Seeking permission is constant in a person with dementia's life, especially as they move from the early onset to mid-stage dementia. Families and staff just have to close their eyes and listen to what people with dementia are saying, and by doing this, they will notice that there are constant questions. These questions could be, "Can I come?" "Am I allowed to?" "When is this?" Could I?" and so on. These are very, very common questions when supporting a person who has dementia. To recognise this, we need to understand the following statement: Questions are seeking approval, approval is seeking permission.
And once you understand this, dementia care actually becomes a lot simpler place to be. Now, we have heard the expression that actions speak louder than words, and for people who have dementia, actions are probably used more than we realise. It is apparent from conversations with care professionals and families, the strange actions and behaviours begin at the start of the person's journey of dementia. Looking back, it could be apparent that some people may have had dementia for many months or even years before they have had a formal diagnosis. Things such as putting keys in unusual places, the person being more agitated than usual, being over possessive and not wanting to be around groups of people, are signs that something may be wrong. All these are non-verbal clues that something is changing in the individual. Then you have big signs such as memory loss, confusion.
Now, the family translate this and investigate further, maybe with a doctor or a memory clinic. Everything I mentioned was non-verbal and a person probably doesn't even realise they are having these issues. Once the person is diagnosed, these unusual things will start to become more regular events and we will label them as dementia traits and not a form of communication. If left without being translated, these may become embedded into a person, which leads them to become a constant frustration as they are now negative behaviours. This is because the brain feels like communication is being ignored. Sometimes the situation gets even worse, and because we may react to the behaviour without understanding the reason why it's happening. The person with dementia will then use it again and again because they now know that they will get attention.
Extreme, but common, examples of this could be swearing occasionally and then, unfortunately, constantly. This will normally be caused through the reaction of a family member and the realisation from the person with dementia that they are now getting additional attention. A great dementia interpreter will take time to understand and look at what the person is telling them. Dementia interpreters will help all to understand not to react to new behaviour such as swearing so that that doesn't become a constant negative form of communication. Dementia Interpreters should help families to understand that people with dementia need to retain a level of control over their lives, safe risk-assess control, empowers the person and not their dementia.
When you take away control, you take away a part of the individual, and you actually allow the dementia to control both the person and you. There are so many examples of families doing this, but there are also many examples of care providers doing this too. This is because we care too much. We want to do everything we can for the individual. We don't understand what they are telling us when they do what they do and we disempower the person while empowering the disease. Behind every dementia is a person. They are still there, they are still trying to talk to you, they just can't talk your language now. So you need to talk to theirs. You need to learn the language of dementia.