Learning to support and be with a PERSON Living with Dementia

1. Introduction

Dementia is a disability, not a natural part of getting older.  It is true that many of the people living with this are elderly, but that is not true across the board.  It can hit at any age. It is vital that we see it as a disability as this importantly impacts on how we reach out, perceive and cope with this the person living with dementia.  As such, we can all learn to help that person to manage their condition and retain their abilities for far longer.  It can help with them retaining their self respect, individuality, and sense of self.

People living with dementia cannot reach out to our reality, our world.  We cannot expect them to do that, they have lost the ability to learn new things, to be “oriented to time and place”.  That last phrase is a favourite line used by nurses and isn’t accurate at all.   A person living with dementia needs us to use insight, interpretation, great warmth, and genuine emotions in order for them to be fully supported.

In usual communication, we meet half way with the other person, but for people living with dementia, we need to go much further.

Me———————————-ll—————————————You

Me—————————————————————-ll———Person with dementia

People living with dementia are ‘us’ , all of us.  They are not ‘them”.  Sounds obvious, but how often do we talk about this highly vulnerable group as ‘they’ or ‘them’.  You will note, I hope, that throughout I try to use language in a non judgemental, non labelling way.  This may seem trivial, but it is not.  How we describe a person is how we think of them.  It may seem a mouthful to say, ‘People living with dementia’ and be tempting to take a short cut and say, ‘demented person’.  But a person is not demented.  The person must come first in all descriptions.  It is important because we all, so often, only see the disability and what the person cannot do, not what they can do.  This again can drive our interactions with people.

Dementia is an ’emotion’ driven disability, not a ‘thinking’ driven one.  But we spend so long trying to use words to communicate, and logic, we forget how to use other means of communication.  In fact, we use other means all day every day,  but we don’t concentrate on them.  We have to start to working from the premise that all actions, sounds and movements in people living with dementia, are mea