“I want to go home” – why people with dementia ask this & an expert opinion on how to respond
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 21st. 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
Alzheimer Scotland Dementia Consultant, NHS D&G @wendyAHPDem