Earlier this month I experienced the Virtual Dementia Tour for the first time. Along with 24 people who work in social care, we went through the tour in pairs, with most of us then observing others on the tour. The results weren’t exactly surprising to me – we all experienced ‘dementia’ differently, and were united in feeling very unnerved by the realism of the tour.
Ours was just a snapshot of this product, and yet for many people it was a very long 10 minutes. I for one hugely disliked the constant noises I had to listen to and the way in which my senses became distorted. Reflecting afterwards, however, has produced perhaps even greater insight than those 10 minutes of ‘living with dementia’.
My naturally practical side immediately kicked in once I began the tour; I was determined to illuminate my new reality and then find a task to do. I couldn’t hear the instructions at the start of the tour due to the noises being played into my ears, so I decided to set about accomplishing the only task I felt fit to perform, regardless of whether that was the task I was actually charged with completing.
Thus I began to fold clothing and linens, putting them into relatively neat piles, a task I regularly do at home so it came naturally to me. In the feedback I had about my tour, I am reported to have stomped around (I’ve been accused of doing that thundering up and down the stairs at home), made small noises (not uncommon for me, I’m the master of a whole range of small noises to voice everything from irritation to happiness), sniffed a lot (I’d only just got over a heavy cold), jumped at the loud noises (very common for me) and been territorial over the folding (again not surprising, I’m a bit of a perfectionist).
So, despite experiencing some very unpleasant sensory disturbance, I drew upon many of my natural personality traits and gravitated towards familiar tasks in order to cope, and apparently once I became immersed in the folding I was significantly calmer. So what do we learn from this?
Lesson 1) People with dementia are still people, they are not a disease or a raft of symptoms – their personality, likes and dislikes remain with them.
Lesson 2) People with dementia can still achieve things, and they want to achieve things.
During the tour, I did something that the trainer said only one other person in the UK had done since they had been delivering the training over here. I won’t tell you what it was in case you are planning on taking the tour, but in conversation with the social care workers afterwards, the feeling seemed to be that I’d acted differently to most people precisely because I’m not a professionally trained social care worker.
Lesson 3) Does the way in which we educate our professionals really reflect lived experience? Personal experience of dementia is invaluable in helping to produce care and support that is actually caring and supportive for people with dementia.
The fact that so many of the people on the tour found it eye-opening was a great testimony to the effectiveness of the product, but it does make you wonder how many other social care professionals lack insight into dementia and yet deliver frontline care and support every day.
Interestingly for me the tour, rather than being an insightful experience, was actually a reassuring confirmation that everything I’d believed in for my dad’s care, and that I now champion through my work, is very much best practice. Examples of this would be:
Lesson 4) Constant background noise, especially from TV’s and technology, is very unhelpful for making people with dementia feel calm and relaxed.
Lesson 5) Giving a stream of instructions to a person with dementia isn’t likely to produce a positive result, and you can apply that to constant direct questioning too.
Lesson 6) Anyone is capable of behaviour not normally associated with them when they are living with dementia, including swearing or aggression. Don’t take it personally.
Lesson 7) Dementia naturally produces a different reality. We should not try to correct that but instead embrace it.
Lesson 8) People with dementia shouldn’t be restricted any more than is absolutely necessary for their safety and wellbeing. We must avoid being risk adverse, and care should never be controlling or about imposing our will on the person with dementia.
Lesson 9) Dementia is a serious, multi-faceted cognitive disease that could leave anyone aimlessly searching in a permanently unfamiliar place – we must offer kindness, compassion and support to make that search more bearable.
Lesson 10) Communal living can be very problematic for people with dementia, and where it is necessary, specialist care is vital.
Lesson 11) We are all different and must be treated as the individuals that we are.
My only real criticism of the tour is that it gives everyone the same experience, the only differentiation is in how individuals behave when subjected to that. So, whilst it undoubtedly gives a great insight into an example of dementia, those taking it must be mindful of the huge variations in the different forms of dementia, and how different symptoms can be magnified or reduced for each individual.
Lesson 12) Many of the sensory issues you go through on the tour are related to what you can see and hear. It should be remembered that some people will live with dementia but have very good eyesight and hearing, whilst others may be completely blind and deaf (as I wrote about here).
Lesson 13) We were all fit and healthy individuals, but people who are living with dementia could have a variety of mobility and health problems that again will affect their individual experience. Consider how problems like immobility, incontinence or dysphagia would greatly affect how a person lives with dementia.
Interestingly, the trainer said that most people completing the pre-tour questionnaire answered yes when questioned about whether people with dementia got the care that they needed. I replied no to that question both before and after the tour. Why?
Lesson 14) Ultimately, however much we think we know about dementia, and however great we think the care is that we are providing, we can always do better.
Until next time…
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