Interaction, activity, distress and dementia

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From birth to death, communication and social interaction is a fundamental human need.  Our mental and physical well-being depends on it; without it we become distressed. Eventually we may become passive and cease to try to express our needs and feelings.

On the bus the other day I watched two women come on board with a nine or ten month baby in a pushchair. They arranged the chair facing them and made the baby comfortable, giving him a bottle of juice. So far, so good, but then for the rest of the journey they both sat completely engrossed in their mobile phones, ignoring all the baby’s attempts to communicate. He did wave and gurgle at them for a while, then made some more protesting noises, finally turning away with a resigned sigh, his whole face and body looking slumped and dejected. I got the impression he was used to being ignored, and felt very sad.

There is good evidence of the distress a baby feels when a parent fails to interact. See “the still face experiment.” https://www.youtube.com/watch?v=apzXGEbZht0

I was thinking about this during a visit this week to a specialist dementia ward.  At Healthcare Improvement Scotland, members of the Focus on Dementia team are supporting improvement work in specialist dementia units. We were invited to go and see what the ward was doing to transform the experience of patients, all of whom have advanced dementia.

Two years ago, the ward had a reputation as a “difficult place to work” There was a high staff sickness rate and high staff turnover. Many of the patients were on one to one observation because of their distressed behaviour, often referred to then as “challenging, aggressive or violent”, and frequent use of antipsychotic medication was taken for granted as a routine part of care.

Now things ARE different. One to one observations are hardly ever needed and the use of anti-psychotic medication is a fraction of what it was. Staff morale is much higher and the staff sickness rate has dropped dramatically. Datix reports, which used to be a major feature of life on the ward, are now comparatively rare, since incidents of harm resulting from distressed behaviour are much fewer.

Why?

Because staff interact with the patients and do activities with them. Patients are no longer sidelined as incapable of participating because of their dementia. There are regular trips out, as well as plenty of access to the garden, and a range of indoor activities.  Staff also keep records of when patients get upset, so they can identify patterns and causes.

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One of the rooms has been set up as a cafe. During our visit, most of the patients were there, contentedly sitting with their mugs of tea, some of them outside in the sunshine on the patio.

Communication takes many forms. I see the cafe as an environment which feels familiar and safe, and communicates acceptance of the people with dementia as individuals who can take part in normal life. It goes a long was to mitigate the effect of the institutional setting which tends to be the opposite; alien and frightening, taking away the person’s agency and sense of self. Of course, staff were engaging with the patients too.

A person with dementia who cannot take part in accustomed activities unaided, or cannot communicate verbally, is not a baby. They are a fully grown adult with a wealth of history and life experience. But in one way they are very similar: failure to involve them in interaction and activity can cause them great distress.

Rebecca Kellett, August 2018

AHP Clinical Lead, Focus on Dementia, Healthcare Improvement Scotland
Speech and Language Therapy Clinical Lead for dementia, NHS Lothian.

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AHPs (Allied Health Professionals) work in partnership with families, carers and communities to support people with dementia to engage in purposeful activity and participate in conversations and other forms of communication.

For the Alzheimer Scotland/Scottish Government policy document on AHPs’ contribution to supporting people living with dementia, see Connecting People, Connecting Support
https://www.alzscot.org/assets/0002/9408/AHP_Report_2017_Web.pdf

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I love dancing!

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Everyone who knows me knows that I will do it whenever, and wherever I can.  It makes me happy, it keeps me fit, it is my social life, and it is even how I met my husband – he asked me to dance at Rutherglen Town Hall and we later fell in love.

Now that may sound like a story told to you from someone who used to go “up the dancin” in the 1950s… but actually that’s my story – and I’m 36 years old.

But in this story, I recognise the stories of so many others – people who met and fell in love at the dancing, people who go dancing for fun on days and nights out, people who go to dance classes to exercise, people who dance with their friends and families at weddings and parties, people who did Scottish country dancing at school, people who learned to waltz for their first dances…..the list of memories attached to dancing is a long one.

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  • What are your memories of going dancing?
  • Do you remember a special event you danced at and who you were with?

And that is why dance is such a good physical activity for people with dementia. It is recognisable, fun and memorable – and you can enjoy it anywhere, at any level of function.

I run monthly “Keep calm and keep dancing” tea dances for adults with dementia in our acute mental health admissions ward. Patients admitted here have complex mental health needs with moderate to advanced dementia, and their physical abilities differ widely. Promoting physical activity in this area can be a challenge, and as a Physiotherapist this is my main goal, but it is not my only reason for incorporating dance into the service. These sessions can improve self confidence and promote social inclusion, social interaction and communication, reduce distress and recall good memories through discussion of related topics e.g. local dancehalls, clothes, relationships, favourite dances/music.  We encourage families to come to sessions as well, so people can spend time together engaging in physical activity and making memories.

Physiotherapy staff lead people through dance-based exercises based on traditional dances including the waltz, cha cha and jive, which promote whole body movement.   We maintain a relaxed friendly approach at all times, ensuring each person is welcomed to the group, and 1:1 time is spent with them during the session.  Those who may be reluctant to participate in the exercises are encouraged to sing along with the music and participate in the reminiscence conversations, which can lead to them becoming more active as the sessions progress.

A lot of thought goes into the content of these dances – they include exercises to promote strength and flexibility, improve balance and co-ordination and provide prolonged focus on tasks.  But on the surface they appear very relaxed and fun to take part in.  I know I have been successful when the effort and planning is not noticed by anyone involved – they just enjoy the events.

Some of our biggest successes have been the adapted Scottish dance routines and circle dances – and recognisable dances from across the eras always go down a treat!

These dance crazes provide an opportunity for people to do moves they “just know” without having to think about them. The music provides a memory trigger, and we do the moves together – it’s a lot of fun!

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  • What dances always get you up on the dance floor at parties?
  • Why not try doing one of them now – maybe the hand jive, the twist or the slosh?

The evidence base for dance in dementia is growing! Projects including the Brighton Dance and Dementia project 2012 and Jabadeo Circle Dance, and other recent studies have shown the benefits of dance, and the University of Edinburgh are currently working with choreographer Chris J Stuart-Wilson to collect data on his “seated swing” sessions.

In my own area, we have collated data from attendees at the dances, and the comments have been overwhelmingly positive, and included, “I didn’t think I could do that”,  “its lovely to see everyone enjoying themselves”, “Everyone looks so happy”, [the dance leader]”has so much energy and enthusiasm”, “They partied on all night after the last tea dance”, “Its nice to see [patient]so settled”.

In Dementia care, we often live for the moment, and the tea dances have provided us with plenty of these, including:

  • A lady who rarely spoke, sang and clicked her fingers in time with the music,
  • A man was able to recall Glasgow jive steps and lead the physiotherapist through these in time with the music, telling stories of previous classes he had gone to.
  • A man who could not walk, waltzed me confidently round the floor.

People dance to smile, have fun, remember good times and keep active.  So why don’t you give it a go as well? Turn on the music and dance like no-one is watching!

I hope to see you on a dancefloor sometime soon!

Claire Craig – Specialist Mental Health Physiotherapist

Inverclyde Health and Social Care Partnership

Twitter: @clairecraig_PT

Use of twitter to connect to people living with dementia and their families

#WAM2018

@AHPDementia

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In January 2018, Six Occupational Therapists took on the challenge to use twitter to increase knowledge and awareness and share our experience as Occupational Therapists working with people with dementia and their families/carers. We were supporting and sharing the key messages and themes from Alzheimer’s Scotland publication – Connecting People, Connecting Support by providing very practical hints, tips and ideas from our experience as working as Occupational Therapists with people living with dementia and their family/carer.

A new twitter account was set up so all the therapists involved were tweeting from this account rather than their own professional or personal accounts.   We each tweeted on a particular day of the week and we each had a key element of the AHP approach that we were responsible for tweeting about.

Alongside our tweets, we all had an image that we tweeted each week so the tweet was reinforced by the image.   In a feedback session, it was interesting to note that although we all chose an image early in the project, the images related in some way to our own personalities and interests which we found amusing.

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Over the initial 5 months there have been challenges for us to overcome including:

  • Confidence in using a new method and style of communication including concise messages under 240 characters, whilst using @ and # symbols.
  • Lack of suitable links that we could share to provide further information on the topic and messages we were tweeting about.
  • Fear that it wouldn’t work, that you weren’t sharing relevant information or letting the group down
  • Fear of ‘trolls’ and negative responses, although we have had great feedback from our followers which has increased our confidence. Further to this, understanding that people’s experiences of dementia and the support that they have received, is all different.
  • The distance, the Occupational Therapists were based across Scotland
  • Initially getting support from our boards and ensuring that we adhered to strict social media governance

The project has been supported and achieved by:

  • The clear vision and project plan from the outset
  • Being equal partners and contributors to the project from the outset
  • Teamwork, a supportive group that has been willing to learn from each other, and give practical advice
  • Tweeters engaging with the discussion, increasing the value and depth of the tweets
  • Statistical analysis which has enabled us to understand what followers have liked and engaged with, which has directed our future tweets
  • Keeping focused by using the themes from the AHP approach in Connecting People, Connecting Support which enabled planning and structure
  • Keeping it real, using experience as practicing Occupational Therapist. Sharing authentic knowledge and understanding of the situations that people living with dementia and their families face
  • Having weekly virtual huddles via telephone to offer advice and support to each other
  • Starting small and adding elements as the project progressed. Started with one tweet, and then added more. We also built up who we tagged in the tweets with confidence
  • Implementing policy into practice
  • We have had requests from others to come and share what we have done

It has been a great learning and CPD experience, so much so that we have all agreed to keep tweeting……….

What’s next for @AHPDementia?

  • Get other AHP’s involved in @AHPDementia to share their knowledge and experience starting with physiotherapy, podiatry and speech and language therapy
  • Encourage more Occupational Therapists to join Twitter as a method to support people living with different diagnoses
  • Review and learn from the data we gathered, daily, weekly and monthly
  • Develop governance regarding expanding the project to other AHPs
  • Keep tweeting

It has been a fantastic project to be part of and we feel we are really making a difference. It has also been a great professional development opportunity as we have all learnt so much personally and professionally from being involved in the twitter account.

Please join us at @AHPDementia and tell us what you think?

Contributors: Lynn Dorman, Julie Brown and Carrie Milligan

Communication – what makes it work?

# WAM2018

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I sent an email to colleagues recently that read ‘The seminar room is booked for our meeting in October’.  Now, did I mean that I’d made the booking or that someone else had booked it before me and the room was no longer available?  On re-reading, I realised the potential for communication breakdown and repaired the email to ‘I’ve booked the seminar room for our meeting in October’.  A simple change.

As speech and language therapists we deal with the minutiae of communication breakdowns every single day.   Sometimes we repair and sometimes we follow until we find a chink of understanding to latch onto and develop.  Sometimes we fail.  That’s the trouble with communication – it can be a complicated business.

So, what makes communication work?  Teepa Snow, an American dementia expert says ‘It’s the relationship that is MOST critical not the outcome of any one encounter’.  If the relationship is most important, our priority is getting to know the person we’re communicating with.  In a work setting, this might mean gathering life history information with family help.  We often discuss likes and dislikes around a specific topic using simple choices –

‘Do you prefer Coronation St or Eastenders?’                                    ‘Sweet or savoury’

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It’s difficult when someone can no longer find the words to say exactly what they mean.  It becomes the communication partner’s job to look for the meaning behind the lost words.

  • What is the person’s tone of voice telling us? Do they sound angry or frightened or excited?
  • Are they looking at or pointing to something that might help to understand meaning? A calendar or a photograph or a letter?
  • Are there words that sound a bit like the target? Maybe a changed first letter or even a word in the same category – e.g. bed for blanket.  I worked with a man who served in the Navy but used Army every time we talked about his past.
  • If we know the topic, it can help us to offer appropriate choices. It can help to write words where choices can be underlined or circled.  By whittling down the choices, we can reach a shared understanding.  Pictures or images can also be helpful here.

What did you do at the weekend?

Football              Cricket         Something else

On TV               At Dens Park      Somewhere else

Win                Lose                   Draw

I’m sure we’ve all had the experience of talking and not being heard.  Perhaps the person we’re talking to is looking away or is distracted by something else or is even texting on their phone!  How do you feel when this happens?  It feels better when we have someone’s undivided attention, doesn’t it?  When the person is looking at you, actively listening and giving their full attention the conversation is more likely to work.  At least it’s off to a good start.  Listening is easy in a quiet environment with no distractions.  You might take a moment to consider your environment before embarking on a conversation.  It’s easy to turn off a blaring TV or move closer to someone to ensure good eye contact and listening.  Little changes add up to successful connections.

When my daughter comes home and excitedly offers masses of information in a constant flow, it’s easy to lose key points.   That’s the reason I might miss the dress-down day at school or sign the wrong lunch form.   Sometimes there’s so much to process that I need to hear it again.  I tell her to take her time and give me one chunk of information at a time.  I might write it on the calendar.  Following her lead directs me to make sure she has the right things at the right time.  We can both feel satisfied by implementing strategies to:

  • Slow down
  • One point at a time
  • Make a note
  • Ask for repetition to clarify
  • Follow the person’s lead without interrupting

With the best will in the world, sometimes conversations break down.  That’s life living with or without a dementia diagnosis.  We might need a refresh and come back to the opportunity later.  As Lisa Genova, the author of Still Alice and eminent neuroscientist says in her TED talk:

‘There are three lessons I’ve learned from my grandmother and the dozens of people I’ve come to know living with this disease. Diagnosis doesn’t mean you’re dying tomorrow. Keep living. You won’t lose your emotional memory. You’ll still be able to understand love and joy. You might not remember what I said five minutes ago, but you’ll remember how I made you feel. And you are more than what you can remember.’

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References:

https://www.slideshare.net/HISCSonoma/teepa-snow-dementia-expert-on-understanding-alzheimers-patient-behaviors?qid=94a41289-6906-4f9f-9fb0-b1e6995974be&v=&b=&from_search=1

https://www.ted.com/…/lisa_genova_what_you_can_do_to_prevent_

Contributor

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Jenny Keir Speech & Language Therapist NHS Tayside

How CAN a physiotherapist help you to live with dementia?

#WAM2018

Alzheimer Scotland has been working with our partners at the Chartered Society of Physiotherapy and were proud to launch our new post card during dementia awareness week in Scotland in June 2018.

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The Chartered Society of Physiotherapy is also launched its exciting new campaign “Love activity, Hate exercise?” which promotes doing more of what you love with physiotherapy, and aims to increase everyone’s physical activity while having fun! The campaign launched to the public in July 2018 so look out for events going on near you promoting this!

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I love dancing and going for walks but I hate going to the gym– what do you enjoy doing?

We will share the work of #AHPConnectingPeople #withphysioyoucan and #loveactivity over the coming months on twitter – keep an eye out for updates and good practice stories.

Physiotherapists will work with you to improve health and wellbeing, and to maintain independence in people with dementia, through physical interventions and activities

Physiotherapists CAN:

  • Enable you to be physically active and continue to do the things you enjoy. Being active supports good physical and mental health.
  • Work with you, your family and your friends to maintain your independence. Encourage you to continue to do things for yourself.
  • Help you stay mobile for longer and reduce your risk of falling. This can include moving and safe handling advice for family, friends and carers.
  • Inspire you to live well with dementia – Help you to recover from illness and injury

Your GP or consultant can arrange for a referral to a physiotherapist who may see you in your local hospital or at home depending on your needs.  In some areas you may be able to self refer to a physiotherapist too.

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Contributor

Claire Craig  – Specialist Physiotherapist – Inverclyde