Dementia Action Week #DAW2019
Today marks the beginning of Dementia Action Week – #DAW2019– and while there is a spotlight on positive actions surrounding dementia we want to take this opportunity to share a few perspectives gleaned from our 5 years of supporting people with dementia and their families. So, each day this week we’ll be serving a parcel of Filo into the dementia debate.
Dementia is associated with impairment in memory able to recall specific data and information. Memory issues such as this can lead to a reduction in a person’s sense of self. However, the way in which a person with dementia is able to maintain a sense of who they are is by how others make them feel. When recalling the details of an event or situation becomes difficult it is the emotional impression made which lingers.
‘I will now not remember, often, what people have said to me and what I’ve said to them, but I will remember the conversation, and how it made me feel, and how that person made me feel.’ Keith Oliver, quoted during BBC documentary.
‘Dad remembers very little of his day at The Filo Project but he always comes back happy and very often singing, which is great’
‘I just wanted to reiterate how important the Filo group is for John. On a Tuesday and Thursday evening, following his Filo sessions, he is at his best. He is in a good mood, he is not worrying about things or falsely accusing people of things. On Mondays and Wednesdays when he is struggling with his Alzheimer’s I can usually help bring him out of his confusion, paranoia and depression by talking about where he is going the next day.’ Carer of client.
How can positive feelings be generated? Dementia can alter the balance in relationships and it can be useful for those supporting people with dementia to be sensitive to this. How and where an individual with dementia is ‘positioned’ in relationships or situations, or more importantly, how a person is able to position themselves is crucial. Often there is greater reliance on others but people with dementia are not simply passive receivers of care but individuals who’ve led rich and interesting lives and have much to contribute. See here notes from one of our hosts on how she works with people to maintain a balanced relationship. This helps her clients to reinforce their own identities and the result is lasting positive feelings:
I always try and find something that each person loves/loved (usually something they were good at) and then always ask their advice on that topic. Les has tonnes, but he is an awesome navigator and we call him our personal sat nav. He was a postman so we chat about directions and roads and where they lead etc. Hilary used to bake and loves to give advice on how things used to be made and what they used to eat. We did liver and onions one day totally under her instruction. Betty is a real people person, she has a beautiful way of making the rest of the group see the positives in every day. She ran a guest house so she often uses examples of character traits from guests and relates them back to the individual in the group who may be a bit down. I say she is our in-house counsellor!
Yesterday’s post highlighted the importance of collaboration in care. The best care will be that which is based in secure relationships. Meaningful ‘care’ will always be that which is ‘done with’ not ‘done to.’ Small group care is an ideal vehicle for this because it provides a social environment where individuals reclaim a sense of their identity and feel valued.
‘We keep smiling, singing and laughing. We all help each other with our troubles. We are able to talk freely to each other, as we all have our own problems and support each other.’ Doreen.
Another example which demonstrates the themes of relationship-focused care and positive positioning is given here by another of our hosts, Caroline;
‘Phillip has brought so much to the group. Not only is he fabulous to have riding as a navigator in the car, as he gives very clear instructions as to whether it is safe to pull out or not (so much so that I feel quite lost when he is not in the car) but he is also a goldmine of ‘questions to Google’ that arise on our journeys to and fro. Recent research has included Guy Fawkes, the slave trade in Dorset, the origins of tea drinking, and the Regis of Lyme Regis. But what always surprises me is his ingenuity in coming up with solutions to any kind of problem. One day we were chatting about feeding the birds. I told the group how surprised I was that the fat balls I had put out to feed the birds in the garden were disappearing so quickly. I’d been keeping a close eye on them and was rather put-out to find that a family of magpies were descending on the bird feeders almost immediately and scoffing the lot in minutes. Philip laughed and instantly came up with a solution. ‘Well, you could suspend the bird feeder with a strong rubber band over a bucket of water then when the heavier birds alight on it they will pull it down into the water and get wet, which they won’t like. The lighter birds wouldn’t weigh enough to pull it down so they would be able to feed quite happily. Brilliant!’
*It is important that people have control over how and where they situate/position themselves in a social environment, however sometimes support from others is needed.
*Time and space are required for people to assert their favoured role or identity.
*Care is best when it is collaborative, and within the context of secure relationships.