A few weeks ago I went to a Café Politique event titled, ‘The Politics of Dementia’. In the end there was not a huge amount of discussion around the political context for the care of people living with dementia but there was a lot of talk around the experience of living with dementia.
For a start, that phrase ‘a person living with dementia’ is the currently acceptable phrase. It is really valuable in that it (a) offers a positive approach to people with this type of condition and (b) widens the focus from the person who is suffering from the disease to encompass those who are living with and caring for the person suffering from the disease. In different senses they are living with dementia.
I mention this because one of the issues which came out of the discussion very strongly was the importance of relationships. The discussion highlighted how the notion of self shifts as the disease progresses and various relationships are changed along with that. The disease:
• changes the way that the person living with dementia experiences their own self (particularly through changes in their ability to perform once-familiar actions and routines);
• changes the way that the person living with dementia experiences their relationships with others;
• changes the way that the community of people caring for the person living with dementia experience their relationship with that person.
I can’t substantiate this with extensive evidence but it seems like an idea worth investigating.
Zeisel argues strongly that we should not hold onto the memories of the person that was, and lament their decline, but (instead) accept that the person still has worth, value and a positive life as they are. Underpinning this is the recognition that the self is not a fixed thing but is fluid or mutable.
In the discussion I suggested that in their comments, some people were subscribing (if implicitly) to a fixed notion of self which (if we think about our own lives) we know not to be true. Some people agreed but one has to sympathise with carers and family – accepting someone as they are, which is not how we would like to remember them is easier said than done. It requires a wilful act of thought in the face of strong emotional attachment to the memory of a loved one.
Anyway – I wonder whether the 3 changes in relationships noted above (if they have any validity) might help in thinking about the place of object handling and reminiscence with people living with dementia? Particularly, I wonder whether that first point, about the changing relationship to one’s own self experienced through things like greater difficult in motor control, might suggest that there is value in finding a way of allowing people to perform some version of old, familiar routines? I wonder also whether that might provide an powerful route to evoking reminiscence.
Alex, TWAM Outreach, was also at the same discussion and we chatted about some of the work she had been doing with people living with dementia and their families. She uses objects to prompt stories from the participants. The stories are often ostensibly autobiographical but what is interesting is that the content is contentious – the families want to interject and correct the story-teller when they are recounting events ‘incorrectly’. Alex resisted these interventions but she could see of the tension that this is creating within the family members. Discussions with colleagues have touched on the notion of ‘reliable’ memories and the difficulty of reminiscence – particularly where potentially unreliable memories evoke strong emotional responses. The discussion is never resolved but clearly it has immediate and deeply felt consequences.
Zeisel, J. (2009) I’m Still Here: A New Philosophy of Alzheimer’s Care Avery: New York