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. 


Activities for Older People in Care Homes – even when everyone’s under the weather!

Sarah Crockett, author of Activities for Older People in Care Homes, writes about how, with the right attitude, activities co-ordinators can turn any situation (even an outbreak of illness) into an opportunity for positive interaction.

Being an Activity Co-ordinator means different things to different people – and it often means different things depending on what day, or time of day it is. But what is at the core of the role? If you got down to the bare essentials what would it look like?

Activities for Older People in Care Homes Cover

Activities for Older People in Care Homes

In a community of people who are particularly vulnerable, an outbreak (lit. more than 7 people ill at once) means that everyone is barrier nursed, everyone is confined to their room, seeing one or two people in the day, and in the worst case restricted to bread and water as well. But the thing about sickness from an activities point of view is that it reduces everybody’s complex needs to just one. I am bored and miserable, make me feel better! And in this setting, what makes almost everyone feel better is a smiling face, a cup of tea (or hot beverage of choice), and a good chat. Sure, what the chat is about is different for everyone – although most people will start off from much the same topic – I hate being stuck in here on my own. And yes, the theme that develops will be very personal, but its people being people at grass roots level. Being an activity person suddenly ceases to be about complex needs, reams of paperwork, trying to make life better in a big way for everyone, trying to manage a budget (or lack of one), trying to create a press release worthy event every single week, forward planning, all the myriad things that go on day to day. Suddenly it’s about one human being sitting with another human being and just being! It’s the most person centred activity I’ve done in a long time, and the one that’s met the most needs. I have to admit it’s exhausting and exhilarating in about equal measures; the day seems endless with none of the usual structure built in, but the quality of the interactions rockets. There is nothing else to do, no desperate pressing of time, no secret conviction that one’s time could be better spent in doing this differently. There is just the person in front of you – oh, and the cup of tea. It can be daunting – going in to visit someone that you don’t usually sit and chat to, wondering if there will be enough to say, wondering if you are the right person to be doing this. But ultimately you are the right person, because you are the person that is there.

I’d like to introduce you to Edward. He’s been with us four and a bit months. I’ve been in and chatted to him a little, and enjoyed it, I’ve done an assessment of his needs – he’s nursed in bed palliatively, he loves classical music, and his personal radio needs to be in the bed with him, he is a practising Christian who will take communion whenever offered, and he doesn’t want a glass of beer – he’d rather have apple juice or tea. But with 61 other people, that’s about as far as I’ve got so far. Earlier this week I was part of a conversation that talked about him giving up, being very depressed, being very weak, saying that actually his death is very near. He spent most of this week asleep, or violently angry at the world. Wednesday morning after I cancel all the activities planned for the day I walk past his room. A carer coming out says that he is calm this morning, and awake. So I go in. He’s just got a cup of tea, so I sit and help him drink it, and listen to him talk – mostly he just needs an audience. I don’t necessarily agree with some of his opinions, but I’m here to boost him, not me, so I make the right noises in the right places, and gradually the conversation starts to shift. Half an hour later I offer him another cup of tea, which he accepts. And half an hour after that, another one. By now we’ve talked about his career as an engineer and draftsman, my garden and first potato harvest of the year, the fact that whoever stuck the roof on the building opposite didn’t have the first idea of coherent design, he just wanted to tart the place up to sell, and money as the root of all evil. Oh and steak – the joy of a good steak dinner, possibly involving potato salad. Edward has also asked me to pass him the model buses from the desk where they are half hidden in the 90th birthday cards. He’s shown them to me with the pride of a creator. He made them himself in his shed. He would go and look at the real things, make notes, then create them from the blue prints in his head. We discuss the idea that it’s the same with me and making clothes – seeing how a thing ought to go, and making it so. He shows me the tricks, where they come apart, his favourite views. He tells me how he made them. He also tells me that his sister used to design clothes, but couldn’t draw – she’d describe them to him, and he would draw them. He tells me that his hobby was always woodwork, it lit him up.

At the end of an hour and a half he decides he shouldn’t hold me up, and dismisses me to ‘go and get on with some jobs’. I assume he’s tired, so do as I’m bid. If Edward is tired, it’s with the status quo. When the carer comes to help him with his lunch – he is too weak to manage to feed himself, or to chew very much – he tells her in no uncertain terms that she’s not to mush it all up like that, and she’s to sit over there in that chair whilst he gets on with his lunch thank you very much. By the end of lunch time everyone is talking about how Edward ate his own lunch, and the carer who was made to sit in the corner is wearing it like a badge of honour. That afternoon Edward demands paper and pencil, and sits drawing the view from his bedroom window. The following morning he demands bacon and eggs for breakfast. When I arrive he not only remembers me, he wants to know what took me so long, and is thrilled that I’ve made him some potato salad fresh from the garden! Two days later Edward (who suffers from acute postural hypotension) is sitting on the side of his bed, trying to get up.

I’m not saying this is all down to me, to the feeling of being actively listened to, there are other contributory factors – for example he has come off his medication this week as well. But I do know that this was an hour and a half of my time very, very well spent.

Activities for Older People In Care Homes is now available from Jessica Kingsley Publishers.

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.



Books for Professionals Working with Older People.

If you work with older people or have an interest in elder care and dementia care, we’ve put together this booklet of new and bestselling titles which might be of interest to you. Feel free to browse, share and email the booklet to anyone you think might be interested. Double click on the booklet to view full-screen.



Please also note: although the prices shown here are in UK £, most books are available internationally. If you’d like any further information on any of the books in the leaflet, simply click on the title you’re interested in and it will take you straight to the book information page.

If you’d like to download and print a copy of the leaflet, simply click here.

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.

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:


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: