Digital Timelines – “Together in Memories’ – 5th May 2016 – Izola (Slovenia) “Coping with dementia for informal carers and family members”



We all know the consequences of dementia or a damaged brain caused by another illness, for example a stroke. This can result into changes in emotions, in cognitive functions like memory loss / problem solving, or in personality.

This is hard for the people who suffer from dementia, especially in the beginning of the process, because most of them are aware of what’s going on. But, it’s also hard for the partner, children and informal carers. Bit by bit they lose their beloved person as they know them.

Let’s focus on what happens to the care givers, because I think DT can help them to understand more and more about the illness. However this requires the capacity to support the ill while remaining alert of emotions, feelings and coping mechanisms, as no one reacts the same to changes in a relationship.

Changes in the relationship

You can compare a relationship to a big rope, with a myriad of threads. Each of these represents a fact or feeling. Everyone has its own rope linking them to another.

Obviously there is a difference between the rope linking you to your children, partner, close family members, friends, a neighbour…

In case of dementia the surroundings, and especially those closest by, must come to realize that they will have to create a new, other rope, as they are dealing with a changed personality. This can be a difficult process as there are several mechanisms which can intervene.

Which mechanisms are playing a role?

  • The substitute role. The roles become reversed. To avoid the reality of the other persons deterioration you take over their role.
  • Parentification. You take on a parental role in an attempt to guide the person suffering from dementia. This can cause confusion on an emotional level for the care giver as there can be large changes in behaviour, personality, or capacities. It might, for example, be very difficult when you knew a proud person, who is now changing into someone who swears, can no longer take care of him/herself, someone who has lost decorum. Herkenning?
  • Anticipate mourning. There is a big difference between mourning over a deceased and mourning the loss of a beloved that is still alive, but almost unrecognisable. We call this a process of adoption. ??

What can DT contribute to this? process, from the perspective of partners, family members and informal carers?

1e A PDM (Personal Digital Memory) can be used as a tool to comfort, support and encourage interaction with the person with memory loss.

2e Making a PDM helps to see the several threats of the rope and convince that there is still a strong connection between f.e. a daughter and her father with dementia. It gives the opportunity to add new dimension in the relationship.

3e As we have seen is the process of mourning very difficult. The care giver must find a new balance between his or her own feelings and possibilities to care. Create a PDM and working with this instrument can help to recover their own balance as informal ca

5e accept that people who have a relationship with the person with dementia or other brain damage can have a different response

Arlette Van Assel – EURAG member