Stressed? Sad? Angry or Frustrated????? What would you put in Room 101?

Pet hates… we all have them. The BBC have a long running comedy show where celebrities get to nominate items to put in Room 101, to be banished from earth forever. Past suggestions have included maths teachers, DIY, soap stars singing and cheese balls! In 2014 Nurofen Express surveyed 2000 people in the UK and asked them “What’s the most annoying thing about modern life?” Slow wifi, PPI calls, people taking up 2 parking spaces, pot holes and dog dirt left on the pavement were amongst the most common answers given.

We all have things that annoy and irritate us, some are understandable, others completely irrational. Mostly we bite our lip or let off steam by writing to complain, tweeting, moaning to a friend… but what if we were unable? What if our speech had deserted us? What if the area of our brain that helps us control our behaviour and impulses, our frontal lobe, was no longer functioning as well as it should? What if, in addition to not being able to verbally express or control our frustration, we were already living in a state of anxiety? What would it take to tip us over the edge, to cause us to swear, bang a door, push someone away or retreat inside ourselves?

Many people living with dementia talk about having periods where they feel unsure and anxious and are more emotional, and there are sound social and biological reasons why this can be so. The traditional approach to managing frustration, anger or depression for people living with dementia, particularly when their dementia has progressed to the point where they find it hard to understand the world around them, has been to offer medication. Whilst this has a place it is now recognised that non-pharmacological or alternative approaches may be more suitable.

The IDEAS Team (Interventions for Dementia: Education, Assessment & Support) are based in NHS Dumfries and Galloway and provide education and consultation on using these approaches to people working with people living with dementia. The team is multidisciplinary and so we have a specialist nurse, a psychologist, a social worker, an occupational therapist and a speech and language therapist. Our first advice when being asked for help in supporting someone who is showing repeated signs of anger, frustration or depression is to recommend our CEASE model.

New CEASE Poster June 2018

The CEASE model helps us to understand why a person might be behaving this way, particularly if they are unable to tell us themselves. Some of the questions it asks are common sense – are they too hot or cold, stiff from sitting, bored, lonely? Experience tells us that the simplest things can be the most annoying and are often overlooked. One of the most common reasons why people with dementia express anger and frustration is undiagnosed or untreated pain and so Comfort is always our first thought. The exhausting effect of even mild pain where endured long term is significant, we lose interest in food, find it hard to sleep, retreat from activities we enjoy and can easily enter into a downward spiral. Evidence shows us that still all too often people living with dementia do not get the pain relief they need.

“Pain is such an uncomfortable feeling that even a tiny amount of it is enough to ruin every enjoyment.”              Will Rogers, American Actor

The Environment and lack of Activity can also be big stress causing factors. Our Occupational Therapist is able to advise on environmental improvements, suggesting helpful resources to make surroundings easier to negotiate or more pleasant to be in. An OT is also able to suggest ways to tailor activities so that they are appropriate to the person’s ability. Lack of opportunities for Social Contact or to Engage with Communication can also cause distress. As a Speech & Language Therapist I look at what skills the person has, what they can understand, say, how they use body or facial expression, if they can read or write or use other forms of communication and provide family and carers with strategies and advice on how to improve their own communication to aid the person. If we can’t say it, can we draw it or show it?

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Father & Daughter: “To love and be loved, That’s what life is all about”

Frank Sinatra

The CEASE model enables us to put ourselves in the shoes of the person with dementia, to understand from their perspective so that rather than judging or reacting to the behaviour, we can understand why this behaviour is happening and then take steps to remove the cause of it…. to put it into Room 101. Which, to be honest, is what we all would want.

Helen Moores-Poole is an Advanced Speech & Language Therapist working in NHS Dumfries & Galloway. As a member of the IDEAS Team, she promotes the use of Speech & Language therapy as a way to help reduce stress and distress and improve psychological wellbeing in people with dementia, their families and carers. The IDEAS team have a Facebook page @IDEAS Team NHS where they publish links, suggestions and advice. Helen tweets and retweets at @poole_moores.

The CEASE model was written up in the September 2017 edition of the Journal of Dementia Care for those who may be interested in using the model in their work.

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Summer 2018 Alzheimer Scotland Intern: Development of an Occupational Therapy Focussed Social Media Strategy

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Summer Strategy #OTIntern2018 #RoleOfOT

Sharing with the world what we do as occupational therapists is not necessarily our professional strength. As MSc Occupational Therapy students, we believe it is important to show the diversity and potential the role can have, as well as applicability within specific populations. This summer, we decided to focus on increasing that awareness and education of occupational therapy within dementia care. Our platform? Instagram! Our message? First, the role of the occupational therapy intern with #OTIntern2018 and second, the role of occupational therapy within dementia care with #RoleOfOT.

Now, where to start!? At the beginning of the internship we sat down with Beccy Jardine, the Campaigns and Social Media Manager within the @alzscot Communications Team and began to develop a structured outline for our summer strategy. We will admit we were naïve at first thinking we could simply post as freely as we do on our own pages! Little did we know that a true social media strategy takes into consideration aspects such as tone and target audience. With this helpful information, we determined a conversational tone would be the most approachable on Instagram, using language that anyone could understand by not being too profession specific, and incorporating the fun side of social media using emojis and filters. We also decided to go for a new target audience this year, focussing much of our content towards allied health profession (AHP) students and young people on Instagram who are curious about the role of occupational therapy within dementia care. Coming into this internship, we were both frequently asked by our classmates what our role would entail this summer – and this is a perfect way to share that!

Why Instagram?

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We wanted this summer to be different from past internships while also allowing the Instagram project to continue to grow year by year. Keeping with using Instagram with the occupational therapy internship program allows us to connect and engage with our existing followers, provides us with qualitative and quantitative feedback opportunities to take forward into potential conference posters, and allows for overall low maintenance longevity. However, with our new tone and target audience we hope to not only reach existing users, but also build off the strong influence @AHPDementia has on twitter by bringing some Occupational Therapists over to the dark side (across to Instagram of course!). By sharing our Instagram posts also on Twitter, we hope to connect our two existing audiences that we are engaging with.

One of the fun parts of this summer for us will be creating our own content. By doing this, we can integrate our own creativity into the project and have a unique, user friendly Instagram feed. Through taking and creating our own pictures, we will hopefully have a visually appealing page that will draw individuals in to the content we post.

What’s already out there? Well… when exploring the world of occupational therapy on Instagram it was shocking the lack of hashtags used, accounts tailored to occupational therapy and how hard it was to find occupational therapists with accounts. By creating two unique hashtags for our campaign, as well as tagging any existing occupational therapy hashtags we could find, we hope to build on the small amount of occupational therapy presence on Instagram.

Again, we plan on sharing the Instagram takeover with multiple AHP programmes across Scotland in hopes of bringing attention to not only our campaign, but that of AHP’s on Instagram as a whole. Many students have both professional and personal twitter accounts, and this strategy may begin to encourage students to have professional Instagram accounts as well!

Measuring Engagement

We will be collecting both quantitative and qualitative feedback from the Instagram takeover, including statistics on followers, views and likes. This information can display the level of engagement but also the number of individuals that the data is getting to. Qualitative data will be collected from any comments on the photos, as well as any direct messages. In the projects first week, we gained over 50 new followers and had over 230 views of our first post. We will continue to monitor the engagement with our account and hope to reach as many individuals as possible. Using Instagram as a research tool and educational resource all while allowing us to be creative will allow for a lot of fun this August!

Goals

We have set big goals for our program including doubling the number of followers from the start of the takeover until the end and receiving an average of 30 likes on each post. Although our internship consists of a fixed program for 5 weeks, we hope to also open the social media platform to a sustainable interaction. With new connections being made through followers and engagement, we plan to leave a program that can be carried on throughout the year with AHP dementia information.

We hope to have some fun over these 5 weeks with a chance to display our own creativity, challenge ourselves and build on our own learning. This summer project will bring us one step closer to a community that grasps the importance of occupational therapy within dementia care and increase opportunities for internship roles within allied health professions. As occupational therapists one of our sole missions is to advocate for others – so why not also advocate for ourselves?

See you over on Instagram! @ahpdementia

Contributors

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Ciara & Sarah

My name is Ciara Felle, I am originally from Ireland but am currently completing my master’s degree in Occupational Therapy (Pre-Reg) at Queen Margaret University. My undergraduate degree is a BA (Honours) in Psychology and Sociology from the University College Cork, Ireland @CiaraFelle_OT

Sarah MacFarlane and I have also just finished my first year of the MSc Occupational Therapy (Pre-Reg) program at Queen Margaret University. Coming into this degree, I have completed my BA (Honours) in Kinesiology & Physical Education and Master of Kinesiology from Wilfrid Laurier University, Canada  @SMacFarlane_OT

#Physiotherapy & #Dementia

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My name is Rory Higgins and I am delighted to write this week’s blog. I am a 2nd year MSc Physiotherapy (Pre-Registration) student at Glasgow Caledonian University. Previously, I completed BSc Mental Health Nursing and MSc Global Mental Health. I decided to pursue physiotherapy as I am interested in the interaction between mental and physical health, particularly regarding dementia.

Many people living with dementia experience pain and fatigue in addition to impaired movement, coordination, balance and strength, which increases the likelihood of falling. This represents a large population who could potentially benefit from physiotherapeutic interventions. In order to address the impact of dementia on overall health and quality of life, I aim to enhance my knowledge within an evolving physiotherapy context.

This has led to me currently undertaking my elective placement with Alzheimer Scotland. This placement is considered role-emerging, as I am the first student physiotherapist to have been assigned to my placement site. As my practice educator is an occupational therapist, I am in the fortunate position to also gain a deeper insight into interdisciplinary working in a way that enhances function and participation. As a future physiotherapist, it is imperative that I hold the professional capacity to effectively assess, understand and treat the implications of all dementia types and comorbidities.

I believe that it is important for student physiotherapists to seek out non-traditional placements such as Alzheimer Scotland, in order to expand their scope of holistic practice and develop interpersonal skills. Ultimately, I am hopeful that this experience will enable me to gain new expertise, conduct psychologically informed practice and promote the diverse values of physiotherapy for people with dementia, whilst enhancing service delivery. My primary aim will be to ensure that the interventions I facilitate are enjoyable, as this will encourage participation. Specifically, some of the ideas I have in mind include:

  • Health promotion and educational interventions, such as the benefits of physical activity and how AHPs can assist people with dementia.
  • Physical activity classes, whether group-based or individual, such as seated exercise and falls prevention programmes.
  • Offer relaxation therapies including hand massage, breathing exercises and the facilitation of peer-support groups.
  • Provide culturally competent care and maintain sense of self for individuals by having discussions regarding specific equality and diversity needs, and tailoring interventions in order to be appropriate and meaningful.
  • Use social media to demonstrate the benefits of physiotherapy for people with dementia and allow students to understand the value of this placement.
  • Work alongside members of the Alzheimer Scotland teams to widen insight into other roles and organisational operation e.g. service managers, occupational therapy interns and dementia advisors.
  • Help out at dementia cafés across the local area to engage with communities and promote equitable access to dementia care.

Please feel free to follow my 4-week journey on Twitter @roryhiggin5 to see if I have been able to apply my initial ideas to practice.

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Contributor

Rory Higgins

Physiotherapy Student, Glasgow Caledonian University

@roryhiggin5

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From Occupational Therapy Intern to Occupational Therapist Rights Based Practice & Continence

I have completed two Occupational Therapy Internships with Alzheimer Scotland, Queen Margaret University and Santander Universities; the first was a 12 week full time internship in the summer of 2015 and the second a part time, 10 week internship in 2017. Both of these internships were wonderful experiences during which I learned a huge amount and was given opportunities to meet and work with some truly amazing people.

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Projects that I was involved in included: the development of a “Top Tips” leaflet in co- production with the Scottish Dementia Working Group (SDWG); completing and collating a literature search on “Rights Based Practice” as part of the development of an MSc Module being run at Queen Margaret University, Edinburgh; a literature review on the value of therapeutic interventions for people with dementia and a photography project with some members of the SDWG. The internships also offered me the opportunity to share some of my work at the annual Royal College of Occupational Therapists conference in Harrogate in 2016, as well as via blogs and a magazine article.

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I am now an occupational therapist working on acute medical wards within a hospital. Although I do not work in a dementia-specific setting, I regularly work with people with dementia, as Susan Holland (Alzheimer Scotland Nurse Consultant) explained in a recent post on this blog: Alzheimer Research UK (2018) estimate that 25% of patients occupying acute hospital beds are people with dementia. I often refer back to what I learned during my internships as well as the countless resources available through Alzheimer Scotland. I genuinely believe that completing the internships have made me a better occupational therapist.

My blog today is sharing with you two learning opportunities as an occupational therapist that I have taken with me to my role as an occupational therapist in the NHS – rights based practice and continence.

Rights-Based Practice

A large focus of my first internship was on rights-based practice. A human rights-based approach is actively being encouraged for Allied Health Professionals by Alzheimer Scotland to ensure that all legislation, policy and strategies affecting people with dementia are underpinned by human rights. A human rights-based approach is about making people aware of their rights, whilst increasing the accountability of individuals and institutions who are responsible for respecting, protecting and fulfilling rights (Alzheimer Scotland, 2015).

I regularly find myself reflecting back on what I learned during my internships, particularly when faced with challenging situations. As I touched on earlier, I had the absolute pleasure of working with the SDWG who are a positive, pro-active voice for people with dementia in Scotland. Working on acute wards I have had much more contact with people with dementia at “crisis point” – often their home situations have broken down and the person with dementia and their families are simply no longer able to manage for one reason or another.

When a person with dementia is referred to me it is essential that I keep the importance of person centred and rights-based practice at the heart of my work with them. During both of my internships I used Tom Kitwood’s book “Dementia Reconsidered: The Person Comes First” and I invested in my own copy. I regularly refer to his work as a reminder of the importance of maintaining a person centred approach, regardless of how a person with dementia presents. NHS bed shortages are real, and it is easy to become caught up in the pressure of facilitating quick discharges from the wards – as Kitwood (1997) explains, it is important to take the time to listen and understand what a person with dementia is saying, as well as to build a rapport and common understanding. One of my favourite quotes from Kitwood is; “Rather than emphasize the differences that dementia brings, we will first celebrate common ground” (Kitwood 1997, P.8) I feel that this eloquently reinforces the importance of seeing the person before the dementia.

On the wards that I work on, every new patient is issued with a copy of the “Getting to know Me” document to complete themselves and/or with their family. These documents provide an excellent reference to guide a person-centred approach to planning and intervention and are particularly useful when working with people with dementia who have communication difficulties.

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During my second internship, I was invited to attend a Dementia Action Group meeting for people with dementia and their family carers. My attendance at this meeting enabled me to gain an insight into some of the difficulties faced by family carers of people with dementia, as well as the important role they play in the lives of a person with dementia in enabling them to live well in their own home environment. I keep this in mind when I am working with people with dementia and ensure I constantly liaise (with consent from the person) with their families to ensure that they are happy with and involved in discharge planning.

Continence

As an occupational therapy intern, I was introduced to a number of resources developed and created by the SDWG. One of these resources was a short film on continence by the wonderful Archie Noone (a link to this can be found at the end of this blog post). At the time I thought it was a brilliant piece of work however was probably unaware of just how relevant it was until I began working in an acute setting. Archie emphasizes in his film that continence should not be a taboo topic and must be spoken about openly and honestly.

I have come across many people in my job who present with ‘new incontinence’ or ‘worsening incontinence’. It is easy to jump to conclusions and assume that a person is simply no longer continent so no longer managing and will require a large package of care at home or a long-term residential placement. This is not however always the case, there are many options available for people to manage incontinence and, as Archie reiterates in his film, it is important to speak openly to the person and their families, ask questions and work with them and the multi-disciplinary team to trial different options and find out what works best.

Continence is much more than just toileting; it affects a person’s skin integrity that can, in worst-case scenarios, result in a life or death situation. Continence is also about dignity, quality of life and empowering a person to remain independent for as long as possible. It is such an important conversation to have and I am ever grateful to Archie for preparing me for it. There is a useful document from the Care Inspectorate (2015) on continence which  includes links to available advice and support:

http://www.careinspectorate.com/index.php/guidance/9-professional/2613-promoting- continence-for-people-living-with-dementia-and-long-term-conditions

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In summary

The points I have discussed are two main areas of learning which I took forward from my time as an occupational therapy intern, however this is a mere drop in the ocean for the vast amount I learned from everyone I came across during my internships. Both internships were (without wanting to sound too over the top) life changing for me and set me up brilliantly for a career as an occupational therapist.

Contributor

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Lynsey Robertson-Flannigan Occupational Therapist

References

Alzheimer Research UK (2018). Dementia Statistics Hub [Online]. [viewed 08 July 2018]. Available From: https://www.dementiastatistics.org/statistics/hospitals/

Alzheimer Scotland, 2015. Rights based approach to dementia [online]. [viewed 10 July 2018]. Available from: http://www.alzscot.org/campaigning/rights_based_approach

Care Inspectorate, 2015. The Name’s Noone, Archie Noone [online]. [viewed 10 July 2018]. Available from: https://www.youtube.com/watch?v=bToOiCWKrcE

Care Inspectorate, 2015. Promoting Continence for People with Dementia and Other Long Term Conditions [online]. [viewed 10 July 2018]. Available from:

http://www.careinspectorate.com/index.php/guidance/9-professional/2613-promoting- continence-for-people-living-with-dementia-and-long-term-conditions

Holland, S. 2018. Getting To Know Me: Supporting a Culture of Person-Centred Care [online]. [viewed 08 July 2018]. Available from: https://letstalkaboutdementia.wordpress.com/page/2/

KITWOOD, T., 1997. Dementia reconsidered, the person comes first. Maidenhead: McGraw-Hill Education.

Scottish Dementia Working Group, 2017. Our Top Tips for Living Well With Dementia [online]. [viewed 09 July 2018]. Available from: http://www.sdwg.org.uk/wp- content/uploads/2017/02/SDWG-Top-Tips-Final.pdf

Study Trip to British Columbia

I was fortunate to have the opportunity to travel to British Columbia, Canada in February 2018 for a Study Trip as part of the Scottish Quality & Safety Fellowship.  The aim of the Study Trip is to gain insights from other areas and consider how these can be applied to your own area of practice.  I elected to visit the British Columbia Patient Safety and Quality Council as I was impressed by the ethos of the Organisation.  The Council believes a patient-centred, innovative, and inclusive approach from the province’s health care system is essential to improving quality of care.  Along with two colleagues, I made the journey to Vancouver (which turned out to have less snow than Scotland, in the grip of Storm Emma, which we missed the brunt of)!

We received fantastic hospitality during our trip with numerous experiences demonstrating how The Council are supporting Patient Safety and Quality Improvement.  You can see from the map that British Columbia (outlined in blue) is huge geographically.  In the interests of not making my Blog too huge, I wanted to share a selection of my learning experiences!

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Health Design Lab – Emily Carr University

This is a research and design lab where faculty and students work collaboratively on projects with industry and community partners to address complex challenges in health and healthcare.  Emphasis is placed on participatory design research and the involvement of patients, caregivers and healthcare staff throughout the design process.  A range of methods are utilized in order to co-create outcomes and proposed solutions with the ultimate aim of ensuring that those whose health needs are being addressed have a voice in the process.

We were involved in an interactive co-design workshop with members of the Patient Voices Network (who are a community of patients, families and caregivers working with health care partners to improve the health care system).  We participated in various activities in order to create a series of ideas and recommendations to inform future designs of the new St Paul’s Hospital entry and visitor experience.  ‘Personas’ (which are a description of typical and atypical service users, with specific thoughts and needs) were also used in order to broaden the range of experience in the room.

Projects that the Health Design Lab have also been involved in include a digital therapeutic device for delirium and dementia and lighting for residential care.  Further information can be found:

www.healthdesignlab.ca

We were impressed by the energy and creativity brought to the projects by the students from the Health Design Lab.  There is great value in working in partnership with others who can bring a strong design skill set to the process.

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Residential Care Units

I had the opportunity to visit several Residential Care Units, which were focusing on Staff training, environment and improved care for individuals with behavioural and psychological symptoms of dementia.  One of the sites we visited at Youville (Providence Health Care) had been involved in co-design work with the Health Design Lab whilst undergoing a process of “Megamorphosis”.  This is an innovation and improvement project to understand the residential care experience for residents, family and staff.  Building on the insights gathered, the next phase is to rapidly test ideas from residents, family and staff.  Ideas being tested included lighting, resident doorways and work around finding out how residents want to spend their day (residents were provided with cameras in order to take photos of what is meaningful to them).  The work is approached with these 3 themes:

  • Emotional connections matter most
  • Residents direct each moment
  • Home is not a place, it is a feeling

Further information can be found:

http://www.providencehealthcare.org/health-services/seniors-services/residential-care-me/our-journey-so-far/megamorphosis

I was impressed by the level of buy in to the Quality Improvement work and the willingness to try new ideas.  There was a real emphasis on ensuring that residents and families are partners in the process.

Peer Advisors

We spent a morning with a GP (originally from Scotland) in Downtown Eastside, which is notorious for its levels of drug use, poverty, mental health, homelessness, and crime.  It is also known for its strong community resilience and history of social activism.  We heard about the work being carried out in primary care around Peer Advisors.  These are people with lived experience of Downtown Eastside who have used Services.  One peer advisor described the role as being like “interpreters in a foreign land”.

We were struck by the ability of the peer advisors to reach the people who needed support and the value that their experience and understanding can bring to Services.  This can be transferred across settings and consolidates the belief that people are the real experts in their care.

I hope you have found this selection of learning experiences interesting and am happy to be contacted for any further information.  I would hope to share additional experiences in a future Blog, including time with the Patient Voices Network and learning from the BC Quality Council around culture change.  I would like to thank everyone involved in the Study Trip for such great hospitality and willingness to share.  Vancouver is a beautiful, friendly city and I hope to return.

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Contributor:

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Alison McKean, AHP Post Diagnostic Lead, Alzheimer Scotland