Identity and dementia


People with dementia and an identity both before and after they develop the condition.  They might have been a parent, a spouse, an employee, a business owner, a pet owner, a driver and someone who loves travel and/or being at home.  The family member who becomes their carer will have their own identity within that network of various identities that we all have.  I am a parent, solicitor, cat owner and someone who loves both travel and spending time in my house pottering about.  My persona as a solicitor, is different when I am pottering in my kitchen baking cake, at home I am relaxed and often alone, so no need to give consideration to anyone else.  As a solicitor, firstly I cannot come to work in my dressing gown, but could cook in it at home if I choose!  I am also instructed by my client, so my focus is on their desired outcome for the situation and depending on the circumstances, if the issue is confrontational, might have to ensure that I am prepared for whatever might happen, including a number of different outcomes and prepared to hold my ground in the dispute.  The skills and parts of my personality that will be to the fore are very different.


One of the things that can happen to people when they develop dementia is that it can bring about changes in personality, some of which can be unpredictable.  Dementia is not always about confusion and memory loss, there can be other ways that it presents.  Even if it does present as memory loss, as the person with dementia becomes more dependent upon others to support them, there is a loss of the role as an independent person.


The person with dementia then might not be able to work, drive or socialise in the way that they did before, forgetting how to do these tasks and forgetting who their friends are.   This can isolate them further and it is not uncommon that friendships slip away, as the friends do not know what to say.  I have even heard of family members asking if dementia is contagious!


The carer then also has a change of role, from family member, spouse, child etc to carer, which for spouses is a loss of intimacy that is often very much grieved over.  There is a loss of the ability to share the memories of their life together, which might have been many decades long.  Or the memories of their life together might be muddled, so the person might remember the details of an event, but misremember who is was with, which can also be deeply upsetting.


For carers of a different generation, there is a loss of the role of being part of the cared for generation, as parents care for their children.  Then when the parent becomes unwell, they become cared for and the role switch can be difficult to cope with.  Having to wash a parent is a big step across a dignity threshold that all parties at one time hoped would never happen!


Caring takes time and that time that might otherwise have been spent with family, friends or hobbies needs to be used for something else, so beyond having a change in role within the family, they can lose aspects of their wider identity.  They may even have to change their working arrangements to accommodate a caring role.


The loss of identity for all parties in a dementia journey can be challenging for each of them in their own way.  So whoever you are, have compassion for anyone in a dementia journey.