Earlier this year I met with a small group of carers during a series of themed discussions. I’d like to share one particular session which struck me:
The topic for the session was: The experience of living with dementia – What you think people should know (about the experience of living with dementia).
Some of you who are switched on will immediately be wondering why I was not asking people living with dementia about the experience of living with dementia. That was going on at the same time in a separate group. Nor did I wish to speak to the carers about the experience of living with dementia in the broader sense of living near its presence.
I made it very clear to the small group that I wanted to know what they thought their partner’s would want to share about their own experience.
The group really struggled at first to express what the feelings and experiences of their partners might be. I was immediately struck by the extent to which the years of a prevailing ‘care for carer’ ‘stress and burden’ model can really inhibit seeing the other side of the story. It revealed the extent of the default position that many people have referring to their own experiences and feelings as opposed to those of their partners, which they were asked to focus on.
It was not the case with everyone, however, and a few became extremely thoughtful in thinking back and really putting themselves as far as possible into the shoes of their partner. Nevertheless I found myself using a range (repeatedly) of follow-up questions such as:
‘So how do you think your partner is feeling about this?’
‘How do you know? How do they respond to you? – so what does that action/response tell you about their experience or feelings?’
The discussion highlighted to me what ‘dementia-friendly’ really means within a relationship. If people have lost a sense of identity, control and voice within their closest relationships – in the very place they spend most of their time (at home), then how ‘dementia-friendly’ the community outside might feel could well be irrelevant. This is something we need to address.
Despite the focus of the session, carers produced a familiar offload and spoke a lot about the ‘difficulties’ and ‘aggression when they’re angry’. ‘It’s like looking after a 2-year old’ was another comment in the familiar litany. Whilst acknowledging the frustration behind these statements, I pointed out that no-one in the other group would be describing themselves as like infants.
Clearly these statements associating dementia with aggression indicate that the problem may lie with a lack of understanding and knowledge; limited acknowledgement of care partners’ feelings and experiences; and about the nature of dementia itself. This is no criticism -as the brilliant Wendy Mitchell often says ‘Dementia does not come with a handbook’.
We looked at possible reasons behind such anger. The group offered a whole range of valid reasons –
-frustration at not being able to express oneself as well
-feeling bossed about and told off
-frustration at being tested and questioned when seeking quiet time
-a whole range of other physical illnesses (cancer/heart disease/arthritis)
One carer astutely pointed out that when looking back, he could nearly always pin point a logical trigger to any ‘outbursts’. The powerful message was that such ‘aggression’ is not down to dementia. Rather it is down to situations that we can all find ourselves in. One carer mentioned his wife (who has dementia) says, ‘Sometimes I have a bad day’ – don’t we all?’ – A breakthrough – I knew the empathy was there!
We did eventually draw out lots of insight into the experience of their partner –
- Everyone mentioned the tears and devastation at point of diagnosis
- Everyone acknowledged how their partner frequently wants their own space and independence;
- Acknowledged how their partners complain about being ‘bossed about’ – (a difficult but necessary balance to strike when thinking about support and safety and one’s own concerns)
- About the importance of a safe space to switch off (and also ‘let rip’ sometimes!) after a day that may have included the difficult task of putting on a social veneer – in a way a real compliment to the carer (however painful it might be!)
- Wanting to keep one’s independence with just about the right support.
- Wanting the reassuring presence of familiar faces.
- All acknowledged the frequent ‘You know I love you, don’t you’ – very much a recognition and insight into the condition – and perhaps also a plea implying no little sense of insecurity. ‘Don’t leave me’ or ‘don’t hold this against me’
This session revealed two important points for me:
- Firstly, I still remain so struck by how difficult it was for the carers initially to empathise with their partner. The need to offload for carers is perhaps insatiable. If, I suspect, the same can be said of people with dementia, then we must provide similarly frequent opportunities for them to do so!
- Secondly, the type of practical support needed around the time of diagnosis. Groups complain about lack of follow up ‘from the doctor’ yet how much medical involvement is really needed after diagnosis when what we seem to be looking for are very much the emotional support and the relationship-centred approaches that can equip families in just living the day to day? Should we really be surprised that the support we seek is not forthcoming from professionals with an understandable medicalised focus?
I understand the other group made up of individuals with dementia spent a lot of time mentioning some of the antagonisms they experience in their close relationships with family and friends – and everybody asserted that they are not infants!
Innovations in Dementia can help your organisation offer practical support around the time of diagnosis to equip families to avoid the many traps that dementia sets within relationships. See the Getting Along programme here: http://www.innovationsindementia.org.uk/videos_gettingalong.htm