically categorizes mental disorders based on empirical probability has an explicit advantage for insurance companies, pharmaceutical companies and for the mental health practitioner yet such sophistication may be detrimental to clients, if these mental disorders are not presented in a more sophisticated, holistic and collaborative manner. Perceptually, clients may confuse the mental disorder label with their identity. The question to be asked may be, “Do we have a responsibility as mental health practitioners to diagnose in a manner where diagnosis is beneficial for all involved?”

The Direction of Clinical Diagnosis in Mental Health

Mental health practitioners have a responsibility or at least a professional mandate to include tests instruments within a clinical diagnosis. Some of these instruments are; mental status exams, objective testing, personality testing, motivational interviewing, behavioral, emotional and environmental testing.

However, the most noted test instrument used by mental health practitioners has to be the Diagnostic and Statistical Manual of Mental Disorders or more commonly referred to as the DSM IV (APA, 2000). This book is mostly a standardized classifications system so that all mental health professionals are speaking the same language. This manual breaks down into; Axis I – clinical mental disorders, Axis II – personality disorders, Axis III – medical conditions relating to mental disorders, Axis IV – psychosocial events and environmental concerns and Axis V a global assessment of a client’s ability to function.

Neuroscience may be on the verge of giving the DSM IV an alternative perceptual view of diagnosis with such instruments as; PET scans, MRI’s, and CT.’s and Mindfulness Research (Plante, 2011). However, such neurological research is limited to the laboratory setting without some form of phenomenological thinking. Neuroscience has stirred up a renewed interest in phenomenology or the study of experience (Siegel, 2010). In other words, human experience causes neurological changes, and neurological changes are best understood through studying human experience. Such a notion takes mental health diagnosis in a different direction than the DSM IV that adds up symptoms in order to give a diagnosis based on statistical probability.

From the consideration of a new neurological/phenomenological perspective brings rise to this question, “Are the only accurate mental disorder diagnoses made by adding up symptoms from the DSM IV, in order to render a diagnosis?” At this point, it is only fair to mention that such a question is not completely answerable, yet it does give possible direction to the future of diagnosis in mental health.

However, such a question does reflect the sentiments of those mental health practitioners and neuroscientists that are finding a need for each other’s information. Furthermore, it may raise questions as to the direction of psychological diagnosis from a strictly medical model, statistical probability perspective. Should psychological diagnosis rely only on a statistical probability of symptoms, leading to a diagnosis? Or, should we rely on neuroscience research and combine it with phenomenological experience in developing a more bio/psycho/social/spiritual (Holistic and Person-Centered) model of diagnosis? This may be the moment to consider a different model of diagnosis with the ultimate release of the DSM V, and the book, Person-Centered Diagnosis and Treatment in Mental Health: A Model for Empowering Clients is one attempt at presenting a different model.

Peter D. Ladd
May 2012

American Psychiatric Association. (2000) Diagnostic and statistical manual of mental health disorders (4th ed.). Washington DC: Author (Original work published 1952).

Ladd, P. & Churchill, A. (2012) Person-Centered diagnosis and treatment: A model for empowering clients. London, UK: Jessica Kingsley Publishers.

Plante, T.G. (2011). Contemporary clinical psychology (3rd ed.). Hobaken, NJ: John Wiley & Sons.

Siegel, D.J. (2010) The Mindful therapist: A clinician’s guide to mindsight and neural integration. New York, NY: W. W. Norton and Company.

Copyright © Jessica Kingsley Publishers 2012.