The Making of ‘Dad’s Not All There Any More – A comic about dementia’.

Alex Demetris is an illustrator, cartoonist and maker of comics. He completed an MA in Illustration in 2012, which resulted in a comic based on his family’s experience of coping with his father’s dementia: Dad’s Not All There Any More – A comic about dementia. Here he shares a little about the process of creating the comic and some of his pre-publication sketches (click to enlarge the images).
Alex also co-authored Grandma’s Box of Memories: Helping Grandma to Remember.

The idea for Dad’s Not All There Any More came to me whilst I was studying for an MA in illustration at Camberwell College of Art.  I had been making comics and drawing cartoons as a hobby for a number of years, and decided to enrol on the MA to see how good I could get by focusing on my hobby full time. Continue reading

There is an alternative if you want people to live better with dementia

Shibley Rahman completed his PhD in frontotemporal dementia at Cambridge University, commencing a lifelong interest in the timely diagnosis of dementia. In this article he explores some of the work being done to reduce reliance on medication and increase our understanding and use of non-pharmacological interventions; looking to the future of dementia care.
You can learn about Shibley’s book,
Living Better with Dementia, here

Currently, Alzheimer’s Disease International estimate that there are 47 million people around the world living with dementia. Whilst the policy planks of ‘prevention’ and ‘cure’ continue to attract attention, there is concern amongst many that the people trying to live better with dementia don’t get caught behind.

Gordon-Swaffer-_Living-Better-w_978-1-84905-600-7_colourjpg-printThere’s been a concerted effort to look at the cost of drugs in the NHS in recent times. ‘Innovative drugs’ have been a big deal in the service, and it is reported that new innovative drugs approved by NICE between 1999 and 2004 added £800m a year to the UK drugs bill.

Irrespective of the cost of the drugs budget in England, one is right to query whether patients are being given the appropriate treatment based on the current best practice. A temptation of a medical doctor to prescribe a ‘magic bullet’ can easily explain away the ‘over-medicalisation of illness’, leading the Academy of Royal Colleges justifiably to take action earlier this year.

There are probably over 400,000 older people living in care homes, and possibly dementia ‘affects 80% of care home residents‘. With the scale of statistics, one is bound to be concerned at the potential volume of inappropriate antipsychotics scripts for people living with dementia. Prof Sube Banerjee helpfully reported on this issue in 2009 for the Minister of Care Services at the time.

Every chemical medication has its side effects. I am always impressed with the ease at which the pharmaceutical industry is able to market their drugs, given that there are 1000 billion nerve cells in the human brain all connected with one another directly or indirectly in various ways.

With so many different functions of the human brain, such as memory, attention, perception, language or planning, to name but a few, it has been a difficult task to work out which particular ‘hubs’ involving parts of the brain are particularly involved in certain functions.

The exact characterisation of wellbeing in dementia remains an active area of discussion. For example, five psychological needs had been described by Tom Kitwood – comfort, attachment, inclusion, occupation and identity. Identity itself has been subject to volumes of work, some empirical, but apparently the need for identity ‘involves maintaining a sense of continuity with the past, and some kind of consistency in the present life’ (Kitwood, 1997, p. 20).

In my book Living Better with Dementia: Good Practice and Innovation for the Future, identity is a really big deal. I suggest a possible way in which the human brain might be able to reactivate “sporting memories” from his or her own past. I also describe the powerful effect that music can have on the wellbeing of a person living with dementia.

Also, pervasive to my entire argument is that dementia should be recognised as a disability under the Equality Act (2010) and the United Nations Convention on Rights of People with Disabilities. This takes the argument one towards ‘rights based approaches’, imbuing potentially a ‘rights consciousness’ of what all people are entitled to. When you consider that people receiving a diagnosis of dementia can find the whole experience totally disempowering, as described clearly by Kate Swaffer in her groundbreaking work, the idea that some form of reablement or rehabilitation is incredibly powerful.

The human brain is uniquely baffling. According to Professor Nancy C. Andreasan, “When the psychologist Kay Redfield Jamison looked at 47 famous writers and artists in Great Britain, she found that more than 38 percent had been treated for a mood disorder.”

Some people when they develop a dementia acquire novel artistic talents. How this happens is still a mystery, but it gives a whole new dimension to the term ‘living better with dementia’.

Also, a few months ago, I was asked to introduce by Lucy Frost, a specialist nurse in dementia, a film in a small church in Brighton, England. This film called Alive Inside was a brilliant demonstration of how people living in residential homes would get ‘switched on’ by listening to music from a portable mp3 player, enhancing individual and collective wellbeing. In contrast to medications, a portable mp3 player has remarkably very few side effects, and is relatively inexpensive.

It is claimed that, in Antiquity, Canus, a Rhodian fiddler, used music to “make a melancholy man merry, …a lover more enamoured, a religious man more devout.” One of Alan Partridge’s favourite quips was, “If music be the food of love, then play on.”

Music is a unique phenomenon in being at the interface between emotions, memory and perception in the brain. Cognitive neuroscientists have long recognised that music presents a special conundrum. Only last week, a paper in the prestigious journal Brain was published which sheds light on why music has this unique power even in advanced Alzheimer’s disease. The authors of that particular study hypothesised that parts of the brain, which were relatively unaffected in advanced Alzheimer’s disease, had a special rôle in the appreciation of music (parts of the brain including, perhaps, the anterior cingulate and pre-supplementary motor area).

The relevance of music to residents who live with dementia is all to see in the current series of #Dementiaville, now showing on Channel 4. But in this age of ‘doing things differently’, which is often sadly used as code for cutbacks, there has been a conspicuous reluctance to give non-pharmacological approaches for dementia serious consideration. As England, and other jurisdictions, teeter at glacier pace towards integrated care (and perhaps even whole person care), it is possible a volte face will some day come with the adoption of social prescribing and its offerings.

I feel the way for this alternative view of dementia policy to get momentum is not to have tokenistic involvement of people living better with dementia on a select few number of panels. They must be given prominence in leadership rôles so that they are listened to properly in service design, provision and research. The mantra of ‘there is no alternative’ has had its day.

Reference

Kitwood, T. (1997). The experience of dementia. Aging & Mental Health, 1, 13–22.

Find out more about Shibley’s book, Living Better with Dementia, read reviews or order your copy here.

On Grandma’s Box of Memories – interview with the creators

Jean Demetris was a primary school teacher for 22 years. 8 years ago her husband was diagnosed with Lewy body dementia. She dealt with many aspects of the condition, the highs and lows, and engaged with the many agencies involved in her husband’s care.
The experience inspired Jean and her illustrator son Alex to create a storybook for young children; to help them understand and talk about dementia with their families. We caught up with them both for a quick chat about the inspiration behind the book and what they hope it will achieve. 

Demetris-Demetr_Grandmas-Box-of_978-1-84905-993-0_colourjpg-web

 

Q1. Where did the idea for Grandma’s Box of Memories
come from?

Jean: There were two factors that prompted the idea for the book.

Firstly, when my husband was diagnosed with Lewy Body Dementia I needed information.  I found there were plenty of books on dementia for adults and some for teenagers, but hardly any for young children.

Secondly, in my husband’s nursing home I felt there was a need for more activities and stimulation for the residents.  This made me think about what could be done to encourage residents’ families and friends to participate with the residents and involve them in engaging activities.

Taking these two factors into consideration, I came up with the idea for the book that would become Grandma’s Box of Memories.

 

Q2. How did you Alex (Jean’s son) become involved in making the book?

Alex: A few months after Dad died Mum spoke to me about her idea for the book.  I liked the sound of it, so we started work on the book’s structure and on sketching out illustrations.  Soon we had put together several sample pages and before long we were very pleased to receive a commission for the full version.

I had relatively recently graduated with an MA in Illustration from Camberwell College of the Arts for which my final project had been a comic based on my family’s experiences of Dad’s dementia. Grandma’s Box of Memories represented another opportunity to work on a subject that was close to my heart.

 

Q3. Do you have any suggestions for people on how to adjust to the changes they are likely to encounter when a family member is affected by dementia?

Jean: My experience is of a family member with Lewy Body Dementia.  Different forms of dementia have different characteristics and symptoms, so the adjustments their family and friends may need to make may be different.

Dementia should not be viewed as a stigma.  Find out as much as possible about the condition from professionals and support groups.  They will be able to advise you on available help and support, so use this to your advantage.

You must accept that you have to adjust to dealing with a changed person.  Acknowledge the limitations that dementia can cause in people.  Focus on small activities and do not expect too much of the person.  Everyday tasks such as using the telephone or cooking will become difficult for people with dementia; safety around the home becomes a priority.  Social services should help you to install devices such as gas, water and personal alarms.  You can also be creative in helping the person to remain independent using small measures such as sticky notes reminding them to lock doors, close windows, or turn off taps.

If the person with dementia is alone at home it is also helpful to arrange for friends and neighbours to drop by and check they are safe.

Personal hygiene may become problematic as reluctance to bathe or change clothes can take hold, and you may need to help with these tasks.  Initially this may cause embarrassment but it can be overcome.

Patience and understanding will win out over confrontation in dealing with situations, and a sense of humour is essential.

Should your family member need residential care, try to help make it a home from home.  Enjoy going there and participate in events such as birthday celebrations.  Engage with staff and other residents.  You will encounter people you would not normally meet, which can be rewarding.

Don’t be upset when acquaintances find it difficult to engage with the person with dementia.  Some people will naturally find the situation hard to deal with.

Your lifestyle will change, sometimes quite dramatically.  Caring for a person with dementia can be hard work emotionally and physically, but don’t be hard on yourself.  Seek help – it’s there, and find time for you.  Occasional treats are a must.

 

Q4. What do you hope young readers will gain from this book?Illustration 22

Jean: Grandma’s Box of Memories is meant to be educational and entertaining; I hope readers will enjoy the story, illustrations and characters.

The book provides children with basic but helpful information about dementia, and invites readers to suggest their own ideas for items to go in a memory box.  It might also encourage children to be creative and come up with ideas of their own to support people with dementia.

Hopefully, it will help children understand that they can be part of the caring process and share their feelings and ideas with family members.

 

Q5. What should parents remember when they are explaining dementia to younger children?

Jean: Children will be aware that something is wrong but will normally accept the diagnosis of dementia given the appropriate support.  It is natural for an adult to want to protect the child yet is important to explain what is going on in a calm and clear way.  A child may experience a range of emotions, such as sadness, anxiety, anger and confusion, and will need reassurance that adults are there for them and can offer them time for discussion, both talking and listening and encouragement to ask questions.

It is important that the child understands that dementia cannot be cured but there are ways to help the person feel loved and wanted.

 

Q6. How can children be involved in the care of family members?

Jean: Most obviously, children can pay frequent visits to the person with dementia.  During these visits they can look at books and photos with the person, chat with them, listen to music and sing and dance, draw pictures, or do simple jigsaws.  They can also share small treats such as sweets and biscuits and help to peel and share pieces of fruit.

Outings to places like local parks are another way that children can be involved in caring for someone with dementia.  Sharing simple outdoor activities like playing catch or feeding ducks is fun for everybody.

Please note: if you are in the US or Canada, you can view the book information page and order your copy here.

 

Introduction to the Psychology of Ageing for Non-Specialists – a free extract.

Stuart-Hamilton_Introduction-to_978-1-84905-363-1_colourjpg-printIn this extract from the Introduction to the Psychology of Ageing for Non-Specialists author Professor Ian Stuart-Hamilton explains a little about the idea behind this edition and the audience he wrote it for.

For a free sneak peek, just click the link below to read the preface from the book.

An Introduction to the Psychology of Ageing – preface

You can find out more about the book, read reviews and order your copy here.

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.

 

 

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.

What do you say to someone who is bereaved? JKP author Judy Carole Kauffmann advises

In every Bereavement and Loss workshop that I have facilitated over the years, regardless of the role of the participant, the question of universal interest seems to be  ‘what do we say when we don’t know what to say?’

The Essential Guide to Life After Bereavement cover.

The Essential Guide to Life After Bereavement.

Everyone it seems is afraid of saying the wrong thing, and the more tragic the loss the greater our fear. So why is it so hard for us to know what to say when someone has been bereaved? Is it possible to say the wrong thing?  Does it matter what we say, as long as we convey by our tone of voice and facial expression the fact that we care?

In both my personal and profession experience there are certain phrases and actions that are more helpful than others, but without any shadow of doubt the worst action of all is no action at all.

Because we don’t know what to say, we may go out of our way to avoid the person who has been bereaved by literally or figuratively crossing the road to avoid them. Thus we are in a sense punishing them for something that was out of their control. We are isolating them at a time when they most need support. Sometimes all that sustains the person going through a crisis is the knowledge that other people care. They need to be wrapped in a symbolic blanket of love and support. So, how can we best comfort those in emotional pain?

‘I don’t know what to say’ and ‘I’m so sorry to hear’ are quite helpful expressions and cover most eventualities; ‘I wish I knew what to say’ is another variation on the theme.

‘Is there is anything I can do?’ needs to be backed up with something concrete. For example ‘if there is anything I can do this is my e-mail’ (for a work environment) on a personal level you could say ‘I am not working on Monday, would you like to meet for coffee?’  Alternatively ‘I’m going to the supermarket can I do any shopping for you?’ or ‘would you like me to pick up your kids from school?’ if appropriate.

Practical offers of help are often welcome and much more helpful than an empty ‘if you need anything don’t hesitate to call me’ which often makes the speaker feel virtuous,  but leaves the recipient unfulfilled and unlikely to take up your offer believing, possibly correctly, that it is not meant.

If the bereaved person says ‘I miss him/her so much’ a reasonable response could be ‘what do you miss most about him/her?’ allowing the person the opportunity to talk about their loss rather than trying to change the subject.

Trying to jolly them along with comments such as ‘but you have two lovely children/grandchildren to take your mind off him/her’ is not helpful.  It may make you feel better because you have said something to ‘cheer them up’ but you will not be helping them at all.

The ‘why did this happen to me?’ type of unanswerable questions that  many professional and non professional carers fear,  can be answered with ‘I wish I knew the answer’ or ‘I wish I knew what to say that would help’

The point is that is not essential to have an endless supply of wise words. The person you are with needs to know that you care and that you want to be supportive. It is not necessary to have a brilliant philosophical response.

The importance lies in being there and being able and willing to really listen, giving that person your whole attention.

To truly give someone your full attention without interrupting them is a gift, and if you can listen without giving them your unsolicited advice, your experiences, or what your neighbour did in similar circumstances, it is a rare gift indeed. 

Judy Carole Kauffmann is the co-author of The Essential Guide to Life after Bereavement – Beyond Tomorrow  (Jessica Kingsley July 2013) and End of Life the Essential Guide to Caring (Hammersmith Press 2010). She facilitates workshops on Bereavement and Loss and can be contacted on 07919 072111. I f you’d like to find out more about her work, visit End-of-Life Management.