Why do people with dementia do the things they do?

Why do any of us do the things we do? What motivates us? People with dementia are motivated by the same needs and wants as you and me. What we say here about people with dementia is just as true for people without dementia. And this is a fundamental point that is often confused by the way we speak about people with dementia. People with dementia are just people. They have the same needs, wants, desires, motivations as you and me. They don’t become some type of strange alien because they have a diagnosis of dementia. As a person they are continuous with who they were before the diagnosis. They are not mad, or insane, or bonkers. Some of our language has improved over the last few decades but much still needs to be done to encourage people to speak accurately and respectfully when communicating about people with dementia.

What does change in dementia is our ability to process the problems that you and I process automatically and therefore unconsciously (out of awareness) and work out what to do about these problems.

At its most fundamental, behaviour is anything we do or say. And what makes us behave? A stimulus, a trigger, a cause. I smile at you. You smile back. I cry and you feel sad inside. Stimulus-response is a basic way of understanding behaviour. A stimulus or trigger is anything that causes you to do something, or experience something inside and then act.

Triggers for behaviour are external and internal. External triggers are those in the environment around us. The situation you are in may be triggering you to feel hot, cold, calm, annoyed, sad, or frustrated. You walk past a bakery at 7am not having had your breakfast and the smell of freshly baked bread triggers your tummy to rumble. Your brain has registered the aroma and the associations it makes with pleasure and eating trigger your stomach to release gastric juice in readiness for this tasty food. In this way external triggers can cause internal reactions. They can also trigger you to interrupt your early morning walk and turn into the bakery to buy a croissant! The external trigger causes you to act. If you think about it in terms of a sequence it may be clearer:

Smell fresh bread – stomach rumbles – enter bakery and buy croissant

External stimulus – internal experience/response – external response/behaviour

Internal triggers are those we experience inside our bodies and minds. Memory, thoughts, emotions and senses all come together to create our sense of the world and what to do about it. Our brains work out what to do about it extremely quickly and efficiently.

If we think of it in terms of emotional moments in the day we can see how our feelings become involved in explaining our behaviour. Our feelings have physical components and mental or psychological components. For example, when we feel upset/sad we have a thought/image and a physical experience that come together to make the sadness feeling. It may be in response to something we have seen, such as a picture of someone from our life who has died. Memories come and we feel the love we have for them still. A wave of sadness rushes up and we feel tears in our eyes, our chest and throat fill and we reach for the tissues.

We see the picture of our loved one who has died (trigger/stimulus) – remember and feel the love we have for them (internal response, mental and physical) – wave of sadness rises, eyes fill with tears, chest and throat feel full (internal response, mental and physical) – sobbing releases grief (behaviour response) – reach for tissues (behaviour response).

This sequence is mostly internal but is triggered by an external object (picture of loved one) and also involves a box of tissues. Everything else is internal. It cannot be seen or heard by anyone else. Internal experience is private and unknowable by others until we act and reveal what is going on inside ourselves in our behaviour (crying and reaching for tissues). An onlooker may be confused by our upset, not knowing of our love for the person we have seen in the picture. They may provide comfort simply on what they can see without knowing the internal memories and emotions that have been triggered.

Memories as well as emotions may trigger behaviour. As you can see from the above example crying may be triggered by memories of a loved one which in turn trigger feelings. Memories and emotion are often connected. They seem to come at once but studies have shown that there can be a brief moment between them that show that one may cause or trigger the other. Memories can cause emotion. Emotions can cause memories to come. Sadness in response to a photo of a person you loved can trigger past losses and hurts. This is also true for trauma. Current experience can trigger past trauma. Memories, sensory and physical experience can come together to create an overwhelming moment of stress as though the past experience is happening right now.