Journeying through Dementia Designing Post Diagnostic Support with People with Dementia

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I first met James McKillop back in 2001, not long before the publication of his book, ‘Opening Shutters, Opening Minds’. We shared a love of photography and had a similar sense of humour. It was James who introduced me to the Scottish Dementia Working Group (or Working Party as it was called then). I was inspired by their philosophy, by their work and what they had achieved in a relatively short time but at the same time remember feeling very challenged as an occupational therapist to why we were not learning from this in other areas of practice.

It was the Scottish Dementia working group who inspired the development of the supported self-management programme: Journeying through Dementia and in 2004 when the foundations of the research began, they generously shared insights in relation to what a programme aimed at people at the beginning of their dementia journey would find helpful, how the group should be facilitated. Most importantly they reiterated its key focus: helping individuals living with dementia to continue to do the things they enjoyed and which bring meaning for as long as possible.

Eighteen years after that first meeting with James I am excited that Journeying through Dementia is officially coming home to Scotland!! People with dementia have continued to shape and craft the intervention through a programme of research spanning over a decade.  Its most recent iteration is the focus of a large study led by Professor Gail Mountain at Bradford University.

Two demonstrator sites: one in Aberdeen and one in Fife will be piloting the intervention and a set of materials that have been co-produced with people with dementia and with occupational therapists from these sites. We will use this blog to keep you up to date with our progress, reflections and learning so please watch this space.

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You can hear me speak at an event in Dunfermline in February 2018, beginning to share the work in Scotland https://vimeo.com/288130479/f0e7b24685

Contributor

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Dr Claire Craig

Reader in Design and Creative Practice in Health and Co-Director of Lab4Living

Art & Design Research Centre,

Sheffield Hallam University

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Dementia Care for the whole Framily: Books & Videos

As part of the IDEAS Team, I support staff working with people with dementia in NHS Dumfries & Galloway. We take phone calls from health and social staff in our local area requesting advice and support, including Allied Health Professionals. I took an interesting call some months ago from an AHP who had been on a home visit and found it particularly stressful and was looking for some help. The AHP was visiting a woman in her 80s with dementia who was living with her daughter and granddaughter. The woman herself was doing well, the daughter and granddaughter not so much. The daughter was at breaking point – in her 40s, working, looking after her mum and managing a teenage daughter who loved her gran but needed her own space and didn’t really understand why gran did the things she did. The daughter commented that she didn’t know how much longer she could cope, not because of gran but because of her teenager. It gave us a lot to think about.

In Speech & Language Therapy in D&G we use the term ‘Framily’ to mean friends and family; those friends who are sometimes closer to us than family, the neighbour next door, our sister in spirit, the people we choose to be with, as a way of acknowledging that family is not just composed of blood lines but is what you make it and so looks different for every one of us and that’s ok. Being well connected socially can increase both our physical and mental wellbeing and supporting framily with communication is a key part of the SLT role. We invite people to bring members of their framily to appointments if it makes them feel more comfortable. Alzheimer Scotland do a great ‘how to’ leaflet to explain the importance of maintaining friendships that we use often.

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https://www.alzscot.org/news_and_community/news/4398_friendship_and_dementia

Framily matters and it certainly did for this daughter who was trying to care for both her mother and her own daughter. We suggested a referral for support to Alzheimer Scotland and the local Carers centre and a video we use in training, narrated by Game of Thrones Actor, Iwan Rheon, that we thought might help the teenager understand a bit better. https://www.youtube.com/watch?v=HobxLbPhrMc

As it happened a few weeks later I was asked to speak to a group of S1s and 2s in my local High School, teenagers aged 12-14 years. When they walked into class some of these teens were taller than I was and pretty much every one of them was on their phone, instagramming, snapchatting or who knows what! A tough crowd, where to begin? I asked them what they thought of when they heard the word ‘dementia’. The answer surprised, and to be honest shocked me. “Harry Potter” they replied “Dementors… they suck out all your happy feelings and memories and leave you sad forever”.

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Oh my, I thought, that’s just not true. I’m a big Harry Potter fan, but that really wasn’t the image I wanted them to have when they thought of dementia. How frightening, how depressing if that’s what they thought of when they heard the word. I asked if any of them had personal experience of living with someone with dementia and number of them did and during the course of the conversation they talked about how they still loved their relatives just the same. They were a thoughtful, charming and engaged group of young people. They loved seeing photos of the dementia dogs from the Alzheimer Scotland Conference, playing with twiddle muffs and hearing about the Playlist for Life – music after all is pretty crucial to most teens and they could totally relate to the use of personalised ipods. I showed them the Alzheimer Research UK website with games and quizzes and clips of teenagers talking about similar experiences and it struck me again that as AHPs we have a role in the care not only of our patients but of their wider support network and we can often be the people who are asked for advice. https://kids.alzheimersresearchuk.org/teens/

There are some great books available for children and teenagers, both factual and fictional, to help explain about dementia in a constructive and positive way. Below are some of our team favourites. Some of them are available free to families with dementia from your local Alzheimer Scotland resource centre. A complete reference list is given at the bottom of this blog. David Walliams’ book is a particular favourite, about a charming and funny relationship between Jack and his beloved grandpa who has dementia and the adventures they share together….. until one night grandpa disappears. You might know of others, in which case we’d love to hear about them.

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Although I’m a bookworm, not everyone is and I particularly like this video too. It’s accompanied by some sound tips for caring for children affected by dementia that AHPs may want to signpost people towards.

“Love is a strong and powerful feeling that goes through your whole body. It’s more than just an idea. It was there long before dementia came along and it’s not going anywhere.” says the young narrator. https://www.dementiauk.org/children-and-young-people/.

There are more links to sites that feature books for children and teenagers to explain dementia below. Many libraries in Scotland will order children’s books , and in some areas adult ones too, for you free of charge for pick up at your local branch and some can be sent free and direct to your kindle or tablet.

https://www.booktrust.org.uk/booklists/c/childrens-books-on-dementia/

https://reading-well.org.uk/books/books-on-prescription/dementia

https://www.youngdementiauk.org/dementia-books-children

https://www.alzheimers.org.uk/recommended-books-about-dementia-children-and-teenagers

The title of our weekly Alzheimer Scotland AHP blog is “Let’s Talk About Dementia: Never in the history of mankind did not talking about something scary make it disappear”. AHPs can play a role in helping the smallest (and sometimes tallest!) members of our framilies talk about Dementia and hopefully make it a little less scary for all.

Contributor

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 framilies 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. 

Bibliography

Alzheimer Scotland & NHS Scotland Understanding Dementia, 2009, Health Scotland

Matt Elliott & James M Threadgold, When Grandma came to stay, 2015, Alzheimer’s Research UK

Matt Elliott & James M Threadgold, Grandad’s Hat, 2015, Alzheimer’s Research UK

Virginia Ironside, Visiting Gran’s New Home, 2010, Barchester Healthcare & Alzheimer Society

Virginia Ironside, Visiting Grandad’s New Home, 2010, Barchester Healthcare & Alzheimer Society

Mental Health Foundation, The milk’s in the oven, Changing Minds

David Walliams, Grandpa’s Great Escape, 2015, Harper Collins Children’s Books

Report from the World Congress for Adult Guardianship – 3 things you can do if you are interested in this area

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In October 2018, I was privileged to attend, and speak at, the 5th World Congress for Adult Guardianship (WCAG) which was held in Seoul, South Korea.  The WCAG is held every two years and its purpose is to promote the principles of, and share good practice on, protecting the rights of people who are or may become unable to make decisions for themselves.  This encompasses adults of all ages and disabilities/diagnoses including, for example, learning disability and dementia.  The focus of the South Korea WCAG was “Living together with people with cognitive impairments in the community”.  Presentations came from a large number of countries including South Korea, Germany, Netherlands, Spain, Japan, Hong Kong, Taiwan and Singapore as well as the UK.

Some of the key issues discussed at the conference were:

Presumption of legal capacity for all.  This means that every person should be treated equally regardless of disability, and should have the opportunity to make his or her own decisions, with appropriate support where necessary.  This is underpinned by Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (2006).

Best interpretation not best interests.  This is an important distinction when protecting people’s rights, will and preferences.  Acting in someone’s best interests implies a decision made by someone else – and it may not necessarily concur with a person’s will and preferences.  Making a best interpretation of someone’s will and preferences shifts the focus back to the person (remembering of course that we all have the right to make our own decisions, whether “good” or “bad” – even if we choose a different path from what might be expected).

The importance of voluntary measures.  These are tools for people to use whilst they are still capable of indicating their will and preferences, such as Power of Attorney (appointing a trusted person to make important health, welfare and/or financial decisions) and advance directives/planning (stating how you want to be treated in the event of future illness or disability).  Generally, putting voluntary measures in place avoids the need for more formal, court-based processes such as guardianship.

Elder abuse.  Many countries described challenges in protecting people’s rights, will and preferences in a way that allowed for best interpretation not best interests.  Most countries are not compliant, or fully compliant, with the UNCRPD; for example, some countries have a presumption that the next of kin can act as a substitute decision maker (this is not the case in Scotland of course).  Elder abuse is potentially more prevalent – or easier to hide – in a system where the next of kin is allowed to make decisions whether or not that is, or would be, the preference of the person.  There is only one country in the world which has introduced a system and principles which are considered to be compliant with the UNCRPD: Peru.

My role in the Congress was to describe Scotland’s My Power of Attorney campaign, focusing on how we created a successful media strategy to influence people’s behaviour.  The campaign, which started in Glasgow in 2013, has achieved well-publicised success in increasing the number of people in Scotland with a Power of Attorney.

3 things to do if you are interested in this area:

  1. WATCH the film Edith and Eddie, about a couple who get married in their nineties. Edith has dementia and there are differing opinions about her decision-making capacity.  Find the film at https://vimeo.com/254418727 (29 mins).  You will find no better way to think through the issues of best interpretation vs best interests – it’s a must-watch!
  2. CHECK OUT the legislation/best practice principles. Our own Adults with Incapacity (Scotland) Act (2000), the UNCRPD and the European Convention on Human Rights provide the backdrop (all easy to find on the internet).
  3. TAKE ACTION for yourself, those closest to you and the people you work with – get that Power of Attorney in place today and encourage everyone to do the same! 

Contributor

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Jill Carson

Consultant – Public Policy, Alzheimer Scotland

Having led work on dementia for NHS Greater Glasgow & Clyde from 2012 – 2017, I’m delighted to still be contributing to dementia policy and practice with Alzheimer Scotland.  In particular, I have a strong interest in post diagnostic support, including planning for the future with Power of Attorney.

60 Seconds with Juliet Harvey Researcher in Sedentary Behaviour

What is sedentary behaviour?

Sedentary behaviour science is an emerging and very interesting area of work.  It’s not about how active you are or levels of exercise, sedentary behaviour is defined by both posture (sitting or reclining) and low energy expenditure, during waking hours of the day [1].  Sedentary behaviour is a distinct and complex behaviour that most of us do frequently throughout the day without a second thought.  Of course, when we break sedentary time we perhaps displace it with movement, standing still, exercise, sleeping, etc. therefore it’s very connected with other behaviours [2]. Thus, I believe individuals get the best deal when we think about where we expend our energies across the whole day: sedentary time, physical activity, occupation and sleep time.

Why consider sedentary time?

Unfortunately, it would appear that we become more sedentary with age [3].   Lots of sedentary activities are valuable and important to us in our daily life: we all need time for rest and relaxation; we get cognitive gains if we sit and challenge our brains with puzzles, games, crafting or learning something new [4].  Therefore, it is not my wish to demonise the act of sitting in itself.  However, sitting because we are bored or have nothing better to do does have a negative impact.  Research shows that frequent prolonged bouts of sitting or high level of daily sitting behaviour have been linked with negative physical and mental health consequences: low mood, obesity, diabetes, cardio-vascular disease and frailty [5, 6].  

What can we do to reduce sedentary time?

First of all notice it! Think about times in the day when you sit for long periods, why are we sitting at that time? What results do we notice from sitting for this length of time? Could this be changed? For example, when I sit for more than an hour I get a sore neck, sore hips and feel rather sluggish. In order to try and prevent these symptoms I aim to stand up and move every 30mins between 8am and 8pm.  As a result, I really move every 20-50mins, but at least before the hour is up! We are all different, find what’s right for you and remember not all sitting is bad! It helps to have a plan of what you are going to do during breaks in sedentary time, you may enjoy just pottering, it may be a different approach to your working day or you may use this time to do bouts of exercise, such as strength or balance training, examples of these types of exercises can be found on the Chartered Society of Physiotherapists website: https://www.csp.org.uk/public-patient/keeping-active-and-healthy/staying-healthy-you-age/avoiding-trips-and-falls

A study [6] adopting a tailored programme to help frail older adults sit less found that the participants increased physical function when they focused on goals set around their own personal sitting behaviour.  Thus, along with providing the known benefits of reducing sitting time, the improvement in function provides a gateway to meeting other aspects of physical challenge and helped make day-to-day activities more manageable.   

Top tip if you wish to change sitting patterns

  • Start small & achievable
  • Have a plan for what you want to do when breaking sitting time
  • Build the routine, then you can make the break times more challenging
  • Don’t be too hard on yourself it’s not easy to change

Contributor

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Dr Juliet Harvey

Practice Development Physiotherapist

Juliet is a Physiotherapist and Researcher from Glasgow.  She has a particular interest in the interaction of health and sedentary behaviour across the life course.  She completed her PhD in 2016 titled “Reducing Sedentary Behaviour in Older Adults”. Juliet has published in peer reviewed journals and presented her work at national and international conferences.  She enjoys hearing about and sharing ideas on social media @DrJulietHarvey and leads the Active Wards Group at NHS Greater Glasgow and Clyde.  Her research portfolio can be found here: https://www.researchgate.net/profile/Juliet_Harvey

References

  1. Tremblay et al. (2017) Sedentary Behaviour Research Network (SBRN) Terminology Consensus Project process and outcome: https://ijbnpa.biomedcentral.com/articles/10.1186/s12966-017-0525-8
  1. Van der Ploeg and Hillsdon (2017) Is sedentary behaviour just physical inactivity by another name? https://ijbnpa.biomedcentral.com/articles/10.1186/s12966-017-0601-0
  1. Harvey et al. (2015) How Sedentary are Older People? A Systematic Review of the Amount of Sedentary Behavior: http://journals.humankinetics.com/japa-in-press/japa-in-press/how-sedentary-are-older-people-a-systematic-review-of-the-amount-of-sedentary-behavior
  1. Yonas et al. (2011) Engaging in Cognitive Activities, Aging and Mild Cognitive Impairment: A Population-Based Study: https://neuro.psychiatryonline.org/doi/full/10.1176/jnp.23.2.jnp149
  1. Rezende et al. (2014) Sedentary behavior and health outcomes among older adults: a systematic review: https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-14-333
  1. Endrighi et al. (2016) The effect of experimentally induced sedentariness on mood and psychobiological responses to mental stress: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4771942/
  1. Harvey et al. (2018) Breaking sedentary behaviour has the potential to increase / maintain function in frail older adults: http://www.jfsf.eu/Article.php?AID=v03i01_026

Further Reading

Sedentary Behaviour Epidemiology by M Leitzmann et al. (2018) Springer Series on Epidemiology and Public Health, New York.

#ThinkActivity – Using passports to support people to improve their health and well-being by Lianne McInally and Fiona Black online at: https://www.careopinion.org.uk/blogposts/753/thinkactivity—using-activity-passports-to-s

Personalised Sitting Break Jar by J Harvey (2017) online at: https://sedentaryblethering.wordpress.com/2017/10/21/personalised-sitting-break-jar/

Active Office Habits by J Harvey (2017) online at: https://sedentaryblethering.wordpress.com/2017/05/20/active-office-habits/

What the People Say…. Evaluating Speech & Language Therapy Groups for people with Dementia

We’ve been involved in group therapy for all kinds of communication disorders for many years here at Royal Victoria Hospital in Dundee.  In 2012 we started offering group therapy to people with dementia.  We invited people on our caseload to a group if they had a recent dementia diagnosis and their primary symptom involved speech and communication.  The group runs weekly in the clinic and we’ve held a social conversation group in a local café which we hope to organise on a monthly basis.

Over the years, the group has supported many people throughout their dementia.  The group itself becomes a haven for sharing, camaraderie and support.    We’ve each experienced a range of emotions from sadness to humour to joy together as a collective.  We facilitate and support conversations and offer options to repair communication breakdown.  The meetings have a focus such as current affairs, local news, sporting events or reminiscence as well as inviting guest speakers to come along and share their roles.  The dementia nurse consultant joined us once as well as the nurse from the post-diagnostic team.  The group are interested to hear more about the Dementia Dogs Project, the local choir and the Scottish Dementia Working Group.

At the end of each 10 week block we invite relatives to join us for a cup of tea and we all get involved together to share our experiences and consider what we want to add into the next group.  This is an opportunity to find out what works and what doesn’t work and to adapt plans to suit.  Relatives are able to give clear perspective of how the group impacts on their life.  One wife of a regular member said:

‘He really enjoys it and looks forward to coming.  He’s always cheery afterwards.  The group is definitely very important to him’

‘Camaraderie’ is a word used by many group members when we try to elicit what it is that they enjoy about each session.  Confidence gained from feeling supported and understood is visible each week.  Our members said:

‘Lots of people are in the same boat.  You know you’re not alone.’

‘We’re all the same and we’ll get the answer when it comes.  We can make as many mistakes as we want.’

‘It’s almost too much fun.  We’re all relaxed, we’re quick to laugh.  We’re not laughing at anyone – we’re laughing together’

‘You start a sentence but you can’t finish it – it’s not there.  Sometimes you’re only understood by one person- you.’

Talking Mats and Emotional Touch points have both been used to evaluate the groups and we have gathered considerable qualitative feedback.  We asked members to describe how they felt during the group and provided a range of words for them to choose.   They selected words such as ‘encouraged’, ‘supported’, ‘respected’, ‘confident’, ‘involved’ and ‘hopeful’.  They were asked how they felt in conversations outside the group since attending each week and they all selected ‘confident’ – one member described feeling ‘a lot more confident’.  We also asked members to consider how they felt about the activities in the group and they used the yes/ no chart to help them make decisions (an example below).

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Our goals are to provide conversation opportunities in a ‘safe’ communication environment and to maximise the therapeutic power of sharing experiences to develop confidence.  We measure these goals by the qualitative feedback we receive, the regular attendance each week and the demand for more group opportunities One member described the shared experience helped him to adjust and accept that he can live well with dementia.  Offering hope is an important role for AHPs and this can be achieved with the therapeutic power of group therapy.  By the final session, members were recorded as saying:

‘I think it was really the best thing’

‘We all got a lot out of it’

‘Coming here every week – I realise I can fight this disease’

‘I enjoyed it better each week – lots of free chat and laughter’

Contributor

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Jenny Keir, Speech & Language Therapist, RVH, NHS Tayside