“I want to go home” by Wendy Chambers

 “I want to go home” – why people with dementia ask this & an expert opinion on how to respond

#WorldAlzheimersMonth

Isn’t why just a great question?

Possibly it’s more of a marmite question; one that we either love, hate or can tolerate but only in moderation. Certainly as a parent it can wear thin, after a busy day, when being asked why for the umpteenth time by a curious, insistent child.

September is World Alzheimer’s month, with national Alzheimer’s Day earlier this week, Tuesday the 21^st.  Which brings me to why – why do we have awareness raising months and days? What’s the point? And when there seem to be so many of them, what difference can they make?

World Alzheimer’s Day is an international campaign to raise awareness and highlight issues faced by people affected by dementia, with Alzheimer’s being one of the most common types of dementia. It is an opportunity for people and organisations to demonstrate how we can overcome stigmatising and other challenging issues people with dementia face and help people live well with what is a long term and terminal condition.

The 5 Whys technique, developed in Japan in the 1930’s, recognises that sometimes the most effective answers come from people who have hands-on experience of the process or problem in question.

One such tricky question which staff and unpaid carers face frequently is when someone with dementia says “I want to go home”. What do we say? How should we respond? What is the person actually asking?

Recently I read a blog by Norman McNamara which provides an expert and insider view answering the Why of this tricky question. Norman lives with a diagnosis of Lewy Body dementia, and his reflection on why he asks and what he actually needs in response provides some very simple, useful advice to carers, nurses, AHPs and doctors alike. So in the spirit of Why and World Alzheimer’s month Norman has kindly agreed to share his thinking with us.

This is Normans blog.

“How many times have you heard someone with dementia say “I want to go home” It has to be one of the most common things that’s repeated many times by those with dementia when most of the time they are quite clearly still at home and have lived there for a very long time. And yet they still say it with that quizzical look in their eyes and a feeling of confusion. Those who are placed in care homes also say it, even when they have lived there for quite a while so the saying applies in many situations, but what does it mean?

As a person living with dementia and somebody who says the same thing (I am told by my wife) when I am “Sundowning” it’s something that’s puzzled me for a while and for what it’s worth, in my humble opinion, this is what I think it means. So when I say I want to go home? Does this mean my birth town of Bolton in Lancashire? Well, as much I am so very proud of my Northern roots, and rightly so, I fell in love with Torquay the moment I arrived here over 25 years ago and may I say wild horses would not get me back up north, I really do believe Torquay is the best place in the world to live, so no, it’s not that.

Do I mean my spiritual home? Well, I am a roman catholic but a much lapsed one and sorry to say lost my faith years ago because of world and personal events.

So, what do I mean when I look at my long suffering wife and say I want to go home?  After much discussion with my wife who was a carer for over 30 years before she had to stop to look after me we have come to this conclusion. “Home” is a place of safety, home is a place of reassurance and home is a peaceful place with no worries, no confusion and no troubles. When I ask to GO HOME Elaine always tells me all will be ok, holds my hand, reassures me that I am safe and makes me feel that all will be ok. I have always believed that no matter how poorly you are with dementia, no matter at what stages of it you are in with dementia, somewhere, deep down you know you are really ill, you know something is very very wrong and you know there is no cure. The worry of all that can become all too much at time, but can’t it for us all?

Doesn’t each one of us at some point feel like this, don’t we all need reassuring at times and be told that all will be ok, not to worry, or at least try not to. You see? People with dementia really are no different to anybody else, we really are all the same, and because someone put us into that “Box” this is what feeds the stigma around it. Now I am not saying this is the correct explanation, and it is as I said, just my humble opinion, but it’s got to be worth a shot don’t you think? Because even if I am wrong, what harm can it do to reassure those with dementia?, hold their hand and tell them try not to worry and they are loved so much by family and friends, I am sure it won’t do any harm and can only help them all.”

Norman is the founder of Global Purple Angel Awareness Campaign

You can follow him on social media @NamaraNorman or his blog on Linked in https://t.co/MT70CjdzDe?amp=1

Wendy Chambers

Alzheimer Scotland Dementia Consultant, NHS D&G  @wendyAHPDem

Let’s Enable not Disable by Sarah Geidesz

You might remember me as a self-care obsessed student harping on about ways to keep ourselves well over winter. Well, I’m back again, now as a qualified Occupational Therapist. I know can you believe!? I was very privileged to have been given a role within the children and young people’s service here in D&G. It’s been a busy few months since entering the post and although self-care remains just as important I wanted to share another subject that means a great deal to me and one that I hope after this blog may come to mean a great deal to you to.

That subject is enablement.

What is enablement? 

By dictionary definition enablement means ‘the action of giving someone the authority or means to do something’. As someone who has worked within a caring profession for most of their life this definition got me thinking, do we as healthcare professionals truly give people the authority to do something? I can only speak for myself yet I know that I have often been guilty of ‘doing to’: to dress, to wash, to feed. If we consider an enablement approach ‘doing to’ forces people to become passengers within their own lives. Even with the best intentions it can be disempowering, limit choice and control and be further disabling. 

Enablement accommodates individual need, challenge or disability and if embedded into practice can support children and young people’s development, learning and communication. By being enablers we can encourage children and young people to participate as fully as they can in their own lives and reach their full potential. The approach complements evidence that children’s health and wellbeing can impact their later life chances and experience. So if we enable from the get go we have the potential to broaden what opportunities they have access to across their lifetimes. To be able to influence better life outcomes is surely what it is all about!? I know for me being able to positively impact children and young people’s lives was the main reason I applied for this position and what better way to do this than through becoming an enabling practitioner.

Let’s talk real world

It may be evident through definition why enablement has become a passion of mine but if you’re anything like me you’ll prefer real world situations and this summer I got to experience just that.

As a student I had spent a placement within the service I currently work for. My placement educator was a very experienced therapist who had a real passion for enablement. She had done countless work to disseminate her knowledge across the region to empower parents and those in health and education to truly enable children and young people with disabilities. As part of this she had started an enablement group alongside a third sector organisation who run a cafe for young adults with disabilities. The group was created to give enablement opportunities to young people who were known to the service. As she left the service I was honoured yet daunted to have been trusted to carry this group forward.

This year’s enablement group ran for four sessions throughout the school summer holidays. Three children were identified to participate and were invited to attend. The sessions involved working in different parts of the cafe with some time for group reflection. Instantly within the first session the conversations they were having amongst each other were enough to warrant the group a success. One of the children who already attends high school was asked by another who was due to start about their experiences. This was a beautiful naturally occurring opportunity in which they were both able to explore their disabilities, share their anxieties and reassure each other.

By the second session, I quickly felt myself feeling a lesser need to be involved in the tasks required of them, to stand back and let them experience it for themselves. In doing so I could observe how they were truly participating, how they interacted with others and their true capabilities. As the third session came around their confidence and skill had notably grown. They were interacting well with other staff and customers; they were competent in the many tasks required of them and were able to reflect accurately on the skills they had acquired during each session. By the final group those who attended and their families were reporting significant changes in confidence, surprise at the true nature of the children’s abilities and were even requesting for further access to opportunities such as this. 

Family preparing lunch together at home

Despite being passionate about enablement from the get go even I was surprised by what they were capable of achieving. In every minute of each session I was blown away by their determination, their adaptability and their willingness to get stuck in to a wide range of tasks. Many of which they had never had opportunity to participate in before, that were therefore completely unfamiliar to them.  They were able to demonstrate an ability to overcome both physical and emotional hurdles and experience life as we all do. Through a web of trial and error, risk taking, exploration and mistake making. Experiences that we all encounter that enable us to learn, develop ourselves and find our place in the world.

A lifelong lesson

Running the enablement group was a significantly important learning curve for many, me being no exception. It taught me that even with the knowledge and passion in an approach that you can still hold assumptions and reservations about the capabilities of others and that often without knowing this can influence the decisions you make about what opportunities people have access to. It reiterated to me that you’ll never know until you try and that by not trying it may cause more harm than good. For these children not exposing them to such experiences is disabling, it denies them a wealth of opportunity, of discovery, of self-actualisation of a level of independence that will see them well into adulthood and enable them to live rewarding lives. This is why an enablement approach will fuel my way of working for the rest of my career and I hope that by reading this it too makes its way into your practice.

Sarah Geidesz, Occupational Therapist for Children and Young People at NHS Dumfries and Galloway

The Big IV Fluid Challenge by Megan Irving

Megan Irving is a Trainee Improvement advisor for NHS Dumfries and Galloway

Effective Conversations by Lisa Muirhead

‘Never be afraid to ask questions’ is something I’ve found myself encouraging service users and my colleagues to do. Inadvertently I’ve realised by saying it I am reminding myself to do the same and make these enquiries however big or small and in whatever circumstance. When the opportunity to participate in further Effective Decision Making (EDM) training arose last year I was really interested but at the same time I had many many questions! What exactly did this involve? What would the expectation be at the end of it? Would I have capacity to build this into an already busy workload? … When I reflect back on the 12 week EDM journey I have just been on, I am convinced more than ever that sustaining enquiry and asking questions is imperative at all levels of interactions within our services. The ability to tolerate the uncertainty of not always having the answers and not feeling compelled to give an answer or solution to the questions is another challenge! 

The EDM training has been an enriching learning journey. It has challenged my thoughts on our current practices when interacting with our service users and each other. It has also opened my eyes to a very different style of learning and the benefits of coaching. There was not so much a ‘thing’ to learn and then teach the ‘thing’ to my colleagues which is the proforma for most learning opportunities I have undertaken. This was a very open journey of learning with direction which was facilitated well by Kate Malcolmess but ultimately no pre determined answers or plan of what the final outcome would be. To be on that journey with a mixture of Children’s AHP representatives from all over Scotland, of varying backgrounds but with no hierarchy or service bias was also enriching. For all the fears I had of taking on an unknown entity, by the end of the training I felt empowered that I was part of something bigger, something I believed in and something I could see making a positive difference to our service delivery and ultimately our service users.

Looking firstly at how it has changed my thoughts on current practice, one of the key elements I have recognised is my reliance on processes and systems. Yes, they are in place to ensure consistency and strive for effectiveness but I find myself questioning more who are they effective for? Considering the structured process of many referral management systems for example, referrals come into our services (mostly written with no prior discussion beforehand), decisions are made and this is communicated back in written format. I think our service has already taken great steps in increasing our telephone triage with prospective referrers. It is worth considering though if it could be enhanced further by having a conversation with who is most bothered before the point of request. The opportunity to discuss what the concern is, the context of this and what help (if any) is being asked for seems invaluable when striving for effectiveness and engagement. Agreeing the outcome of the request for help with the person concerned rather than perceiving the problem and deciding the outcome for them feels much more responsive and inclusive.

I recognise that there is a comfort following an established process and individuals can be at varying degrees accepting the uncertainty of change when these processes are questioned. Starting the conversation though seems the best place to start and that was key to the learning style of the EDM training. 

Moving on to reflect on the style of training delivered, I was aware that there was limited lecturing and instead we established smaller working groups to discuss key topics. There was a strong emphasis on having a shared vision and clarity of ground rules which are recognised as key principles to successful group working. There was also a strong emphasis to avoid suggesting solutions to problems or concerns and instead we were encouraged to ask questions and hence coach each other. I hadn’t realised how ingrained my practice was to default back to problem solving mode and it was a constant conscious effort at the start not to do so! As a health professional and a person I recognise that instinctively I want to help others however it was a challenge not to provide this ‘help’ in the way I am so accustomed to. There are times when my professional expertise and suggesting treatments is the right thing to do however having such a solution based approach to concerns can be restrictive rather than assistive. I realise facilitating someone to question their thoughts and actions about a concern is far more enlightening to both them and me than adding to the pool of ‘helpful’ suggestions. The skill of coaching is something I would really like to develop further and I have an even greater appreciation of the value of this now in peer supervision.

What I have also recognised as an outcome of the training is where I place value on the job I do. I appreciate that I cannot measure how good a job I have done or how effective I have been purely from the number of patients I have seen. Instead I place much greater value on the interactions and conversations I have and the immense impact this has on responding to concerns not just attempting to provide ‘treatment’.

I love what a good conversation can bring, you can feel inspired, enriched, enthusiastic, connected and informed. There is a greater chance of everyone feeling understood and ultimately this enhances our relationships with our service users and between services. This training feels like the start of a journey and while we do not have a definitive destination that feels ok. It actually feels more reflective of the training to shape this together as we move along and create a culture of practice we can all value and sustain.

Lisa Muirhead is a Children’s Physiotherapist for NHS Dumfries and Galloway